"Keep Asking Questions Until You Get the Answers!"

This is a touching human interest story by a man diagnosed several years ago with early onset Alzheimer’s; it’s about a well known woman who’s recently disclosed she’s been diagnosed with dementia. You may remember that Justice Sandra Day O’Connor stepped down from the Supreme Court several years ago to care for her attorney husband who’d developed dementia.

Greg O'Brien is an investigative reporter now living with Alzheimer’s disease. He shares his experiences in a book called On Pluto: Inside the Mind of Alzheimer’s. Residing in the Cape Cod area, Greg writes in Psychology Today about the day as a cub reporter in Phoenix when he encountered Sandra Day O’Connor storming out of her courtroom, steamed at the ineptitude of the defense and prosecuting attorneys.

  Psychology Today

Psychology Today

To read Greg’s story and about his friendship with Justice O’Connor, click here… “Keep Asking Questions”. I hope you enjoy it.

Thanks,
Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

What His Father Taught This Doctor About Alzheimer's

“I felt all sorts of guilt and shame the day I realized Dad might have Alzheimer’s,” says Dr. Daniel C. Potts, a practicing neurologist. “The signs had been there, but I hadn’t recognized them.”  

It all came to a head in one of the “most important days in our family’s life.” Dr. Potts had welcomed his parents’ move from his small hometown of Aliceville, AL, to Tuscaloosa where he’d set up practice. His retired father, Lester Potts, took a job parking cars in a hospital garage near Dr. Potts’s medical office. “Unbeknownst to me, Dad was having trouble with losing keys, fender benders, and the like. An acquaintance working for the hospital called me and asked if I were aware of what’s going on with Dad.”

“‘I think maybe your Dad has Alzheimer’s,’ she told me.” His father lost his job that very day. “I saw this oak tree of a man cry and begin to die. After my father’s diagnosis, I found myself struggling in a dark place, and I felt myself begin to die, too.” That was 2002; his father was 74 and Dr. Potts, an only child, was 36.

  Dr. Daniel C. Potts—neurologist, caregiver, advocate

Dr. Daniel C. Potts—neurologist, caregiver, advocate

Warning signs had cropped up a few years earlier in Aliceville. Lester had worked as a saw-miller in rural Alabama among other jobs. He also was deeply involved in his civic club, in church, and in the community, even serving on the town council. His wife was the town librarian. One of the earliest warning signs occurred at their church: First United Methodist had a lovely magnolia tree cut down because it was dying. “Dad was really angry when he saw the tree gone; he didn’t understand why. So he called every church leader and blessed them out. That was so unlike him.”

  Lester Potts before his diagnosis

Lester Potts before his diagnosis

Lester was a physically strong man, and following his diagnosis his behavior became so erratic and aggressive at times that his wife couldn’t care for him. Dr. Potts and his mother finally enrolled him in the Caring Days adult center in Tuscaloosa. “It’s a wonderful place. Their staff embraced Dad and focused on discovering his ‘personhood.’”

Not long before Lester’s enrollment, Caring Days had enlisted a retired artist, George Parker, to start an art program for their clients. Lester was one of the first to participate. “Dad was very capable with his hands; he could do and fix almost anything, but he’d never painted before and shown no talent for it.”   

“Then when Dad brought home his first painting, ‘The Little Hummingbird,’ Mom and I were amazed. It was an important day for us all. In that little hummingbird, we saw Dad’s spirit soaring out of his darkness.”

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Over the course of three years, Lester painted about 100 pieces, many of which you can see on Lester’s Legacy website.

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‘The Blue Collage’ shown above is his most well known piece, says Dr. Potts. “It was painted near the end, when Dad couldn’t put a sentence together. The painting is an abstract representation of my father’s father—a high-topped shoe, a cross coming out of the shoe with a hat on it, and an upside-down crosscut saw. All images that would have defined my grandfather, who was a strong figure in Dad’s life. The colors are warm and hopeful. The painting is very spiritual to me—it says so much more than I can think or say.” 

“As Dad’s interest in art grew, he got better—his behavior was better and he was more communicative. I also think that cognitively Dad got better as well. His creativity was transformative not only for him but for all those around him. It seemed that the spirit of the very one with the disease was lifting the spirits of us all.”

  Dr. Potts, his mother Ethelda, and father Lester

Dr. Potts, his mother Ethelda, and father Lester

After seeing art’s impact on his father, Dr. Potts surprisingly started to write poetry. Surprising to both him and his wife. “I woke up in the early morning on New Year’s Day 2006 and wrote a poem. I showed it to Ellen, who said, ‘Where did that come from?’ And for the next 30 days, I did the same thing, waking up early and writing a poem. With dark circles forming under my eyes, I started to look like Jack Nicholson in ‘The Shining.’ I’d never written before.”

“Poetry lifted me out of my funk. It’s now my most important outlet, along with hiking. And this came from the heart of a man with Alzheimer’s disease.” In time, Dr. Potts published a book titled The Broken Jar, which is comprised of 30 pieces of his father’s art and 30 of his poems, one alternating after the other. His poetry can be found on his website The Wooded Path.

“Writing helped me immensely as Dad’s condition progressed, and seemed to give meaning to what was happening. In my writing, I often attempt to place myself in the shoes of the person with dementia and speak in what I perceive to be their voice. I truly feel that writing has made me a better physician; I’m a better listener, because I’ve learned to listen to the deepest parts of myself.”

Dr. Potts sums up his thoughts: “Mostly what I feel when I write is gratitude for the opportunity we were given to see Dad’s spirit soar because someone cared enough to believe that he was still present, that his soul still sang despite the disease.”

Listening to Dr. Potts share such experiences prompts several more questions…  

Me: You now travel and speak nationally as an advocate for those living with Alzheimer’s or dementia and for their family caregivers. Did you before your father’s diagnosis?
Dr. Potts:
No. 

Note: Dr. Potts’ dementia advocacy work has not gone unnoticed. The American Academy of Neurology honored him in 2008 as its Advocate of the Year for his work using the arts to improve the quality of life for those with dementia and their care partners. In 2016, he was honored by the University of Alabama Medical Alumni Association for its Martha Myers Role Model Award, honoring those who epitomize the ideal of service to their communities. “These are the two honors I’m most thankful for in my career,” he says. “They are the result of my experience with Dad.”   

CM: Are you doing anything differently with your dementia and Alzheimer’s patients from before your father’s crisis?
DP:
My approach is completely different. I like to think I always had empathy and compassion. And I’ve always tried to diagnose as early and clearly as possible. But now I also work with my patients and their families to figure out ways to help them live well with this disease. I line them up with the resources they need—reading materials, support groups, day care facilities, in-home care, and the like. I also encourage the families to look for things their loved ones can still do well.

All this came out of our experience with Dad. When he was diagnosed, I didn’t know where to turn. As strange as it may seem, caregiving skills were not taught in medical school or in residency. The thorough knowledge I received of the pathology and clinical manifestations of Alzheimer’s was not helping in the day-to-day challenges facing my mother, Dad’s primary caregiver. I didn’t know enough to help.

Since Dad’s death, my wife Ellen and I wrote A Pocket Guide for the Alzheimer’s Caregiver. (More on their book later.)

CM: Are you seeing any improvement in the training of neurologists from when you were in school—from a caregiving perspective?
DP:
No. Or very little. I attended a Dementia Action Alliance meeting. A panel of persons living with various forms of dementia was asked to raise their hands if their doctor offered helpful information and direction after telling them of their diagnosis. Not one hand went up. Some of the words used to describe their doctors were “cold,” “analytical,” “distant,” “abrupt.”

Since that meeting, I’ve started advocating for the ways we neurologists are trained. I think the tide may be changing somewhat. I hope it is.

CM: Your father died at age 78 in 2007, five to six years after his diagnosis. You were 41. How did you handle that?
DP:
After Dad died I burned out; it had been building for some time. I disintegrated into addiction, isolation, depression, and grief. It all came to a head nearly six years ago when I had to take a four-month medical leave from the practice of medicine.

A centerpiece of my recovery has been the teachings of Richard Rohr (a Franciscan priest). I first read his book Falling Upward: A Spirituality for the Two Halves of Life, and since then read many others. I also read his daily online homilies, and I’ve visited his center in New Mexico a couple of times.

(Father Richard Rohr founded the Center for Action and Contemplation (CAC) in Albuquerque in 1986. He’s an internationally recognized ecumenical teacher who’s written numerous books on spirituality, meditation, and commitment to action within the Franciscan Christian tradition.)

In addition to Rohr’s teachings, my family’s love and support—along with that of my friends, therapists, and church and support group members—did for me what I now advocate doing for those living with dementia: They helped lead me back to me.

CM: Of what value are Rohr’s teachings to your practice and involvements today?
DP:
I’m now what you might call a “mindfulness practitioner.” What I’m learning about listening at another level has found its way into my practice and into the way I interact with people. I teach on subjects using the expressive arts and storytelling to improve the quality of life in those living with Alzheimer’s and other dementias. I also teach an undergraduate course, “Bringing Art to Life”, at the University of Alabama Honors College that includes many students entering pre-med, nursing, and other health-related professions. I pour a lot or Rohr’s teachings into all these.

CM: You started a foundation in memory of your father. Tell us about that.
DP:
It’s called Cognitive Dynamics: Bringing Art to Life—Word, Drama, Art, Music. Our mission as shown on the website is “to improve the life of persons with cognitive disorders and their caregivers through education, research, and support of innovative care models which promote human dignity, especially therapies employing expressive arts and storytelling.”

Often medical research is performed for the sake of science, without a clear goal of improving the perceived quality of life. This traditional approach to research is important, but we also see a tremendous opportunity to improve the lives of those living with dementia and their families through alternative approaches to research.

(The foundation’s work is financed through grants, individual donations, and the sale of copies of Lester Potts’s paintings.)

CM: One final question, though not a simple one. What advice would you give to someone today who’s recently diagnosed with Alzheimer’s or dementia and to their family?
DP:
To the person diagnosed I would say nothing has the power to rob you of yourself. Some people have diabetes. Some have cancer or depression. You have Alzheimer's/dementia. But that does not make you "less than," or less yourself. To the extent that you are able, celebrate your life daily, and the lives of those whom you love and who love you. Do things that you enjoy doing. Just be yourself. There is nothing to be ashamed of. Laugh. Sing. Pray.

To the family: Learn as much as you can about the diagnosis, and promptly begin to make plans for the future. Do not give up on your loved one. Honor their personhood, and help them daily to express themselves. Remember the things that make them who they are, and support those. Do not hold them accountable to be what your ego needs them to be. They are who they are. Join them in their world. Celebrate the uplifts, the small gifts—a look of recognition, a shared special moment, a new talent discovered. Learn not only to give, but also to receive and draw energy from your loved one's spirit. Have no resentments, judgments, or regrets. Make a gratitude list. Sleep. Take care of your own needs without guilt. Ask for help from family and friends. Maintain your friendships and other social involvements. Pray.

From my experience with Dad I know that much of this is easier to describe than immediately to do. But working on and growing into these traits is worth the time, focus, and energy—for you and for your loved one.

CM: Thank you, Dr. Potts, for sharing your family’s story and your insights.

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On occasion, I give a book away. It seems appropriate to do so with A Pocket Guide for the Alzheimer’s Caregiver, co-authored by Dr. Potts and his wife Ellen, whose maternal grandfather and paternal grandmother lived with Alzheimer’s disease. She has over 20 years of experience in healthcare management and teaches at the University of Alabama in addition to being the executive director of Tuscaloosa’s Habitat for Humanity. 

Their book is practical and straightforward with chapters short and to the point. Here are a few of the 34 chapter titles: A Word about Caregiving; False Accusations; Inappropriate Public Behavior; Clothing; Dressing/Bathroom Issues; Eating Issues; Wandering; Walking and Balance Problems. The cover is a Lester Potts painting.  

A Pocket Guide2.jpg

If you’d like to put your name into the hat for this book’s giveaway, here’s how:

Anyone is eligible, whether you subscribe to my newsletter or not. Simply send an email to carlen@carlenmaddux.com between this Wednesday, October 24, and Friday, October 26, by 12:00 Midnight EDT. Indicate that you would like to be included in the drawing and put in the subject line: BOOK GIVEAWAY.

One person will be selected at random from those entering. I’ll send you a congratulatory email. You will have 48 hours to respond to my email. If I don’t hear back from you by then, someone else will be selected at random. For more details, click Book Giveaway.

Thanks,
Carlen Maddux
www.carlenmaddux.com
carlen@carlenmaddux.com

PS1  I share in my book our family’s 17-year experience of living with Alzheimer’s. My high-energy wife Martha was 50 when diagnosed, I was 52. Our children were in high school and college. Alzheimer’s is not the focus of our story; it’s the context. The focus is the spiritual odyssey that unfolded through this time. The book is titled A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s. It can be ordered from any bookstore or found on Amazon.

A Path Revealed.Hi-Res-9%.jpg

PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here

PS3 I’m sticking this 65-cent Alzheimer’s fundraising stamp on all my mail. It was introduced Nov. 30, 2017. More than 4.5 million stamps have been sold through its first ten months to raise $626,000 for Alzheimer’s research; the net proceeds go to the National Institutes of Health. Join me and thousands of others to Help Stamp Out Alzheimer’s.

The stamp2.jpg

How Can Forgiveness Improve a Caregiver's Life?

If you’re familiar with our family’s 17-year odyssey through Alzheimer’s, you may remember how vital it was to Martha’s well-being and mine that we let our resentments go. Not just some of them—all of them, whether recent or longstanding.

I shared a few of our issues regarding bitterness in my book A Path Revealed and in an earlier blog What Would I at 70 Tell Me at 40? The hard, underlying lesson for me is this: To stay embittered after I’ve been wronged by someone or by some situation hurts no one but me. It’s in my self interest to let that obsession go. Previously, I’d thought that forgiveness was a nice virtue I could get around to when convenient.

Our family’s experience was affirmed recently by Carol Bradley Bursack in a post that cites five examples of how forgiveness can improve a caregiver’s life. You may know that I’m a fan of Carol’s (aka #TheCandidCaregiver). I interviewed her in early 2017… It’s About Quality of Life, Not Quantity

Carol Bradley Bursack-2.jpg

Her daily blog, Minding Our Elders, is worth following. In her recent post, Carol wrote…

“Forgiveness, or the lack thereof, can loom large in the life of a caregiver. Forgiving doesn’t mean forgetting. That is rule number one for people to remember when they are working toward crafting better relationships with family members and others whom they care about. Forgiveness can have enormous benefits for the health of the person who does the forgiving. Considering that negative thinking can be disastrous to your own health, you may want to work toward the positive habit of forgiveness. Here are some people that you may need to forgive along with reasons why you should… Read the full article here about how forgiveness helps the forgiver more than the person forgiven.”  

Although Carol’s post isn’t long, it may take a while to absorb. We all know that it’s easier to say “let it go” than to do it. But to do it was vital to our family’s well-being.

Thanks,
Carlen Maddux
www.carlenmaddux.com
carlen@carlenmaddux.com

PS1  My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

A Path Revealed.Hi-Res-9%.jpg

PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here

PS3 I’m sticking this 65-cent Alzheimer’s fundraising stamp on all my mail. It was introduced Nov. 30, 2017. Through its first eight months over 4.1 million stamps have been sold to raise $579,000 for Alzheimer’s research; these net proceeds go to the National Institutes of Health. Join me and thousands of others to Help Stamp Out Alzheimer’s.

The stamp2.jpg










What This Care Partner Is Still Learning Years Later

Editor’s note: I recognize that this post cuts against the rules I’ve learned about keeping online writing short and quick, that a reader’s attention span online often is limited. But I think this post, which includes Bob Beckett’s “Notes,” is an exception to the rule IF YOU HAVE any connection, interest, or relation to the crisis of dementia and/or Alzheimer’s. I doubt these “Notes” can be absorbed in one quick reading.

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“The thing I’m stressing today to people is to develop and use all your friends, support groups, and available resources. This is a journey that would be extremely difficult if one tries to go it alone.”

 But that wasn’t always Bob Beckett’s outlook while caring for his wife over the past decade. Early on, he says, he thought he could handle any issue that arose with Kaki, who had been diagnosed in 2009 with mild cognitive impairment (MCI) at age 64. He’d noticed some symptoms a few years earlier. 

You may remember Bob and Kaki from my post 15 months ago, titled Are You Going to Love Me Forever and Ever? They live near Nashville in Brentwood, TN.

Bob-Kaki3-2018..jpg

Bob’s attitude changed during a chance meeting with a friend at, of all places, a recycling center. “You’re being selfish if you don’t let people help you,” this friend, a nurse, told him.     

“From then on I started looking for people and places for help. I finally accepted that I could not perform at the highest level all the time.” 

Bob’s early viewpoint was no different than many care partners, if not most of us. My wife Martha was diagnosed with Alzheimer’s at age 50 in 1997. Only when my back was against the wall, and after some gentle nudging from our sister-in-law, did I realize I couldn’t do it all. 

Today Bob gives himself and Kaki welcome breaks with a variety of friends, organizations, and family members. Once a month he attends a support group, which he’s done since 2009. Three days a week Kaki visits an adult care center. Two days a week a friend comes to stay at their house while Bob goes elsewhere. And their two daughters, who live in Atlanta and the Knoxville area, relieve Bob one weekend every two months.   

Yet Bob not only welcomes help now. He also shares his insights with anyone who asks and wants to talk. Even to the point of compiling a list of the many concepts and resources he’s learned over the course of their crisis.

It’s the most comprehensive list that I’ve encountered to date. I would like to have found a list like Bob’s at any point during our 17-year odyssey, but especially early on when Martha and I were floundering.

He gathers his ideas into such topics as: Now that you’ve been told you have dementia, what do I do now? Taking care of my loved one. Preparing to be a caregiver by taking care of myself. Communication suggestions. Survival tips.

Bob’s compilation is a checklist; he offers little commentary, knowing that each of us must find our own way. But it sure would be good if someone could help point me in a direction. And Bob’s checklist does just that. His instinct in compiling such a list appears to have grown out of his 30-year career in the Tennessee Army National Guard. He retired as a colonel after serving as Director of Logistics for all of Tennessee. 

His compilation is titled “Notes on Caring for My Wife with Alzheimer’s.”

Who do I think would find this helpful?

  • Anyone living with the early stages of dementia and their care partner.

  • Any care partner at any stage, as much to be a reminder as to discover new ideas. 

  • Family members of those living with Alzheimer’s or any form of dementia.

  • Friends of those living with Alzheimer’s or any dementia.  

  • Support groups.

  • Neurologists and others in the medical community dealing with dementia. If for nothing else, to share with their patients.

  • Church or other groups working with members struggling with dementia.

I’ve read through Bob’s compilation a dozen or more times, and each time I’ve encountered something I hadn’t done…but wish I had. I certainly haven’t absorbed it all in one sitting.

One caveat: Bob Beckett is not a medical professional, nor am I. His insights are derived from hard experience, conversations, and serious study, and should be considered guides or suggestions only. Please discuss with your doctor any questions specific to your issues

Don’t thank me for the following “Notes”. Thank Bob Beckett.

Carlen Maddux
www.carlenmaddux.com
carlen@carlenmaddux.com

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NOTES ON CARING FOR MY WIFE WITH ALZHEIMER’s
by Bob Beckett of Brentwood, Tennessee

(Compiled October 2017)

I have been a participant in an Alzheimer’s support group that meets monthly at Brentwood United Methodist Church, outside Nashville. The group is led by Dr. William Petrie of the Memory and Aging Clinic at Vanderbilt Medical Center’s Department of Psychiatry; it’s administered by Sue Dowling. I joined this group after my wife Kaki was diagnosed in 2009 with mild cognitive impairment (MCI). I share a brief history of our story at the end of these notes. These notes come from support group meetings and elsewhere; they are not original. I have given credit to those where I’ve documented; unfortunately I have no idea who to give credit for much of what is here, to those who have helped in my education.

There’s a lot to consider here. Don’t panic and feel guilty that you’re not doing what it’s taken me 12 years to learn. Read, think, and move at your own pace.  

If you have any thoughts, questions, or comments about what I’m sharing here, I can be reached at bob.beckett@comcast.net. Please understand that I am NOT a medical professional. Discuss with your doctor any questions specific to your issues.

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You may have heard a medical professional say, “It appears you have dementia.” After the initial shock your first question, as mine was, may be …

 WHAT DO I DO NOW?

  1. Get out of denial.

  2. Get educated about dementia – Alzheimer’s Association can be a good place to start.

  3. Find support from other caregivers.

  4. Start planning – legal, care plans, how and when you will share diagnosis with family and friends.

  5. Love one another and have fun together while you can.

  6. Spend time together experiencing the spirituality of life.

  7. Fill the house with music.

  8. Assess your living conditions for safety, and make changes as necessary.

  9. Don’t try to make this different than it is.

  10. Recognize mood is important; consider lighting candles, playing music, use fragrance etc.

  11. Develop a plan to take care of yourself physically & emotionally.

  12. Accept that letting go is not giving up.

  13. Document a list of family & friends that you can call on for help.

  14. Develop plans to involve family and friends consistently.

  15. Ask for help.

  16. Accept all help that is offered.

  17. Spread the laughter, share the cheer, be happy while we are all still here.

PREPARING to be a CAREGIVER—TAKE CARE of MYSELF

One who goes down the road of dementia, whether as a care receiver or caregiver will have to find their own twists and turns in the road. But it is not necessary to go down this road in total darkness, if you choose to take with you the light of others’ experiences. It is a marathon not a sprint, so aptly referred to as ‘The long good bye.’ We have all heard the flight attendant say, “In the unlikely event of loss of cabin pressure an oxygen mask will fall from the ceiling, grab the mask closest to you and put your own mask on first before assisting anyone else.” We understand that statement; it is especially true when caring for a loved one with dementia.

  1. As soon as practical get a thorough physical examination for yourself, make changes as your doctor recommends including your own medications.

  2. Make time for you to have some form of physical activity most days. At a minimum walk at least four days every week, initially this may be combined with your loved one.

  3. It is important to keep living while you are caregiving; find ways to be happy.

  4. Eat healthy foods in moderation.

  5. Don’t smoke.

  6. Find ways to not be on duty 24/7.

  7. Explore options such as memory day care facilities.

  8. Explore options for a care partner to come into your home.

  9. Research and interview home health care agencies that are trained in working with dementia.

  10. Find a way to be away from your loved one for personal recreation at least two nights once a quarter. One good option is to have family stay in your home with your loved one or find a respite care facility where your loved one will be safe and comfortable.

  11. Locate a good Alzheimer’s support group. They are all different, if you go to one and it doesn’t seem to be a fit for you, try another one; search until you find a place where you can share in confidence your questions, feeling, concerns and where you can contribute to others. There is added strength in knowing you are not alone.

  12. The late Thomas Merton, a Trappist monk, is quoted as saying: “He who attempts to act and do things for others, without deepening his own self-understanding, freedom, integrity, and capacity to love, will not have anything to give to others.”

  13. You should recognize the loving care you are willingly giving can slowly become overwhelming and completely wash away your identity; then there are two losses instead of one. You should find ways to keep the vigor of your own life strong and be around those people you like. Use the energy of their friendship and presence to provide the fuel to maintain your own drive, personality, and motivation.

  14. Learn to love the person as they are, not as you wish they were. That is not easy but in the end, acceptance and compassion can lead to some semblance of peace.

  15. Statistics indicate a person caring for someone with Alzheimer’s is twice as likely to have depression as someone caring for a person without dementia.

  16. Remember that no matter how good or bad a situation is, it will change.

TAKING CARE of MY LOVED ONE

  1. The best drugs you can administer may well be Acceptance & Compassion.

  2. Knowledge leads to better understanding and technique which produces excellent care.

  3. Promote independence and confidence.

  4. Do more with your loved one—not so much for your loved one.

  5. Get out of the house.

  6. Create more purpose with projects.

  7. Pay attention to your loved one. Like everyone else, they want recognition and want to be assured they are safe and loved.

  8. Verbally communicate to your loved one that you love them. This is as much for you as for them.

  9. Recognize and accept that your loved one is likely scared and lonely.

  10. Learn and remember to move at their pace, not yours.

  11. Challenging behavior is an indication of unmet need. Determine if that need is physical or emotional. Your loved one’s problems often are the result of either fear or pain.

  12. Do not be judgmental; accept they are likely doing the best they can at this point in their life.

  13. Understand the purpose of all medication; some meds are to slow the advance of Alzheimer’s; others may be calming, given to your loved one to medicate for their safety or cooperation.

  14. Medication & care are only recommendations by your doctor, not the final decisions. You and your family should make the final decisions.

  15. Only as a last resort take a person with Alzheimer’s to a hospital emergency room. If your loved one must go, stay with them at all times to explain their condition to attending staff.

  16. Today there is a plethora of training materials on the Web, DVD’s, training conferences that may be attended. These are good places to start. The local Alzheimer’s Association can recommend other resources.  

  17. My preferred online training is Teepa Snow’s ‘Positive Approach to Care’ found at www.teepasnow.com. Her videos often help me regain my perspective after particularly trying moments.

COMMUNICATION SUGGESTIONS

  1. Take three deep breaths…inhale, exhale; inhale, exhale; inhale, exhale…NOW speak to your loved one.

  2. Speak in a gentle caring manner.

  3. Look directly into your loved one’s eyes when attempting to speak with them.

  4. Don’t argue or confront.

  5. One thing at a time.

  6. Use short, simple, and direct sentences.

  7. Emphasize what your loved one can do.

  8. Don’t be critical.

  9. Don’t use such phrases as “I am trying to help you.”

  10. Respect your loved one when talking to others while he or she is present. Your loved one likely comprehends what you are saying, although they may not retain it for a long period in their memory.

  11. If/when your loved one reaches a point of not knowing who you are or your relationship, tell them “I am the person who loves you.” Don’t worry about them recalling your name.

ATTITUDE

Like everything else in life, what’s important is how we feel about something, not what it is. We don’t see things as they are. Rather we see things as we are.

As dementia progresses you and your loved one will likely be living in two different worlds. You must go into their world and recognize they can no longer come into your world.

Alzheimer’s affects the brain; it does not affect the internal love your loved one has in their heart for you.

Things don’t always work the way we want them to, but they usually work the way we expect.

SPIRITUAL THOUGHTS and PRAYERS

The Prayer of St. Francis… “Lord, make me an instrument of your peace. Where there is hatred, let me sow love; where there is injury, pardon; where there is doubt, faith; where there is despair, hope; where there is darkness, light; and where there is sadness, joy. O Divine Master, grant that I may not so much seek to be consoled as to console; to be understood as to understand; to be loved as to love. For it is in giving that we receive; it is in pardoning that we are pardoned; it is in dying that we are born again to eternal life.”

Memory may be gone from your loved one, but the Holy Spirit does not leave your loved one.  The Spirit of God is present in every person created by God.

People are like stained glass windows. They sparkle and shine when the sun is out. But when darkness sets in, their true beauty is revealed only if there is a light from within.

Most Holy Spirit, guide me on my journey as a caregiver. Each step of the way I need you. I don’t know how long this trip will last. Please give me comfort and rest when I’m done. Amen.

Father, you gave us a mind so we can think, plan, understand, and remember. Help me to see into the mind of my loved one. Where there may be some loss, please fill that space with your peace. Amen.

God, help me step back and get a clear look at what’s happening with my loved one. Please give me the skills to be a good observer who is aware of what a mind, body, and spirit need. Amen.

Dear God, I’m sorry for the times I’m angry. I seem to run out of patience before my work is done. Give me that gift so that I will be able to always give compassionate care. Amen.

May your joys be as deep as the oceans and your troubles as light as its foam. And may you find sweet peace of mind wherever you may roam.

SURVIVAL TIPS 
from Arkansas Coach Frank Broyles’ book,
“Playbook for Alzheimer’s Caregivers”

  1. Put staying healthy at the top of your list.

  2. Have a backup plan in case something unexpected happens to you.

  3. Take one day at a time.

  4. Keep your sense of humor.

  5. Pat yourself on the back for the good job you are doing.

  6. Get enough rest and eat right.

  7. Make time for the things you like to do.

  8. Talk about how you feel with others.

  9. Listen to your friends.

  10. Make a list of all the things your loved one can still do.

HOW LONG DO WE HAVE?

After thinking about this question I have decided it is a question I do not need to think about any more until we involve Hospice. Rather, I now choose to focus on what we can do today, this week, this month, this year, for both of us to enjoy life as much as we can while we are still healthy and living well.

PREVENTION
How do I protect myself from dementia?

Reduce the risk factors associated with Alzheimer’s. We are taught now that the following may have more to do with Alzheimer’s than does genetics: Sedentary life style; obesity; smoking; high cholesterol; high blood pressure; hypertension; consistent exposure to chemicals; chemicals injected in animals and vegetables that are consumed by humans; lack of sufficient, restful sleep.

The following disciplines are important for a healthy brain: Fitness and physical activity—walk; good aerobic exercise; restful sleep; mental stimulation; spirituality; Mediterranean diet; socializing; stress management; control of hypertension.

 **********************

>>APPENDIX<<

WHAT I HAVE LEARNED ABOUT DEMENTIA

  1. Dementia equals degenerative brain failure.

  2. Dementia is an umbrella term that covers multiple issues of brain failure; the most widely known form of dementia is Alzheimer’s which some estimate to be almost 70% of those affected. Other well recognized forms of dementia are: Vascular dementia; MCI or mild cognitive impairment, which may develop into Alzheimer’s over a period of time; Parkinson’s, which affects the motor skills; Lewy Body type often experiences hallucinations; Frontotemporal Lobe (FTL), which appears to initially affect behavior and emotion; CTE is associated with athletes who experience multiple head injuries. The list goes on & on.

  3. Dementia is a progressive memory decline that affects: a) language; a loss of language skill is referred to as aphasia; b) motor skills; c) ability to think or reason.

  4. The brain is less than .02% of body mass but requires 20% of body energy. Recognize every brain is different so every individual who exhibits signs of dementia will have a different experience. There are many common items but also different personal reactions.

  5. The medical community recognizes at least three stages of dementia: a) loss of memory b) confusion c) neurological issues. They usually occur in that order but not always. In estimating time sequences these stages occur in approximately three-year periods, but not always: early stage, middle stage, and late stage. Several health organizations break these stages into 6 or 7 phases for determining and understanding how to provide the best care.

  6. At this point there is no known cure for Alzheimer’s, so for the long term there is no hope—that is one of the most difficult parts of confronting this disease. Unlike cancer or heart disease we cannot point to cures and survivors.

  7. Understand dementia is not just a medical issue. It is also embedded with emotional, psychological, and spiritual issues that must be realized and resolved if we want healing.  Dementia will affect all phases of your life, the lives of those you love and who love you.  Consider and address the effect on the physical, emotional, psychological, financial, and spiritual aspects of your life. From the book “A Path Revealed” by Carlen Maddux.

  8. Alzheimer’s causes your loved one to lose their biography so they no longer know “who I am.”

WHAT CAUSES DEMENTIA?

  1. Probably the most correct answer is we don’t know. There are several well researched hypotheses, many of which probably have some validity. 

  2. The following previously mentioned risk factors appear to have more to do with Alzheimer’s than does genetics: Sedentary life style, obesity, smoking, high cholesterol, high blood pressure, hypertension, consistent exposure to chemicals, especially chemicals that are digested by animals and then consumed by humans.

  3. Lack of good sleep; this is an interesting hypothesis and worth exploring.

  4. It is estimated that less than .02% of those affected with Alzheimer’s are the results of genetics, often referred to as hereditary. APOE-4 is a specific gene that may be passed. Almost always in those cases when Alzheimer’s is hereditary it is obvious as early onset or recognizable before age 60. 

  5. Much is written about amyloid, tau, tangles and their effect on the brain. There are many pharmaceutical reports that are available for your review on these subjects.

  6. Inflammation increases the production of amyloid, killing healthy neurons.

  7. Anesthesia should be avoided or at least minimized for individuals who have indicated Alzheimer’s symptoms

HOW IS ALZHEIMER’s DIAGNOSED?

  1. To properly diagnose Alzheimer’s requires a competent medical professional. It is encouraged that either a medical doctor with a specialty in psychiatry or a neurologist who has experience in this field be the doctor who administers and evaluates the tests and determines the diagnosis.

  2. There are multiple tests for an evaluation, including a complete assessment of medical history, physical exam, neurological exam, brain imaging. Also including memory evaluation; simple problem solving; remembering a short list of words, and then recalling those words after several minutes into the conversation; answering questions like: What is the day, date, month? Who is president?

  3. Two simple tests that are often used are MMSE—Mini Mental State Exam, which asks a person a range of 30 simple questions; the number right identifies severity of disease at time of exam. The second test is known as Mini-Cog: The person is asked to remember names of three common objects several minutes into conversation. The second task is to draw the face of a clock, showing all 12 numbers in correct position & indicating the time as specified by examiner.

  4. It is estimated by Mental Health of America that as many as 15% of the individuals tested are misdiagnosed. For example, an individual with severe depression may be wrongly diagnosed with Alzheimer’s. So it’s vital to be working with a competent physician trained in the field.

WHAT ARE the MOST COMMON MEDICATIONS
PRESCRIBED for ALZHEIMER’s?

It is important to remember that the medications currently being prescribed do not stop or reverse the buildup of amyloids; they only slow the inevitable reduction of brain functions. Each of the following have proven to slow the speed by which Alzheimer’s reduces the abilities of some patients. Do not expect any to be a cure. These medications may slow deterioration of the brain for three to five years. Deterioration will continue just at a slower pace. This medication list is from the WebMD website: a) Aricept, or Donepezil; b) Namenda; c) Exelon patch.

RESOURCES for MORE IN-DEPTH KNOWLEDGE

The fortunate experience we have today is the amount of information available for those who take the time to search and study. I truly believe the more we educate ourselves about dementia the more fulfilling our life and the life of our loved one can become. (Please note: Some of these are specific to my locale; discover similar services in your community.)

  • The Alzheimer’s Association has a very good website worth visiting and reading for introductory information: www.alz.org. The basic information written here is expanded on their website; they also provide a monthly newsletter and electronic notes. Recognize that the Alzheimer’s Association is a non-profit that is tasked to raise funds for research and their ongoing expenses. Several other non-profits also are worth exploring.

  • As mentioned previously my preferred training is Positive Approach to Care (PAC), presented by Teepa Snow at www.teepasnow.com. (PAC training in the Nashville area with Debbie Miller is excellent; Senior Helpers of Franklin, TN; 615.696.4842.)

  • The WebMD site is very informative and worth an initial visit.

  • The Middle Tennessee Council of Aging produces a “Directory of Services” that is a free, impartial guide for seniors & caregivers. 615.353.4235.

  • An excellent beginning guide with practical tips is “Coach Broyles’ Playbook for Alzheimer’s Caregivers”; www.alzheimersplaybook.com; or order print copy from via 479.435.0410.

  • National Institute on Aging booklet (Pub#17-AG6173): “Caring for a Person with Alzheimer’s Disease.”

  • Books & movies: Lisa Genova’s “Still Alice,” “The Notebook,” “Love & Other Drugs” are fiction but interesting and informative.

  • “Where the Light Gets In: Losing My Mother Only to Find Her Again” by Kimberly Williams-Paisley.

  • Maria Shriver’s “What’s Happening to Grandpa?” for talking to grandchildren about dementia.

  • Nashville National Public TV has a 10 part series “Aging Matters”; their DVD on dementia is well done.

  • “Minding our Elders” (www.mindingourelders.com) is a daily blog from Carol Bradley Bursack.

  • Dr. Landy Anderton, clinical psychologist, says Carlen Maddux’s book ‘A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s’ “belongs on the nightstand of every family coping with a crisis.”

**********************

OUR STORY

Kaki and I had our first date in October 1960; at that time we were both students at Tennessee Tech in Cookeville, TN. After graduating, we married in May 1964. Our two daughters Andi and Susi were born in 1968 and 1972, respectively. Kaki retired after 20 years teaching middle school in May 2001. During her last 10 years she was the technology coordinator in a Nashville area parochial school. At age 60 she was ready to spend more of her time being GranKaki, doing volunteer work as a tutor for less fortunate children, traveling, reading, quilting, and enjoying life outdoors.

  (l to r) Daughter Susi, Kaki, daughter Andi, granddaughter Helen, Kaki’s sister Marilyn. (December 2013)

(l to r) Daughter Susi, Kaki, daughter Andi, granddaughter Helen, Kaki’s sister Marilyn. (December 2013)

In 2006 on a cruise, I recognized Kaki was finding it difficult to orient herself to the ship. This was strange because Kaki always had an excellent sense of direction. During the months that followed I recognized Kaki demonstrating symptoms that perhaps indicated memory issues. In early 2009, after a family discussion with our daughters, Kaki agreed to an evaluation session with Dr. William Petrie. After initial testing by his staff, we met with Dr. Petrie who told us Kaki could be diagnosed with Mild Cognitive Impairment (MCI), which is a form of dementia that often may lead to Alzheimer’s.

Dr. Petrie’s counsel was straight forward: 1) Begin a consistent walking program; 2) Learn something new to challenge your brain; Kaki chose to relearn playing the piano; 3) Develop a bucket list and start working on it while you can still appreciate and enjoy life.

The diagnosis was not easy to accept. Like many who confront this disease we decided not to share with anyone outside our immediate family. Kaki had the misguided belief that an Alzheimer’s diagnosis is like having a big red “A” stamped on your forehead. Not the way either of us wanted to be identified. My choice was to focus our lives more on activities with purpose and to educate myself about dementia. It was not long before friends began to question some of Kaki’s actions; soon, we reluctantly opened our lives to their love, prayers, and support.

At the writing of these notes, Kaki still enjoys relatively good physical health, for which we are thankful. For about four years her medication to slow the spread of Alzheimer’s was the patch from Exelon. She no longer takes any medication to slow the disease. She has been a part of an excellent memory day care program a couple of days each week for over four years. She has virtually no verbal communication skills; what she says is gibberish. Yet we know she still has some abilities to understand what is said. It is easy for her to become confused, disoriented, and scared. Her short term memory is limited at best. She does not understand our relationship as husband and wife but I believe she does know I am a person who loves her. One great blessing—she still knows how to laugh.

Leaving the work force was something I never expected to face. I always intended to work, being productive, earning an income, so long as I was living. Consequently, the decision to leave my work, as an independent sales consultant, was difficult. In 2012 I became a full time caregiver for my wife. I recognize that I am still working, but there’s just no financial compensation for my services.

I recognize the quality of health care available is largely dependent on our financial well-being. Many of us who face long term dementia issues are concerned with costs associated with full time memory and medical care. This is an area where I offer no suggestions or comments.

the end

Her Prayer for All Who Live with Dementia Worldwide

Rev. Dr. Cynthia Huling Hummel was asked by a mutual friend to write a prayer commemorating World Alzheimer’s Month this September. That doesn’t sound so unusual for someone with her background and credentials except for the fact that at age 57 she was diagnosed in 2011 with mild cognitive impairment (MCI) before slipping into early-stage Alzheimer’s two years ago. 

 Pastor, advocate, author, country singer, mom, and kayaker

Pastor, advocate, author, country singer, mom, and kayaker

World Alzheimer’s Month is the annual global campaign to raise awareness and to challenge the stigma that engulfs so many who live with dementia. (It certainly engulfed Martha and me early on.) The statistics are grim and staggering. It’s estimated that every 3 seconds someone in the world is diagnosed with some form of dementia (every 65 seconds in the U.S.). An estimated 50 million people worldwide have some form of dementia, a figure expected to triple in the next 30 years unless there’s an effective intervention.

It’s against this backdrop that Dr. Huling Hummel penned this humbling, hopeful prayer, lifting it up for each of these 50 million persons and their families; for herself and her family; and for the rest of us, no matter what crisis we may be struggling with, or not.  

(You may want to slow down and read this prayer aloud.)

Dear Lord,

Bless those of us who are living with a diagnosis of Alzheimer’s or a related dementia. When days are difficult, wrap us in a blanket of your love and comfort us with your presence and your peace. When nights are dark, give us a star to follow—a nightlight in the heavens to remind us that you are there—guarding and guiding us and lighting our paths. When we are discouraged, give us hope. When we are hopeless, give us faith.  When we are weary, carry us close to your heart. When we feel depressed or angry, soothe us. 

Wipe away our tears and our fears and help us to move from “Why Me?” to “What Next?” 

We thank you for our care partners, for our family and friends who are walking with us on this strange and difficult journey. Give us all strength and courage and a sense of purpose as we join our hands and hearts to help others we meet along the way.

Help us all to cultivate an attitude of gratitude each and every day. Remind us to look for blessings in every day, and for holy moments walking in the rain, singing a familiar song, reminiscing over old photos.    

Lord, we pray for the doctors and nurses and all who care about us and for us. We pray for the researchers who are searching for treatments, therapies and cures. 

Most of all, Lord, we pray for a world without Alzheimer’s. 

Thank you! Amen.

Dr. Huling Hummel is active in the ClergyAgainstAlzheimer’s network. She shared her story in a January 2017 issue of Woman’s Day magazine. Our mutual friend, Lynda Everman who helped make the Alzheimer’s stamp a reality, made the stole Dr. Huling Hummel is wearing above.

Thank you, our newfound friend, for opening your heart to us all.

Carlen Maddux
carlen@carlenmaddux.com
www.carlenmaddux.com/book/

P.S. Feel free to forward this to any who might find it meaningful. Copy/paste/send this link... www.carlenmaddux.com/blog/her-prayer-for-all-who-live-with-dementia-worldwide

 

The Stigma of Dementia: Is the Fog Finally Lifting?

If you haven’t seen this recent article from Kiplinger’s Retirement Report titled “Finding a New Path with Dementia,” it’s well worth the read, especially if you or someone in your family is grappling with dementia in one of its many forms and stages.

For decades, a painful social stigma has been associated with dementia and its most extensive form, Alzheimer’s. For that matter, virtually every mental disability suffers from such a stigma.

   &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; www.metoffice.gov.uk

                                                     www.metoffice.gov.uk

You may remember that when my wife Martha was diagnosed with Alzheimer’s in 1997 she had just turned 50 and the first thing she told me after a long hard cry was this: “I do NOT want to tell anyone. Not our children. Not my parents or my brothers. And certainly not any of our friends.”

That was a difficult request to honor. Within a few weeks Martha did agree to tell our three kids who still were in high school and college. And while word eventually did get out, Martha and I continued to pretend that no one knew but us.

This Kiplinger story is an excellent representation of the growing movement to support and embrace those living with dementia and their care partners. By comparison, the era when Martha was diagnosed not that long ago feels like the dark ages. There’s still a lot of work to do, however. Too many people still feel isolated, alone, and burned out.

I’ll be surprised if you don’t agree with my reaction to this article.

Carlen Maddux
www.carlenmaddux.com
carlen@carlenmaddux.com

PS1  My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

A Path Revealed.Hi-Res-9%.jpg

PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

PS3 I’m sticking this 65-cent Alzheimer’s fundraising stamp on all my mail. It was introduced Nov. 30, 2017. Through its first six months, 3-million stamps have been sold to raise $404,000 for Alzheimer’s research; these net proceeds go to the National Institutes of Health. Using these stamps one-by-one can add up: the cancer fundraising stamp, which has been out for several years, has to date sold 1.037-billion stamps and raised $87-million for research. Join me and thousands of others to Help Stamp Out Alzheimer’s; our goal is to raise $1-million by the end of 2018.

The stamp2.jpg

 

 

The Joy of Martha's Art

You may have seen some of my wife’s watercolor paintings on my website. But I thought you might like to see this short video (2:30) on her art by Paraclete Press, my publisher, as they acknowledge June being Alzheimer’s and Brain Awareness Month. This was the first time Martha showed any interest in art in our 25 years of marriage, about 18 months after she was diagnosed with Alzheimer’s at the young age of fifty.

CLICK HERE IF YOU'D LIKE TO SEE THE VIDEO

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A Conversation with My Wife's Neurologist

While Alzheimer’s seems to be growing in epidemic proportions, my gut tells me that the fear of this disease is exploding even faster. So I decided to share this concern and others with the one medical expert I personally know, Dr. Steven Cohen. He was my wife Martha’s neurologist for 17 years. It seems only appropriate to have this in-depth conversation now, since June has been designated Alzheimer’s and Brain Awareness Month and June 21st as The Longest Day.

“Worry is a common problem in our culture,” Dr. Cohen says. “Not just about Alzheimer’s, but worry, worry, worry in general. I tell those worrying about Alzheimer’s that no one can predict the future; all any of us has is the present moment in which we should make the most of.”

A practicing Jew who until 15 years ago was an atheist, Dr. Cohen shares this story:

One evening an old Rabbi told his grandson about a battle that goes on inside people. He said, “My son, the battle is between two 'Souls' inside us all.

“One is The Nefesh Habahamis (or animal soul): It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.

“The other is The Nefesh Hoelokis (or G-dly Soul)It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith."

The grandson thought about it for a minute and then asked his grandfather, "Which soul wins?"

The old Rabbi simply replied, "The one you feed."

“This story and many other ideas have taught me a great deal about human nature,” Dr. Cohen says. “I’ve told my patients that something may actually be worse than Alzheimer’s, and that is worrying about it. They could spend the next 30 years worrying about getting this disease and then be hit by a bus at age 100, and as a result of all their worry they will have experienced a much less enjoyable life.”

Cohen Hedshot3.jpg

That advice seems much easier to say than follow, I told Dr. Cohen. “Martha and I did find that meditation helped diminish our anxiety. What suggestions do you have for how not to worry?”

“For those who tend to worry,” he says, “I would avoid watching the news or reading the newspaper, or at least limit it. I know some people who have the TV on all the time at home. The media is geared to bad news and has the potential of getting us into the habit of worrying. Some can handle it, others can’t. Remember…which soul do you want to feed?

“But sources of worry can be more complex than that. How I discussed this with my patients depended a lot on their knowledge and sophistication with regard to psychological issues. Typically, though, I would explain the relationship of emotions to their sources—that is, to their thoughts and experiences—and teach them how to be ‘mindful’ of these. This is a mental process by which you attempt to be aware of what is occurring in your mind, consciously and subconsciously. It can be difficult to implement but with practice it’s become almost automatic for me. This process can help you uncover the underlying issues.

“Sometimes, though, these underlying issues can be subtle and deep-seated, triggering subconscious and conscious thought from one’s past experiences. The best example here is a post traumatic stress disorder (PTSD) for someone who’s been in combat.

“I have a dear friend who was in Vietnam and who is a physician in St. Petersburg. The first time he went to Bayfront Medical Center, the trauma helicopter was landing on the hospital roof. He immediately threw himself to the ground and started to look for his rifle. In Vietnam he and his mission team were getting into their helicopter when they were ambushed by the North Vietnamese. Their team leader was shot in the chest and died in my friend’s arms. Fortunately with his training, my friend understood exactly why Bayfront’s helicopter triggered this alarming reaction and he was fine after that.

“Here’s another example, a personal one.  When we moved here, I was 40 years old and my girls were four and five. One of them had a homework assignment that involved using white paste in a jar with a brush in the lid. When she opened the jar of paste, I got a whiff of the smell and immediately became nauseous and vomited. Fortunately, I was in touch with my subconscious thoughts and realized that an experience from my first grade had been triggered—I had been physically and psychologically abused by my first grade teacher. Realizing the cause of my nausea, the odor of that white paste didn’t bother me again.

“I understand all this can get complicated. My final advice would be that if worry, fear, anxiety, or depression is impairing your behavior and relationships, a professional counselor could be of real help.”

Dr. Cohen, 71, is rather unique among neurologists. He spent the first nine years of his career in neurological research at Johns Hopkins and then decided to go to medical school there. He subsequently opened his practice in St. Petersburg, where he retired last fall after 31 years. His residency was in both pediatric and adult neurology, but his practice was mostly adults.      

As a caregiver too often frustrated over the course of 17 years, I’ve seen little or no advance in reversing the course of Alzheimer’s. (Martha had just turned 50 when diagnosed in 1997; our three children were still in high school and college.)

Dr. Cohen disagrees with me. There’s a better understanding today, he says, of what he calls the “mechanics” of the disease. After many failed clinical trials, “we understand much better the bio-chemistry genetics, the patho-physiology, and the neuro-pathology. This knowledge will eventually lead to effective treatment and prevention.”

Don’t ask me to interpret what he just said. I’ll take Dr. Cohen’s word for it and be glad that someone in the know sees progress being made, however slow and hidden to this layman’s eye.

June AZ2.png

I have more questions for Dr. Cohen…

Me: I saw a headline not long ago: “Burnout among caregivers is rampant.” Are you seeing any advances by the medical community in addressing not only the needs of those disabled by Alzheimer’s but also their caregivers?
Dr. Cohen: This is gradually changing in a positive way. When I contrast my daughter’s medical education to the one I received there is much more emphasis today on the psycho-social aspects and psychological needs of patients and caregivers. However, I think medicine still has a long way to go.

It’s highly dependent on the particular medical personnel involved in the care. Many physicians are attuned to these needs of patients and families and help as much as possible. Unfortunately, some physicians are highly educated ‘technicians’ who pay little attention to the psychological, emotional, and spiritual needs of patients and families.

A major obstacle is the pressure that physicians are under to see more patients in less time. Medicine has become an industry, and more and more doctors work for hospitals and corporations where the bottom line is too important.

Me: How critical is a correct diagnosis? If someone is losing their memory and thought processes, what difference does it make what you call it?
Dr. Cohen:  It’s extremely important because there are other entities that can mimic Alzheimer's disease, which often are treatable. A thorough history and physical examination, along with a neuro-psychological evaluation, can be useful in coming to a correct diagnosis. It’s important to see a neurologist or psychiatrist who’s experienced in making the diagnosis.

I once saw a healthy man in his 70s who was told he had Alzheimer's disease. His wife already had started looking for a nursing home. When he came to me and I went through his complete medical history and medications, I discovered that he was over-medicated with one of his prescriptions. That was causing his confusion. When this medication was stopped he quickly returned to normal. Sometimes sleep apnea, which is very easy to fix, can cause significant memory problems, and so a sleep history needs to be taken.

Me: What do you suggest for those in their 30s, 40s, 50s, and 60s as to things they could do now to possibly ward off dementia, or at least improve the odds?
Dr. Cohen:  No one knows for sure. However, my bias is that one should have a basically healthy and enjoyable life as much as possible. I doubt that any specific dietary or lifestyle changes will make a difference. Regular medical care is important because other things can contribute to Alzheimer's disease and make it worse.

It’s also important to “not worry about it," as I’ve told many patients who one day couldn't find their keys or purse and start to think, ‘Oh my, this may be the beginning of dementia.’ Or every time there is a slight memory lapse, such as a word or a name, they become quite anxious.

Me: I’ve seen the distressing statistics regarding Alzheimer’s in the U.S. Such as 22-million people directly affected today, including those with the disease and their family caregivers, according to the latest figures from the Alzheimer’s Association. 28-million are anticipated by 2025 if there’s no intervention. To what do you attribute this epidemic growth?
Dr. Cohen: I take all statistics with a grain of salt. You know the old saw: “There are lies, damned lies, and statistics.” It’s impossible to control all the variables with human conditions. Such increases cited are related to several factors. First, the medical community is much more aware of the diagnosis. Secondly, we have a population that is getting older and this is an illness that largely affects older individuals. Also, while the prevalence of the disease is probably increasing, we have no way of knowing the effect of future discoveries, which could certainly decrease or eliminate this terrible illness.

Me: You may remember when Martha was diagnosed in 1997 that aluminum was the buzz as a possible cause of Alzheimer’s. I threw out all our aluminum pots and pans and searched high and low before finding a deodorant not containing aluminum. But within a year or so that was debunked.
Dr. Cohen: Exactly. I know a lot of people who did what you did. It was a flawed study. 

Me: Why do you think two out of three Alzheimer’s victims are women?
Dr. Cohen: I have no idea.

Me: When Martha moved into a nursing home, she was unable to talk and take care of herself, and soon was unable to walk. Do you think someone still retains their “personhood” when reaching such a stage?
Dr. Cohen: Just because someone can no longer interact and function in ways that we consider “normal” doesn’t mean that they have lost their humanity. We have no way of knowing how much these individuals understand and this makes it even more important to approach them with kindness and compassion.

For example, I saw a video of a man who was lethargic and incapable of communicating and caring for himself. The staff discovered the music that he liked and started playing it for him. His response is remarkable. (You can see that video clip by clicking this link.) 

Me: Much of my life I thought illnesses and diseases were physical issues that needed to be addressed as such. I suspect I’m not alone in what I thought. But our experience with Alzheimer’s showed me that emotional, psychological, and spiritual issues also were embedded, not only within Martha but also within our children and me. Things like bitterness, depression, impatience, alienation, stress, anxiety. What impact do you think these kinds of issues—whether positive or negative—can have on the brain and nervous system as well as on the body?
Dr. Cohen: They can have a marked effect. The stresses of modern life, for example, can make the symptoms of dementia worse because of anxiety and/or depression. Many excellent books are written on this. A couple of layman-friendly ones are The Stress of Life by Dr. Hans Selye and The Divided Mind: The Epidemic of Mindbody Disorders by Dr. John E. Sarno.  

Me: To be told, “You appear to have Alzheimer’s disease,” can be a shock not only to the person receiving the diagnosis but also to their loved ones. It certainly was for Martha and me. What are the initial comments you might say to the patient and their prospective caregiver?
Dr. Cohen: I tried to sense what the patient and family needs to hear. Some need to go into a place of denial for a while, and for others knowledge is helpful. I tried to let the patient and family lead the discussion, and I did my best to reassure them that this diagnosis doesn’t mean their life has ended.

(Note: If you’ve read my book, you may remember that when Martha and I were told she has Alzheimer’s, I described the doctor as being stiff, formal, cerebral, and cold. Dr. Cohen was Martha’s doctor and had tested her, but on the day we were scheduled to get the test results, he’d been called out on an emergency. Another doctor handed us the results.)

Me: You grew up in Chicago in a non-practicing Jewish home. You considered yourself an atheist until you encountered an approach within the Jewish tradition that struck you by how closely it echoed the basic principles of psychiatry. Apparently that caused you to reevaluate your faith in a deep, continuing way. Did this have any impact on the way you approached a patient and their caregiver? Not the medical evaluation so much as, say, your “bedside manner”?
Dr. Cohen: Absolutely yes. I always considered myself compassionate. However, through studying Judaism I was presented with excellent role models and ideas as to why compassion is so important. I also was able to see medical care in a much broader human perspective.

Thank you, Dr. Cohen, for making time to share your insights. I suspect many readers will find these informative and helpful.

~~~~~~~~~~~~~~~~~~~~~~ 

I had an enjoyable conversation recently with two journalists on New York City’s Catholic TV network. I was able to share highlights of our family’s 17-year odyssey through Alzheimer’s. If interested, you can watch it on this program called ‘In the Arena.’

Thanks for tuning in,
Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

PS1  My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

A Path Revealed.Hi-Res-9%.jpg

PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

PS3 I’m sticking this 65-cent Alzheimer’s fundraising stamp on all my mail. It was introduced Nov. 30, 2017. Through its first four months 2,196,087 stamps have been sold to raise $280,486.21 for Alzheimer’s research; these net proceeds go to the National Institutes of Health. Using these stamps one-by-one can add up: the cancer fundraising stamp to date has raised almost $90-million for research. Join me and thousands of others and Help Stamp Out Alzheimer’s.

The stamp2.jpg

 

 

 

What More Is This Doctor Doing About His Early Dementia?

“I’m a whole lot better than I was two years ago. I haven’t felt lost this year. In fact, I feel like the old me.” This is Dr. David Compton in our most recent conversation.  

“When I was diagnosed, I was thinking, ‘I’m going to get worse’. I thought I was doomed. Well…screw that.”

Two years ago, David said he’d been diagnosed with an early form of Alzheimer’s disease, but now he says more specifically it is a condition called MCI, or mild cognitive impairment, which can put one at an increased risk for Alzheimer’s or other dementia.  (For those unfamiliar with MCI, the term “mild” can be misleading.) If you’ve been reading my blog you may remember David’s two previous conversations, one a year ago and the other two years ago in the spring of 2016, not long after he was forced to step aside from his 30-year practice in family medicine.

This most recent conversation is refreshing. David’s energy, focus, and coherence surprised me. “My words and thoughts no longer are a scramble,” he says. “Most times they are clear and make sense to me.”

  Dr. David Compton (center) with two friends at Knoxville’s Women’s March

Dr. David Compton (center) with two friends at Knoxville’s Women’s March

I won’t repeat our two previous conversations, but to draw a quick connection: David and I grew up in the same small Tennessee town, Cookeville. We knew each other but weren’t “buddies”—he’s nine years younger than me. His older sister Susan and my younger sister Alice were good friends. David, 63, now lives outside Knoxville; his family practice was in Oak Ridge.

David points to a couple of catalysts for his change in outlook. First, his geriatric medical specialist last August prescribed Aricept, which can help delay the onset of dementia symptoms in some people. (This is the only med he’s taking.)

The other was the “pointing-the-bone story your friend in Australia tells.” I’d sent David a set of tapes in which the Anglican Canon Jim Glennon shares his experiences from decades in the healing ministry. I also describe this story in my book A Path Revealed (p. 83) and in an earlier blog post. In this story, Canon Glennon described a longstanding practice among Australia’s Aboriginal tribes. If a man broke a taboo, the tribal doctor came to him, pulled the leg bone of a bird from a bag, and pointed it at the man. Thus, ‘pointing the bone.’ And that means, Canon Glennon said, “that because the man has broken a tribal taboo, he is going to die. There are documented cases of him falling down dead at once. He will almost certainly die within a few days because he believes he’s going to die.” 

And the point of this story? “We all have faith,” Canon Glennon continued. “And if you believe that you’ve got a disease that’s fatal, that’s your faith. You believe you’re going to die.” 

  &nbsp;The ‘Love Kitchen’ where David volunteers on &nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Tuesdays

 The ‘Love Kitchen’ where David volunteers on       Tuesdays

Many diagnosed with MCI eventually slip into Alzheimer’s or another dementia, but not all do. “That’s me,” David says. “I believe I’m going to get better, or at least not worse.” 

Belief, positive or negative, can be a powerful cognitive exercise, he says. “Believing that you’re going to get better can lay down positive neural pathways in your brain. But you’ve got to believe it; you’ve got to be intentional.” It’s important, he adds, to understand how these pathways are developed.

Since his diagnosis in 2015, David has scoured the medical journals regarding MCI, Alzheimer’s, and other dementia. “There’s still a lot we don’t know.” He’s also studied cognitive development and the practice of “laying down neural pathways” through cognitive exercises.

For example, he says, “Activism helps me cognitively. My soul is activism; it always has been.”

He ticks off a few activities he’s involved in: volunteering weekly in an urban kitchen; meeting new friends at environmental and political rallies; going to lectures; supporting others in his support group.

“A commitment to something greater than yourself is energizing. “This is a major reason why I got into family practice—I wanted to help.”

“I’ve been reading a lot of American history lately, and I believe we are at a dramatically critical point in our history,” says this family doctor-turned-activist, who in junior high became intrigued with Henry David Thoreau and his writings on civil disobedience.

  &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Three of David’s many photos from his hikes

           Three of David’s many photos from his hikes

Now you, dear reader, may not be ready to step into marches and civil disobedience as David says he is, but the point he’s making is this: It’s vital to discover what energizes you and do it, if at all possible. Find your passion and jump in. It can be a powerful cognitive exercise.

Nonetheless, David says he’s always looking to keep himself in check, to not pump stress into his life through over-committing or obsessive behavior. “I still get upset real easy over little things and have to reel myself back in. I still have my bad days and have to work out of them.”    

“Every little thing I do each day is a cognitive exercise. While trying to go to war with this situation or illness, I’m aware that I’ll have off days. But with that in mind, I must stay true to the course.” 

He ticks off some of his own positive cognitive exercises: regular physical exercise, such as walking; attending lectures; reading essays and journals; meeting new friends at rallies; regular conferences with his cognitive therapist and geriatric specialist; working weekly in an urban kitchen; photography; planning and cooking family meals.  

Two years ago he was walking five miles a day, but arthritis has forced him to cut back. Nonetheless, “I still get 30-40,000 steps in a week.”

“I’m convinced that if you don’t put in the work, you’re not going to get better.”

“Stress damages,” he says. “Wrong diet damages; accepting your fate damages; sitting at home watching TV damages; feeling sorry for yourself damages.”

  David at an Alzheimer’s Tennessee fundraiser walk with a new friend, former UT football coach Phil Fulmer

David at an Alzheimer’s Tennessee fundraiser walk with a new friend, former UT football coach Phil Fulmer

David lists other Do’s and Don’ts drawn from his years of experience as a doctor and from working with his cognitive therapist and geriatric specialist. These may be of value in your own efforts, either as one diagnosed with a dementia or as a care partner...

  • Stay on a routine without obsessing over it. “Getting off my routine confuses me, which makes me depressed. So BALANCE is important.”
  • If someone with MCI or early onset Alzheimer's can find a support group of like- minded (pun intended, he says) people, get in that group and stay with them. Support each other!!
  • Control health issues like blood pressure, blood sugar, sleep apnea, anxiety, and depression. All are related to early cognitive decline if not controlled. 
  • Commit but don’t over-commit. Don’t obsess.
  • Work regularly with a counselor or cognitive therapist as much as you’re financially able; set up a program together and then do it.
  • Change your inner dialogue: “I’m going to get better, not worse.”
  • Immerse yourself into a fun, stress-free hobby, such as photography, art, woodcarving, writing, or music.
  • Don’t isolate yourself; get involved with your family and friends. Make new friends.
  • Realize everything you do is a cognitive exercise. Lay down positive neural pathways; avoid the negatives. 
  • Avoid stressful situations.
  • Be courageous as a community of caregivers and patients.
  • It’s a marathon, not a sprint. “There will be failures but I must keep trying to find the things I can do and do them.”

David emphasizes that his protocol is not anyone else’s. His ideas may be helpful to others, he says, but it’s imperative for others to work out their own programs with their neurologist/gerontologist and therapist/counselor. He says he likes to share his thoughts publicly as a mirror for his own feedback as well as a way of encouraging others.

“I’m having a good year right now. What will next year bring? I don’t know, but I’m not focused on that. I’m focused on following the protocol we’ve developed, and enjoying my activities while enjoying my family and friends.”

Thank you, Dr. Compton. I’m sure many will find good information and hope from your experience, both professional and personal.

Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

PS1 My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

A Path Revealed.Hi-Res-9%.jpg

PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

PS3 I’m sticking this 65-cent Alzheimer’s fundraising stamp on all my mail. It was introduced Nov. 30, 2017. Through its first four months 2,196,087 stamps have been sold to raise $280,486.21 for Alzheimer’s research; these net proceeds go to the National Institutes of Health. To see how using these stamps one-by-one can add up, the cancer fundraising stamp has to date raised almost $90-million for research. Join me and thousands of others and Help Stamp Out Alzheimer’s.

The stamp2.jpg

Why I Went Public with Our Family's Alzheimer's Story

My story is not your story, and your story is not mine. But by sharing our stories we can learn from each other, and help each other.

My book A Path Revealed came out October 2016. Since then, I’ve shared our family’s story in a variety of ways, such as through media interviews and this blog. I’ve also spoken with Alzheimer’s groups, book clubs, libraries, church groups, and civic clubs. I’ve traveled to Atlanta, Knoxville, Raleigh, Alabama, Nashville, South Carolina, Cookeville (my hometown), Asheville, and of course here in Tampa Bay. I’ve talked with audiences secular and religious, including Catholics, Presbyterians, Episcopalians, Methodists, and independents.   

After talking and listening to so many people, several issues have come into sharper focus for me.

Family collage2.jpg

For instance, when caring for my wife Martha I paid little attention to the magnitude of Alzheimer’s impact. Its shock on our family consumed all my energy and focus. So I was startled to learn that Alzheimer’s is growing in epidemic proportions nationwide, with burnout rampant among those caring for their loved ones. Today, about 22-million people in the U.S. are directly affected, including those disabled and their family caregivers. The Alzheimer’s Association expects that number to grow to 28-million within seven years unless there’s some intervention. (Just in the last two months, I’ve learned of four friends who’ve been diagnosed with Alzheimer’s or some other potentially debilitating form of dementia.)

As if those statistics aren’t harsh enough, I have a gut feel that the fear of this insidious disease is growing even faster.

  &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Source: Alzheimer’s Association

                                                                Source: Alzheimer’s Association

All my life I’d thought that illnesses and diseases were physical issues to be dealt with as such. (I suspect I’m not alone in this thinking.) But I found out soon enough that with Alzheimer’s—as with most serious crises—there are embedded emotional, psychological, and spiritual issues that I had to recognize and resolve as best I could if my family and I wanted any sense of wholeness.

Issues like fear, guilt, stigma, confusion, bitterness, anger, depression, and alienation. Martha and I experienced these and more as we struggled with the disease’s precipitous symptoms. One particular image was especially vivid and frequent: Seeing my life and our family’s fractured into a thousand pieces on the floor. I’d been thrust into a caregiver’s role that I was unprepared for and, frankly, I didn’t want.   

One more thing has come clear: A crisis like Alzheimer’s is agnostic. It doesn’t care what you believe, or don’t believe. It doesn’t care whether you worship at church, synagogue, the mosque, or the beach. Or whether you worship at all.

I’m convinced, though, that if our family had not found some way beyond our own resources, some power, this crisis would have crushed us. Consequently, Alzheimer’s is not the focus of our story; it’s the context. The focus of our story is the spiritual odyssey that unfolded over the course of 17 years. Martha was diagnosed in 1997 at the young age of 50. I was 52, and our children were still in high school and college. She died four years ago this June.

 &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;   China.org.cn

                                                                             China.org.cn

In telling our story, I emphasize the word “odyssey” rather than the more conventional term “journey,” which seems too tamed and planned for a crisis like Alzheimer’s. Our experience was an odyssey in the classical sense: You wake up in a foreign land. You’re lost, you’re confused, and you’re hurt. You want to get back home. You’ll do anything to get home. You’ll go anywhere. And when you do get home—IF you do—you find that home is not the same place as when you left. And you’re not the same person.

I write and share our story through the words and concepts of the faith tradition I’m familiar with—Christianity. But sharing our experiences in these terms has nothing to do with trying to be theologically correct … and everything to do with trying to survive.

Words matter. But the truth behind the words matters more. I’m certain that the spiritual insights gained by our family can be found through any authentic faith tradition whose source of goodness transcends the human ego. Insights like needing to forgive yourself and your loved one; being released from the shame, guilt, and stigma still so prevalent with mental disabilities; having the humility to permit God’s love to permeate and transform the fear and depression that runs so deep.

Reflecting on our 17-year odyssey I was forced to learn things I’d never realized before, such as: There’s a vast difference between believing in God and in believing God.

A mere belief in God doesn’t cut it when you see your wife collapsed on the floor in a full seizure. I needed something more, something that arises from the deep recesses of our hearts and minds, yours and mine. I needed to experience the warm, healing movement of God’s Spirit. So did Martha and our children.    

If you’ve read my book, you may remember that Martha and I visited a warm, gifted nun in Kentucky three weeks after Martha’s diagnosis. During our week’s visit, we set out on a path, but one that I didn’t recognize until long afterwards. Sister Elaine’s parting words to us were: “Your main calling at this time is to trust that you belong to God and not to yourselves. And to deepen your love for God and between yourselves.”

I remember thinking, so naïvely: “That should be easy enough to do.”  

Regardless, I now suspect Sr. Elaine’s strong, comforting words can hold true for anyone, religious or not, who’s undergoing their own serious crisis, by embracing her words, turning them over and over in your hearts and minds, letting them set a direction.

One other person’s advice also lifted me through many a frustration:  “Remember, Carlen, be gentle on yourself. Be gentle.”

By going down this spiritual path, am I saying we ignored Martha’s doctor and the physical aspects of this disease? No. Martha and I stayed close to her neurologist throughout and followed his direction. He was knowledgeable, he communicated clearly, and he was empathetic to our plight. With our agreement, Martha was enrolled in an experimental drug program being conducted nationally, which ultimately was declared ineffective. Martha also was prescribed a med that hopefully would delay the degenerative impact of the disease; it may have helped for a while.

As a whole, the medical and research community could offer little to no hope for Alzheimer’s in 1997, and little to none now. In short, since the causes of Alzheimer’s have yet to be determined no solution appears near.     

I thus began to explore any links between the physical symptoms of this disease and the embedded emotional, psychological, and spiritual issues that I’ve referred to. Stress as a possible culprit quickly surfaced. That may seem obvious today, but it wasn’t to me 20 years ago. The chaos that stress could create on the physical body came sharply into focus. That and the fact that such stress often is precipitated by longstanding fear and resentment.

I now understand much better the corrosive, destructive, chaotic nature of fear. There’s truth in Job’s words: “For the thing that I fear comes upon me, and what I dread befalls me.” (Job 3:25 RSV).

Several books by medical doctors proved helpful to me early in our crisis. Some were controversial when they came out, but many of their ideas are more mainstream today:

  • Dr. Herbert Benson’s Beyond the Relaxation Response. A cardiologist who was a pioneer in mind-body research.
  • Dr. Hans Selye’s The Stress of Life. An endocrinologist and pioneer researcher into the impact of stress on the body’s immune system.
  • Dr. Carl Simonton’s Getting Well Again: A Step-by-Step, Self-Help Guide to Overcoming Cancer for Patients and Their Families. An oncologist researching the impact of emotional and psychological issues on cancer.
  • And Norman Cousins’s Head First: The Biology of Hope. This longtime editor of Saturday Review magazine was the only layman at the time invited to be on the UCLA School of Medicine faculty.

I also went searching far and wide through a variety of spiritual traditions. Occasionally I’ve been asked, “Why?” My answer: “When you’re desperate you’ll go almost anywhere and try almost anything that does no harm.” And I was desperate.

We don’t have the time or space to get into all those endeavors, many of which I do share in my book. But one spiritual practice was especially potent early on for Martha and me: Being still long enough to meditate silently. Sister Elaine had suggested we check into meditation.  

At the time, Martha and I led hectic lives, between raising three children, Martha’s political and civic involvements, and my launching and publishing a regional magazine. 

Alzheimer’s forced us to slow down; it also raised our anxiety level a hundredfold.

After awhile, the practice of silent meditation helped cause our level of fear and anxiety to subside. Martha and I would sit side-by-side, holding hands. I quietly said the word we had chosen to repeat. We did this for 15-20 minutes in the morning and again in the evening as best we could, repeating our word over and over. There’s nothing magical about it. The mentor we followed, a Benedictine monk named Father John Main, describes meditation as being “extraordinary in its ordinariness.” His goal was to move the practice of meditation outside the monastic walls into the busy lives of those of us trying to make a living, raise a family, and enjoy our friends.

 &nbsp;&nbsp;&nbsp;  Fr. John Main (1926-1982)

    Fr. John Main (1926-1982)

The diminishment of our anxiety over time was real and it was vital. Surprisingly, a level of intimacy also arose between Martha and me that we’d not experienced in our 25 years of marriage. I often felt we were wrapped in a warm blanket of calm and joy. I sensed Martha did too; her grin and re-emerging confidence told me so.  

These are some of the reasons why I’ve chosen to go public with our family’s story. Feel free to draw from our story as you wish, or not.  

Let me close with this: Regardless of your faith, whether you are religious or non-religious, whether you are spiritual or secular, do everything possible to prevent Alzheimer’s, or any other crisis, from consuming you and your family. Too often it does. Instead, seek that reality that can help you transcend your crisis, and rest in it.

Even though our immediate crisis has passed, I still seek to rest in our God and in our ever-deepening friendship. Sometimes I find rest, sometimes I don’t. Regardless, there’s value in the search itself, there’s strength and wholeness.

Thanks,
Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

PS1 My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

A Path Revealed.Hi-Res-9%.jpg

PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

PS3 I’m sticking this 65-cent Alzheimer’s fundraising stamp on all my mail. It was introduced Nov. 30, 2017. Through its first four months 2,196,087 stamps have been sold to raise $280,486.21 for Alzheimer’s research. The net proceeds go to the National Institutes of Health. To see how using these stamps one-by-one can add up, the cancer fundraising stamp has to date raised almost $90-million for research. Join me and thousands of others and Help Stamp Out Alzheimer’s.

The stamp2.jpg

The New Alzheimer's Stamp Is Off to a Strong Start

Dear Friends,

If you've read my recent posts, you probably are aware of the fundraising stamp issued last November for Alzheimer's. Here’s a quick update on the results since that launch, from December through March.

The stamp2.jpg

This comes from Lynda Everman, one of the two caregiver advocates who through a combined 27 years of effort helped make this stamp a reality...

“Last week I wrote to Mark Saunders who works in public relations at the U.S.  Postal Service and asked when we might see some figures as to how much the new Alzheimer’s Stamp has raised in its first four months on the market. Here are those results...

“Since its November 30, 2017, release 2,196,087 stamps #AlzheimersStamps have been sold to raise $280,486.21 for National Institutes of Health (NIH) funded Alzheimer's research! Together we can—and will—make a difference. Help Stamp OUT Alzheimer's!”

Based on these numbers, each 65-cent stamp delivered 12.77 cents to the NIH. To get a glimpse of how using these stamps one-by-one can add up, the cancer fundraising stamp, which has been out for several years, has to date raised almost $90-million for research.

I’m buying this stamp for all my mail, business and personal. I encourage you to buy it too. This is an inexpensive and effective way to help raise the profile of Alzheimer’s disease while raising money for much-needed research.

You can purchase this stamp at any Post Office. And PLEASE tell your friends about this stamp and/or forward this email to them.

We’re off to a strong start.

Thanks,
Carlen
carlen@carlenmaddux.com 
www.carlenmaddux.com

PS1 My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

A Path Revealed.Hi-Res-9%.jpg

PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

Why This Neurologist Became a Hospital Chaplain

Until now, I hadn’t met someone who’s both a neurologist and a pastor. Bill Holmes, M.D. and M.Div., is one of a kind. And it’s through these lenses of experience that Holmes—shall I call him Dr.? Or Rev.?—shares his stories in his new book, Thoughts from the Bedside.

But don’t be deceived. Holmes’s experience goes much broader and deeper than his professions. For he also is the survivor of four separate cancers; and he grew up in a family ensnared in urban poverty in his hometown of Louisville, KY.

Holmes, who after 40 years of medical practice is now serving as a hospital chaplain in Louisville, has a lot on his mind as an author and occasional poet. His thoughts range from death and dying to the collision of cancer with faith; from environmental racism to the church’s acceptance of the mobile poor, or not; from random judgments about heaven to wildernesses of hope. That should give you a smattering of the insights found in his book, which I find impossible to pigeonhole. Is this a medical book? A pastoral care book? Essays indicting poverty and racism? Or a poetic ode to living with cancer? Consider it all of the above.

On occasion, I give a book away, and this is one of those occasions. More on that later if you’re interested.

  Bill Holmes, neurologist, pastor,&nbsp;&nbsp; author, and occasional poet

Bill Holmes, neurologist, pastor,   author, and occasional poet

Holmes’s most poignant moments, for me, find him at the bedside of those on the verge of death. Reading between the lines I could all but feel the instincts of this educated man of the cloth crying out to the medical technician within: “Do something, for God’s sake!” But with heartfelt humility learned from years of realized limitations, Holmes did what he knew best. This successful, respected doctor and chaplain leaned in and listened. It is in these moments that I sensed both the afflicted and the listener were set free from the ravages of fear. If I dare say it, I sensed both were healed.

Holmes writes: “Not long ago I sat at the bedside of a woman who was quite ill with kidney failure. Upon noticing ‘pastoral care’ on my identification badge, Margaret asked about my church affiliation. I explained to her that…I tend to leave that identity at the door. I am there for any person from any church or no church. She immediately replied, ‘No church? That is my church—no church.’ Then she told her story.”

Bill was a neurologist for children and adults from 1973-2007, except for a year in which he took off starting in August 1993. “I was getting burned out from 1988 on. I call that year off ‘my journey into the wilderness.’” 

He returned to practice for more than a decade before hanging it up in 2007. Meantime, he began night courses at the Louisville Presbyterian Theological Seminary and completed a Master of Divinity there in 2010. He began serving as a hospital chaplain in 2011.

  Bill and wife Joyce with Elmo and the grandkids in the fall of 2016

Bill and wife Joyce with Elmo and the grandkids in the fall of 2016

Intrigued by his insights as well as by his unique career mix, I had a few questions of Bill:

Me: What would you as a chaplain tell yourself as a neurologist, if you could?
Bill:
Sit longer with your patients, and listen more.

CM: Practically speaking, do you think you could have done that given all the pressures on you?
BH:
I’m not sure, but I would like to have tried.

CM: You’ve survived four separate cancers. Over what period of time did they occur?
BH:
From 2010 to 2016. First, there was prostate and bladder carcinoma; then colon polyps; and finally multiple myeloma. And then there was my open heart surgery in 2002 in which I had every complication but dying.

As I said in my book, “I’m white, wealthy, and insured. Otherwise I’d be dead.” (He argues for better medical coverage for all.)

CM: How did you react to these? Were you scared?
BH:
 With the colon surgery, I was afraid my luck had run out. I would immerse myself in all the medical literature, trying to intellectualize what’s going on. After a couple of weeks I’d finally decide okay, let’s get on with it.

I also became one with the Old Testament psalmists. I was pissed off at God and I let him know.

CM: As a neurologist, what were the toughest situations you faced?
BH:
Not being able to give a family an answer for why things are as they are with their child. Even worse was having to give the family a bad diagnosis.

I recently saw the mother of a child I’d diagnosed with an incurable situation. She told me, “I hated you when you told me the news. Your words burned deep. I still can’t get over it.”

CM: As a hospital chaplain, what are some of the toughest emotional issues you see…with the one ill and with the families?
BH:
Two things. First, encountering someone who’s just learned of a new diagnosis. The sick person, though, often does a better job with the news than their family.

Second, is being with an older person who’s having to go through the end of life by themselves, with no family or friends around.

Thank you, Bill. I’ll close with these statements from your book, Thoughts from the Bedside  
“My experiences of the last few years suggest that we as a society often fail the dying as they draw their last breath alone. We have allowed technology to either distort or redefine how we relate to each other.”

“In medicine I have found the more that is written about a subject, the less we actually know with any degree of certainty.”

“Likewise, speculation about afterlife and heaven may bring forth a wealth of print but rarely produce answers that will meet either the demands of the heart or of human reason.”

“Again, we in the church and halls of medicine cannot be dismissive of questions surrounding death and afterlife. As one pastor with a shrug of the shoulders said, ‘These are simply matters of the heart that people have to work out. I don’t believe there are any answers.’”

  The Foreword is by noted Biblical scholar and author Walter Brueggemann

The Foreword is by noted Biblical scholar and author Walter Brueggemann

If you’d like to put your name into the hat for this book’s giveaway, here’s how:

  • Anyone is eligible, whether you subscribe to my newsletter or not. Simply send an email to carlen@carlenmaddux.com between this Wednesday, March 28, and Friday, March 30, by 12:00 Midnight EDT. Indicate that you would like to be included in the drawing and put in the subject line: BOOK GIVEAWAY.
  • One person will be selected at random from those entering. I’ll send you a congratulatory email on Saturday, March 31. You will have 48 hours to respond to my email. If I don’t hear back from you by then, someone else will be selected at random.
  • For more details, click Book Giveaway.

~~~~~~~~~~~~~~~~~~~

I had a good visit two weeks ago in Raleigh, N.C., where I shared the story of our 17-year odyssey through Alzheimer’s with about 100 thoughtful and engaged folks at White Memorial Presbyterian. It was great catching up with friends Jan and Rev. Art Ross, Dr. Landy Anderton, and Steve Swayne. They were among my manuscript’s two dozen advance readers; Art wrote the Foreword to my book.

I will be on the road again after Easter for a couple of weeks. I’ll be sharing our story in Athens, AL, with the Mid-South Chapter of the Alzheimer’s Association (Thursday, April 5) and then the next day with the local Rotary Club. Afterwards, I’m off to Atlanta where I’ll meet with a class at All Saints’ Episcopal Church in Midtown Atlanta, right near my alma mater Georgia Tech. That will be at 10:15 a.m. on Sunday, April 8. Then Thursday evening, April 12th, I’ll meet with about 40 members and guests of the Women Alone Together book club.

Thanks,
Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

PS1 My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

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PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

PS3 I’m sticking this Alzheimer’s stamp on all my personal and business mail. About 10 cents of the 65-cent cost goes to the National Institutes of Health for research. It’s an easy and inexpensive way to invest in our nation’s wellbeing and future. Join me and thousands of others and Help Stamp Out Alzheimer’s.

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How She Learned the Art of Contemplative Care

“In the beginning, I cared for my mom out of a sense of responsibility. After eight years, my feeling had turned to complete, unconditional love.”

Beth Reinert was seeking to describe the often circuitous route she’d traveled during her mother’s last years.

For the longest time, Beth says, she couldn’t understand why her mom Marilyn, by then without a voice, loved to hold a ball, often kissing it. “I finally realized that this ball was her ‘baby.’ When she kissed the ball, she was kissing her child…”

“…who was me.”

Our conversation paused.

  &nbsp;&nbsp;&nbsp; Beth Reinert with mother Marilyn Redwood

    Beth Reinert with mother Marilyn Redwood

Gaining such poignant insight “requires a lot of attention,” she says. “Momma lost her ability to speak so I had to use all my detective skills. I had to train myself to not just react to the challenges but to give a lot of thought to the problem or behavior that was being presented.”

A number of revelations came to Beth deep in the night when she was sleeping. That’s if you want to call sleep being half awake, with the problem and possible solutions tumbling over and over in your mind. “A light bulb often would go off, helping me resolve the issue at hand.”

“I guess you could call this contemplative care.” Beth describes this process as a mixture of thought, worry, and prayer. In fact her term contemplative care is reflective of the concept of ‘contemplative prayer,’ which is marked by silence and listening while trying to let your many scattered thoughts abate and deepen.

Today, Beth views herself as a full-fledged advocate for caregivers. She lives in Mobile, AL, with her husband Jeff. They have two adult sons. She’s active on social media with a website, CaregiversUnite—a place where caregivers share, learn, and exchange; a Facebook page; and a Twitter feed--@BethReinert. Beth also manages a Dementia Friendly Alabama project in Mobile, sharing dementia friendly practices in faith communities. She recently organized a successful day-long caregivers’ conference called Dementia Perspectives, which drew nearly 150 persons.

  &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Beth and Jeff with grandson Solly

                     Beth and Jeff with grandson Solly

Equally important, Beth spends considerable time talking individually with caregivers, especially new ones, who are looking for support, resources, and ideas. “I remember all too well what wasn’t available when my mother began to decline.” It was 2008 when Beth felt compelled to take over her mom’s care.   

“I try to make myself visible to others in the community. The Area Agency on Aging is most supportive.” She speaks to community groups and has even developed a ‘caregiver toolkit.’ “Every person’s situation is unique and I try to be mindful of that. Some people are at peace with where they are; others are in need of education and a listening ear.”

I asked Beth several more questions…

Me: Your caregiving and advocacy work appears to be a “calling”. How long have you felt that? 
Beth:
Most of my life. Growing up I tended to carry the concerns of my family in my heart. When my mother’s back went out, I was there to help. We didn’t always feel that close, but when there was a need I showed up. In college I majored in Therapeutic Recreation, which subsequently led to a job as the activity director in a nursing home special care unit.  

CM: You say that from your professional training you knew what was coming over the next few years, after starting to care for your mother in 2008. So you were able to keep your emotions stable and in check, to not be caught by surprise?
BR:
Oh no. Although I covered my grief with a thin shell of strength and calm, in reality I was feeling fragile and distressed. It was a lonely time. Seeing my smart mother slowly succumb to Alzheimer’s disease often left me feeling helpless and ill equipped. 

Early on, we began the delicate dance of helping Momma where needed while focusing on her abilities that remained. At times I was frustrated by her choices, like finding the mail piled up in unexpected places; or agreeing to donate money to phone solicitors; or joining book clubs that I would have to undo.

I had to learn to be patient on long trips to the grocery store. I was better at that if I wasn’t hungry. And I had to remind myself that this outing was providing more than groceries. This was Momma’s way to get out of the house, interact socially, and move her body and mind in a way that was therapeutic.

  &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Beth sharing with her mom near &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; the last stage of Alzheimer’s &nbsp;

        Beth sharing with her mom near
          the last stage of Alzheimer’s
 

I was always concerned about doing things that would be most beneficial for her, becoming proactive on every front. It was almost like I was trying to hold back the disease by doing everything for the best possible outcome.    

Finally, during a tearful exchange with a friend at the Y something was said that changed my perspective. She said, “Everything is as it should be.” As those words sunk in, I began to think this was no surprise to God, and all I could do was the best we could. I began to hold on to Bible verses like “With man this is impossible but with God, all things are possible.” (Matthew 19:26 NIV)

CM: How did this insight help you?
BR:
As we overcame challenges I began to feel empowered and ready for whatever came next. After caring for my mom for three years, I learned of my aunt’s situation—she was in memory care and her husband was dying of lung cancer. My uncle accepted my offer to help, and taught me what I would need to know before he died, which was a month later. Although I now had two people to care for, I felt it a great privilege to be entrusted with the care of my aunt, who was my father’s sister. Both of these women’s care and quality of life became a personal ministry for me, and I felt confident that God would be with us every step of the way.

By now, I was beginning to find my voice as an advocate and became an ambassador for the Alzheimer’s Association.

Beth’s mother died at age 91 in August 2015, and her aunt the next month at 95.

CM: Was your family supportive while you cared for your mother and aunt? 
BR:
My husband Jeff was fully supportive and enabling. As were our sons Ivory and Simon, who had moved out of the house by the time Momma needed assistance. (Simon, a filmmaker, posted the video on Beth’s website to vimeo and Upworthy, where more than 30,000 to date have viewed it.) My sister Alice and I probably are closer than we might have been otherwise. She and her family helped where they could.

CM: Any final thoughts you want to share?
BR:
I had to go through several stages of learning, despite any advance preparation I might have had. The first goal was to put my mother’s legal affairs in order: 1) we met with an elder law attorney to make sure we had a good plan; 2) we developed an “advanced directive” to make sure my mother’s medical treatment wishes were clear; and 3) we took steps to avoid probate after her death.

Next, Momma’s personal safety was my biggest concern. As her needs progressed, we had to make decisions regarding her long term care, which led us to placement in assisted living, memory care, and finally in skilled care. As we relied on others to help care for Momma’s well being, my top priorities were her quality of life, knowing she was loved, and that she was without pain. This went for my aunt as well.

The most important lesson was this: Caring for a loved one may seem like an interruption at first, but giving such care could turn out to be the greatest opportunity of your life. I can’t think of a better lesson that I’ve learned than learning to love unconditionally.

CM: Thank you, Beth, for sharing your experience with us.

~~~~~~~~~~~~~~~~~

I’m participating in a webinar next Wednesday, April 7th at 7:00 pm EST. It’s part of a “Meet the Author” series and themed: A Path Revealed: If a family in my church or group is struggling with dementia or Alzheimer’s, what can I do? This webinar is made available by Practical Resources for Churches. If interested, please register for the webinar by clicking on this link. If you can’t watch at this time but would like to see the recording later, click on the same link.

Thanks,
Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

PS1 I’m sticking this Alzheimer’s stamp on all my personal and business mail. About 10 cents of the 65-cent cost will go to research. It’s an easy and inexpensive way to invest in our nation’s wellbeing and future.

The stamp2.jpg

PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

PS3 My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

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After 27 Years Their Steadfast Dream for an Alzheimer's Stamp Turns True

Baltimore, November 30, 2017 — “The Postal Service is proud to issue this stamp today to help raise public awareness of Alzheimer’s,” said Postmaster General Megan J. Brennan. “Proceeds from its sale will help support urgently needed medical research into this incredibly debilitating disease.”

The ceremony to unveil this fundraising stamp for Alzheimer’s was simple and direct.

Getting to that day, however, was anything but.

It would not have happened without the iron-willed tenacity of two women who cared for their stricken husbands for too long to keep count. Altogether, the two clocked a combined 27 years before seeing their dream of this stamp become reality.  

Hundreds of emails and letters to the nation’s top elected officials; shoe leather worn thin walking the halls of Congress; treks into the bowels of the postal bureaucracy; scores of rejections reversed through artful diplomacy; 84,777 petitions signed from all over the country. This is but a sketch of the effort needed to get this Alzheimer’s stamp approved and printed.  

If you wonder how two women who had been wounded and hurt by a debilitating disease could make such an immense difference, meet Kathy Siggins and Lynda Everman. You’ll soon see, though, that this colossal effort is only the first phase of their endgame.

  The Warriors:&nbsp;Lynda Everman, left, and KathySiggins storm Washington

The Warriors: Lynda Everman, left, and KathySiggins storm Washington

But before sharing Kathy’s and Lynda’s stories, let me give you a quick rundown on this Alzheimer’s stamp. Officially it’s called a “semipostal” stamp, which means it’s a fundraising stamp. Its first-class rate currently is 65 cents, with approximately one dime (net of all costs) directed to Alzheimer’s research via the National Institutes of Health (NIH). 500-million stamps were printed for its two-year life. If there’s not enough interest, the Postal Service can pull the stamp before two years. It can be found at most post offices or at the online Postal Store or by calling toll free 800-782-6724.

At the stamp’s unveiling ceremony, Congressman Elijah Cummings (D-MD), who lost a neighbor and brother-in-law to Alzheimer’s, spoke directly to Kathy: “I want to thank you, Ms. Siggins. I know you worked a long time for this. It’s hard. I know it’s hard. You know what you did, don’t you? You took your pain and turned it into a passion to do a purpose. You took the pain you were feeling and then went on out and did things that will affect generations yet unborn.” Kathy was given a standing ovation. (You can see the ceremony by clicking here. Mr. Cummings’s address begins at 18:00 and his remarks to Kathy at 27:00.)

  Congressman Elijah Cummings and Postmaster General Megan Brennan unveil the Alzheimer's stamp. Kathy Siggins and Lynda Everman stand to Ms. Brennan's left.

Congressman Elijah Cummings and Postmaster General Megan Brennan unveil the Alzheimer's stamp. Kathy Siggins and Lynda Everman stand to Ms. Brennan's left.

In the beginning there was only Kathy Siggins. She and her husband Gene lived a normal middle class life in Mount Airy, MD, an hour’s drive north of Washington, D.C. She and Gene met while both were working in the headquarters of the U.S. Postal Service (USPS), from which she resigned in 1983 to raise her children.

But in 1985 that “normal” life began to change. “That was when I noticed some changes in Gene,” says Kathy. He was 57. Three years later he took early retirement. But he wasn’t officially diagnosed for another two years, in 1990 when he was 62.

“We’d never heard the word Alzheimer’s before. As a caregiver, I felt helpless and lost; my life was consumed with caring for my husband.”

 &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  Kathy with Gene

                  Kathy with Gene

While still caring for Gene, Kathy began to ease into advocacy, helping start a walk team in 1994. Since then, she personally has raised more than $92,000. “In 1997, when I started sharing our story, my son asked me, ‘Why do you want to open our lives to the public? Do you think one person can make a difference?’”

“I said something like, ‘I don’t know but if we don’t talk about it, no one will ever know what it’s like to live with this disease.’” Not long afterwards, Kathy made her first visit to Capitol Hill in 1998. “And I haven’t stopped since.”

Seven months after Gene’s death in January 1999, Kathy attended an advocacy forum that began to brainstorm on ways to raise awareness and serious money for Alzheimer’s. It was there that someone mentioned a stamp that was raising money for breast cancer research. “It didn’t sound right to me,” says Kathy. “I worked at the post office and had never heard of a stamp that was raising money for research.”

“I decided to check into it, and if true I wanted a stamp for Alzheimer’s.” The stamp for breast cancer research was dedicated in 1998, and to date it’s raised more than $87-million.  

She visited the USPS official who replaced Gene as the Director for Procurement. Kathy quickly learned that the Citizens Stamp Advisory Committee receives approximately 50,000 requests each year for dedicated stamps. Undaunted, she began a letter-writing campaign only to learn that the committee had already rejected a semipostal stamp. “I was told there’s not enough national interest in Alzheimer’s.”

“I’m going to show them that there is,” Kathy vowed, and started her petition campaign.  

Little did she realize that the road ahead would consume 18 frustrating years of her life. In a recent TV interview: “I was told ‘No’ an awful lot of times,” said this proud mother of eight and soon-to-be grandmother of 25. “And the disappointment…I went through a lot of disappointment each time people said ‘No.’”

In the meantime, Lynda Everman was living across the country working at the University of California-Irvine as a Human Resources Consultant. Her husband Richard also worked there as the Director of Applied New Technologies. In 1997 Richard was diagnosed with mild cognitive impairment (MCI), which puts one at an increased risk for Alzheimer’s. He was 57. “There’s nothing mild about it,” says Lynda.

 &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  Lynda with Richard

         Lynda with Richard

All told, between caring for Richard and her father, who began showing signs of dementia in 1994, Lynda was a caregiver for 18 years. She had given no thought to being an advocate. She didn’t have time, plus “we both were introverts and very private people. I was intent on protecting Richard’s privacy and his dignity. We were moving through a situation that was too painful to address in public, and I wanted to do nothing that would add to his discomfort.”

As virtually every caregiver knows, to say this was a difficult period is an understatement. “When I think back to those years,” says Lynda, “I don’t think in terms of ‘caregiver burden.’ I think of a deep pervasive sadness.”

Subsequently, in late 2002, Lynda and Richard moved to Maryville, TN, south of Knoxville, and in 2009 he entered an assisted living facility (ALF). “By then it had become apparent to me that Alzheimer’s could claim one or both of our lives. I knew I could no longer sustain my level of care.”

“It was the most wrenching decision of my life. I basically had to move Richard ‘behind his back’ without telling him of my intentions.”

When Richard died several years later, Lynda says she posted their picture on Facebook with these words, “Rest in peace, my beloved husband, and know that I will not rest until there is a cure.”

“I intend to keep my promise.”

Not long after moving Richard into the ALF, Lynda slowly began to pivot from her shell of privacy to public advocacy. That was early 2010. Besides public speaking and taking trips to the state capitol, she also began her own campaign for an Alzheimer’s semipostal stamp.

Lynda was inspired by Susan G. Komen’s sister who almost singlehandedly started the breast cancer movement. So Lynda began a letter writing campaign to anyone she could think of. “I wrote to all the living Presidents and First Ladies, and to every celebrity I could think of. I incessantly promoted the breast cancer stamp as a model for an Alzheimer’s stamp. I didn’t know what I was doing, but I said to myself, ‘Oh well, I’ll just do it.’”

One day Lynda went to the local post office. “And being something of a smart aleck, I asked to buy an Alzheimer’s stamp. I knew full well that there was none available. To my surprise, the clerk said I could probably Google that in their ‘retired collection.’” She went online and found Kathy Siggins’s name associated with a short-lived commemorative stamp (non-fundraising) for Alzheimer’s, which had been issued in 2008. Importantly, she saw that Kathy also was pursuing a semipostal stamp.

Lynda found Kathy on Facebook and asked to be her ‘friend.’ That was April 2012. “I’m generally shy,” says Kathy, “and I don’t like to respond to such requests from people I don’t know.” But for some reason she did. “That turned out to be one of the best ‘friend requests’ I’ve ever had.”

They agreed to call each other that night. “Lynda and I immediately clicked. We talked for two hours. Finally, I met someone who had my passion!”

  Kathy with a few of her 84,777 signed petitions

Kathy with a few of her 84,777 signed petitions

It was about this time that Lynda created the Help Stamp OUT Alzheimer’s Facebook community to gain visibility. (Twitter link @helpstampoutalz). “We needed the support of other individuals as well as the major advocacy organizations in order to make substantial progress.”

In 2013 Lynda visited Kathy. “We wrote and delivered 60 letters to members of the Bipartisan Congressional Task Force on Alzheimer's Disease and other influential committee members.”

May 2013: “Kathy and I blitzed the Capitol,” says Lynda, “hand delivering personal letters, telling anyone who would listen that we were caregivers who lost our husbands to Alzheimer’s and who were now advocating for increased funding for Alzheimer’s research and for a fundraising stamp.”

“Kathy even followed members of Congress into the elevators and stairwells so we could talk to them!”

Kathy calls herself the “tortoise” and Lynda the “energizer bunny.” Over the course of two decades, Kathy has learned every nook, cranny, and corner of influence in the halls of Congress, at the USPS headquarters, and at the NIH. (“I don’t know every nook and cranny,” Kathy says, correcting this writer.) Lynda, in addition to partnering with Kathy, is a founding member of three national networks, all under the umbrella of UsAgainstAlzheimer’s: ActivistsAgainstAlzheimer’s, WomenAgainstAlzheimer’s, and ClergyAgainstAlzheimer’s. Kathy joined Lynda in these advocacy groups. Both women have remarried, Kathy to JD Brooks and Lynda to Don Wendorf.    

Along the way, Kathy and Lynda were guests on advocacy forums, webinars, and seminars. And they ultimately gained the support of the major national advocacy organizations, including the Alzheimer’s Association; the Alzheimer’s Foundation of America; the American Academy of Neurology; UsAgainstAlzheimer’s; and the National Active and Retired Federal Employees Association (NARFE).  

So what’s next for these two warriors?  

First, they say, they are doing everything in their power to promote this Alzheimer’s semipostal stamp.

“The sale of this stamp is so important,” says Kathy.

The stamp2.jpg

Here’s Lynda’s perspective on the stamp’s art design: It’s both appropriate and symbolic. It features an older woman with dementia, while a caregiver rests a hand on her shoulder. The clouds signify the confusion and challenges of Alzheimer’s and dementia while the sunlight signifies hope. Those of us who have experienced loved ones with dementia understand the juxtaposition of light and dark, despair and hope, helplessness and determination. It is our hope that by facing this disease together and advocating for better care, treatments, prevention, and a cure that all of us will have the strength to reach these goals.

The two believe the stamp’s success could greatly influence Congress to pass legislation that would extend the life of the semipostal for an additional six years, similar to the reauthorization of the breast cancer stamp. That would help deliver more research dollars while continuing to raise the public awareness of Alzheimer’s and its destructive aftermath.  

The effort and organization required to make that congressional bill succeed is another story unto itself. And Lynda and Kathy are well along that path.

When Kathy went public with her family’s story in 1997, the NIH budget for Alzheimer’s research was approximately $325-million; it’s now $1.4-billion. The “ask” today is for $2-billion, which researchers say is the minimum needed to accomplish the ambitious goals  of the National Plan to Address Alzheimer’s Disease,  one of those goals being “to prevent and effectively treat Alzheimer’s disease by 2025.”

I asked Kathy and Lynda what those reading this post could do.

Their response: “We would love for every advocate, caregiver, family member, and friend who has been touched by this disease to buy the Alzheimer’s stamp and to use it exclusively on all your mail. Purchase extra sheets to give as gifts to raise awareness that this disease is affecting one in every three U.S. families. There has been too much suffering by too many for too long. It’s only when we’re able to bring this conversation out of the shadows and into the national spotlight that we will be able to make the progress that is sorely needed toward better care, treatment, and prevention.”

Thank you, Lynda and Kathy, for sharing your inspiring stories and for taking the lead that you have. If interested, you can reach Lynda by emailing her at ldeverman@icloud.com, and Kathy at siggimax@mindspring.com. Subject line: Postage stamp.

And thanks to you who are reading this for doing what you’re able to do.

Let’s just do it!

~~~~~~~~~~~~~~~~~~~

Yesterday, Tuesday January 30th, Bill Gates was interviewed by Maria Shriver on NBC’s Today show. During the four-minute interview, Gates discussed what he wants to see done with the $100-million he’s donating to Alzheimer’s research and advocacy. Gates also revealed for the first time that a driving motive for his interest is his 92-year-old father who’s been diagnosed with Alzheimer’s. Ms. Shriver’s father, Sargent Shriver, died from the disease.

Thanks,
Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

PS1 I’m sticking this Alzheimer’s stamp on all my personal and business mail.

PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

PS3 WFTS-TV 28, ABC Action News Tampa Bay recently interviewed me for a five-minute segment. If interested, you can click here.

PS4 My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

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Alzheimer's Communication

I saw this recently on Facebook regarding best practices for interacting and conversing with those disabled by dementia and Alzheimer’s…

  Never ARGUE, instead AGREE

Never REASON, instead DIVERT

Never SHAME, instead DISTRACT

Never LECTURE, instead REASSURE

Never say “REMEMBER”, instead REMINISCE

Never say “I TOLD YOU”, instead REPEAT/REGROUP

Never say “YOU CAN’T”, instead do what THEY CAN

Never COMMAND/DEMAND, instead ASK/MODEL

Never CONDESCEND, instead ENCOURAGE

Never FORCE, instead REINFORCE

Nothing more needs to be said other than this is a keeper.

~~~~~~~~~~~~~~~~~~

I’ve had friends occasionally ask how they can help fight Alzheimer’s financially. Of course there’s always your favorite Alzheimer’s charity. But if you haven’t heard, there’s now an inexpensive, highly effective way that became possible in December. And that’s the new Alzheimer’s postage stamp.

AZ Stamp4.jpg

It costs 60 cents, about a dime more than the regular first class stamp. That dime goes to the National Institutes of Health (NIH) for Alzheimer’s research. Every little bit adds up, especially if the Post Office sells all 500-million stamps it printed. So put this stamp on all your bills and letters. I am.

An interesting story lies behind how this stamp came to be. I’ll share this with you soon.

I hope you had a good holiday season.  

Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

P.S. As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

P.S.S. My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

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Remembering the Forgotten

I hadn’t planned to send you another post until 2018. But I couldn’t let this one get by today, on the Eve of Christmas.

In my post ten days ago, I shared with you why Dr. Richard Morgan stepped into the world of Alzheimer’s.

Morgan4.jpg

Richard wrote this two days ago on UsAgainstAlzheimer’s… Christmas: A Time to Remember the Forgotten Among Us.

I think this is worth sharing today. I hope you do, too.

May this season be a time to slow down, catch our breath, look around, and find the meaning in all our relationships.

Warmly,
Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

Why He Steps into the World of Alzheimer's

“In the final analysis, the experience of loving a person with dementia is a unique, mutual spiritual path. It is a spiritual path in which we learn to love generously, without constraint, without praise or thanks, sometimes despite a slap in the face. It leads us to our own freedom.”

That’s Dr. Richard L. Morgan, Ph.D., talking in his book No Act of Love Is Ever Wasted: The Spirituality of Caring for Persons with Dementia.

“Reaching this point spiritually is not easy,” this retired minister and counselor concludes. “It requires self-care; it does not ask for martyrdom.”

I caught up with Dr. Morgan—who co-authored this book with Dr. Jane Thibault of the University of Louisville’s School of Medicine—after learning of his long involvement with Alzheimer’s and dementia patients. Richard’s decades of experience resonates with key aspects of mine as I cared for my wife Martha over 17 years.    

  &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Dementia advocate Dr. Richard L. Morgan

        Dementia advocate Dr. Richard L. Morgan

As mentioned before, I’d always thought that illnesses and diseases were physical issues that needed to be treated as such. But when our family was flattened by Alzheimer’s, I began to understand that this insidious disease also is embedded with emotional, psychological, and spiritual issues that need to be recognized and dealt with however we can—as are other crises. Both victim and caregiver can be gripped by fear, guilt, bitterness, alienation, depression, and stigma. Not to mention that dark secret we caregivers carry that I shared in my last post.

Richard recalls the time he learned that dementia patients live in their own world. He was a nursing home chaplain then. “As I attempted a homily during a worship service, a woman blurted out: ‘This is the nearest to nothing I ever heard in my life,’ and promptly wheeled out of the chapel, followed by most of the residents. That soon ended my homilies for people with dementia.”

Richard spent most of his career as a Presbyterian pastor in Morganton, NC. In his spare time, he authored or co-authored 23 books. Retired at 62, he now lives with his wife in a continuing care community outside Pittsburgh, where he volunteers to help in the memory care unit, visiting 40 residents or so with Alzheimer’s or related dementia who “live in comparative isolation.” Now 89, Richard “feels God’s call to be their advocate and caregiver. And this calling has become my passion in my retirement years.” He’s also a co-founder of Clergy Against Alzheimer’s, a multi-faith network of UsAgainstAlzheimer’s

I’ve yet to read No Act of Love Is Ever Wasted (2009) but I’ve looked closely at enough excerpts to know it would have been a valuable resource were it available in 1997 when Martha was diagnosed. As a consequence, I’m making it available this week as a free book giveaway. More on that later.

I asked Richard what he’s learning from his experiences with dementia… 

Me: How has your approach with dementia patients changed over the years?
Richard: Back when I was a nursing home chaplain, I followed the staff’s concept of “reality” when they asked their residents such questions as What time is it? What’s the weather like? Who’s the President? What’s going on in the world? I failed to understand that people with dementia are NOT involved in the present; they are living in another world. The staff was locked into the medical model, and I went along with that although I tried to be a friendly visitor.

Now what works surprisingly well for me is being able to help people remember their past. I use pictures of their family, pictures from Reminisce magazine and from other places to help trigger their long-term memory. It was a year or so ago that I began to use Lester Potts’ art work with amazing results. People who never spoke or who talked in garbled language became lucid. 

Note: The late Lester Potts was a saw miller in rural Alabama who’d shown no talent or interest in art until after he was diagnosed with Alzheimer’s. Samples of Potts’s art are shown below; more can be seen at www.lesterslegacy.com. Richard co-authored the book ‘Treasure for Alzheimer’s’ to show ways in which dementia patients have reacted to these paintings. He shares his insights in a short YouTube conversation with Dr. Daniel Potts, the son of Lester and a distinguished neurologist and dementia advocate in Tuscaloosa.

Lester Potts birds1.jpg

(You may remember that a passion for art also blossomed in my wife, which prompted a resurgence of Martha’s confidence.)

CM: Humor arose from time to time when interacting with my wife. Have you encountered any in your relationships?
RM:
Yes, one couple comes to mind. Both the husband and wife had dementia. The husband asked me to help him get a divorce, and his wife asked me to help her marry him.

CM: What’s been your toughest assignment?
RM:
Even though I’d been a Hospice chaplain, being present when a resident was dying is the hardest.

CM: What do you see as the most important need for a person with dementia?
RM:
To consistently visit them while being a friendly, non-anxious presence. This is especially true for residents whose families rarely if ever visit.

Also, from a spiritual point of view, it’s vital to connect in ways that acknowledge their souls (or spirits) are still present, even if their minds and verbal skills may not be. For example, if I’m with a person of Jewish heritage, I may share a Star of David or a Menorah. With a Christian, obviously the cross of Christ, or we may sing a well known hymn like Amazing Grace or The Old Rugged Cross.

CM: Are the emotional and spiritual issues of a patient and caregiver being addressed any more today than when you were first involved with dementia?
RM:
I helped start a caregiver support group here nine years ago. I’ve listened to their heart-wrenching stories of the burden they bear for their loved ones who suffer from this disease. Caregivers tell me they’ve found legal and medical assistance, but nowhere can they find emotional and spiritual support.  

Lester Potts flowers1.jpg

CM: What do you consider your worst mistake?
RM:
Not following up on my visits. Since then, I’ve learned to be more intentional.

CM: From your experience, what are the most important things you would emphasize to a caregiver?
RM:
First and foremost, take care of yourself. You can’t care for your loved one if you neglect your own needs. I know this mantra has been repeated so often it’s almost a cliché. But it’s nonetheless true. Whatever your situation, try to get help. You can’t do it by yourself. Try to enlist family members and friends in the care. It’s not always possible, but it is essential.

Finally, commit to listening patiently to your loved one. Even accept their anger and dismay in a loving way. I know this can be hard to do, but somehow, some way it’s vital to your loved one’s health and wellbeing—and to yours as a caregiver.

CM: Finally, can you sum up what you continue to learn from those with dementia?
RM:
Live in the moment with them. Accept them where they are in their world, not yours. Never argue or contradict what they’re saying. Even use “therapeutic lying.” In other words, talk with them about whatever they want, whether you consider it to be true or not. Finally, this took me a while but I’ve come to understand that these persons are friends with souls, even if their minds are gone.

Thank you, Richard, for sharing with us your hard-won wealth of experience. There’s a richness of wisdom here that goes far beyond the issues of dementia.   

~~~~~~~~~~~~~~~~

If you’d like to put your name into the hat for the free giveaway of Richard Morgan’s book No Act of Love Is Ever Wasted, here’s what to do:

  • Anyone is eligible, whether you subscribe to my newsletter or not. Simply send an email to carlen@carlenmaddux.com between this Thursday, December 14, and next Wednesday, December 20, by 11:59 PM EST. Indicate that you would like to be included in this month’s book giveaway and put in the subject line: BOOK GIVEAWAY.
  • One person will be selected at random from those entering. I’ll send you a congratulatory email on Thursday, December 21. You will have 48 hours to respond to my email. If I don’t hear from you by then, someone else will be selected at random.
  • For more detail, click Book Giveaway.
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May each of you have a wonder-filled Hanukkah and Christmas season that transcends any and all our biases and fears. I’ll be taking a break through this season. In fact, I just saw our 6-year-old Olivia Grace in a Christmas pageant; I hadn’t realized that Jesus’ mother Mary hopped around so much. And I heard 9-year-old Nelson give a speech on “What’s So Unique about Redheads.” Unique indeed. We’ll reconnect in 2018. 

Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

P.S. As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

P.S.S. My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon. Think about giving it to a friend or family member this season who’s burdened with a worrisome crisis.

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From One Caregiver to Another

A recent headline stopped me cold: “For those caring for a loved one with Alzheimer’s, burnout is rampant.”  

The more I publicly share our family’s story, the more caregivers are on my mind. Their role and needs often are overwhelmed by the needs of their loved one. Whether they are caring for a loved one with Alzheimer’s or some other disabling crisis that threatens the fabric of their family’s existence.

We caregivers carry a dark secret: We often feel that we’re failing both the loved one we’re caring for and our families. We too often feel that we’re failures. And we don’t want to discuss it. Yet we can’t afford to keep this secret hidden away. For buying into such feelings can lead a caregiver to quick and complete burnout. 

This being Thanksgiving Day, it seems appropriate to share a different kind of post. It’s a song about being grateful despite any sense of failure. So it’s to fellow caregivers who’ve known such pain that I’m sharing this Leonard Cohen classic, Hallelujah. And it’s also to you who are helping care for your caregiver friends and their loved ones. And for you who want to understand your friend’s needs.

This song elicits the memory of burnout threat I experienced over 17 years, yet its message of hope, despite all, touches me even more. The threat of burnout may not be a memory for you; it may be a clear and present danger instead. If so, may Cohen stir you as he does me with Hallelujah.  

As I listen to Cohen’s Hallelujah, memories of what our young family lost long ago rekindle. Memories of perceived failures reignite. Memories of hope extinguished ice my heart.  

Yet...

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Yet throughout the last two decades, a voice kept rising, kept calling me forward. It kept lifting me up, dusting me off, all the while whispering, “You’re doing good, Carlen. Let me carry you. Let me carry this. You are loved, Carlen. Be gentle on yourself.”    

Sometimes this voice went silent. But the memory of its encouragement was enough to get me through. Not unlike the way “hallelujah” carries Cohen through his success and his failure until he stands in the presence of his “Lord of Song,” offering the only thing he has to offer. 

This voice is what echoes in my memory as I let this song breathe through me, a song in which no amount of failure can choke the seed of joy, in which no amount of failure can silence the heart’s tongue from whispering in the dark, “Hallelujah.”

So this is my Thanksgiving gift to you … you who know of the pain I speak, whether it stems from Alzheimer’s or some other crisis. And if you find yourself crying as you let Cohen’s words stream through you, then cry fully. This song can be cathartic at the deepest level. It is for me as I also cry.

 Click here to listen > LEONARD COHEN'S 'HALLELUJAH'
(To read without watching and listening to Cohen can lose much of the meaning)

I've heard there was a secret chord
That David played, and it pleased the Lord
But you don't really care for music, do you?
It goes like this
The fourth, the fifth
The minor fall, the major lift
The baffled king composing Hallelujah

Hallelujah
Hallelujah
Hallelujah
Hallelujah


Your faith was strong but you needed proof
You saw her bathing on the roof
Her beauty and the moonlight overthrew you
She tied you to a kitchen chair
She broke your throne, and she cut your hair
And from your lips she drew the Hallelujah

Hallelujah, Hallelujah
Hallelujah, Hallelujah


Now, maybe there’s a God above
As for me all that I've ever learned from love
Is how to shoot someone who outdrew you
But it's not a cry that you hear at night,
And it is not some pilgrim who claims to have seen the light
No, it's a cold and it’s a very broken Hallelujah

Hallelujah, Hallelujah
Hallelujah, Hallelujah

Oh, people, I've been here before
I know this room, and I've walked this floor
This is … as you stood on it alone before I met you.
And I've seen your flag on the marble arch,
But your love is not some kind of victory march,
No, it's a cold and it is a very broken Hallelujah.

Hallelujah, Hallelujah
Hallelujah, Hallelujah

There was a time, you let me know
What's really going on below,
But now, now you never even show it to me, do you?
I remember when I moved in you,
And the Holy God was moving through,
And every single breath that we drew was Hallelujah

Hallelujah, Hallelujah
Hallelujah, Hallelujah


I’ve done my best, I know it wasn't much
I couldn't feel, so I learned to touch
I've told the truth, I didn't come here just to fool you
And even though it all went wrong
I'll stand right here before the Lord of Song
With nothing, nothing on my tongue but Hallelujah

Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah

Have a good Thanksgiving today.

Carlen
carlen@carlenmaddux.com
www.carlenmaddux.com

P.S. If you’d like to see my recent interview on a local PBS-TV station in which I share some of our family’s story, you can catch it here… http://www.wcte.org/one/

P.S.2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

P.S.3 My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.

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My Busy Three Weeks

Whew! I’m exhausted. I’ve just returned from being on the road for three-plus weeks. I spoke twice in Nashville, and once in my hometown of Cookeville, TN. Then I went to a conference in New York City. Here’s a quick recap…

First off, for my friends living in and around Cookeville...

When I was there last May, Becky Magura and I had a good conversation re. our family's story as told in my book, "A Path Revealed." President and CEO of Cookeville’s PBS station WCTE-TV (Channel 8), Becky decided to air our conversation in November in recognition of it being National Alzheimer's Month. If you're interested in seeing it, she tells me it will be on every Thursday this month, starting Nov. 2. Time: 8:30 pm. Based on my 30-year experience in print journalism, Becky is an A+ interviewer.

Also, there’s a link to the interview on WCTE's website if those of you living elsewhere care to see it … http://www.wcte.org/one/.

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In Nashville, Brentwood United Methodist Church was kind enough to host two conversations, first in a Sunday School class and then on Monday when 80 or so from the Alzheimer’s community attended. In Cookeville, I spoke again to my late grandfather’s church class, the Backsliders at First United Methodist Church. I won’t bore you with the details of our story, which many of you are aware of by now.

Well received in both places was the handout of my previous post, Because That’s What Friends Do.   

Two days later I flew to New York to something called the National Publicity Summit. Bradley Communications in Philadelphia has staged 29 of these conferences. Attending were 116 media reps and 100 people like me wanting to leverage their stories. Many were authors and/or consultants. One fellow I met was promoting bottled dirt and rocks from Pike’s Peak. “It’s all legal,” he told me. The media there ranged from ABC News and the Today Show to a small radio station in rural Washington to freelancers for a variety of national publications.

This was quick-time speed dating. We each were given 2-1/2 minutes to hook the media rep’s attention. I talked with 50 or so. Maybe five were not good fits. Another five I put to sleep. I stepped outside the hotel four times over four days. I spent 30 years as a print journalist and editor, so this whole process was a bit awkward for me. I’m used to people coming to me to write about them and their businesses.  

All I need to do is follow up with the most fertile prospects. It’s time to stop writing now to do just that…reminding these reps who I am and what our story is about. I’ll keep you posted on how this experiment works out.

Thanks,
Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

P.S. As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

P.P.S. My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be found on Amazon or ordered from any bookstore.

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Because That's What Friends Do

Caring for a loved one with Alzheimer’s can quickly overcome the caregiver. As you try to make your loved one safe, schedules can become a blur. What normally would take me ten minutes could mushroom into two hours. When you’re anxious, as I often was in the early years of our crisis, no detail at home or work was small. All loomed large. Too often I was forced into a corner, on the verge of meltdown.

From this kind of pressure was forged my Rule No. 1 for Caregivers: If you want to take good care of your loved one, you also need to take good care of yourself. It wasn’t that easy for me. Initially, I was either too shy about asking family and friends for help or too arrogant and dumb to think I needed help. Take your pick.   

I heard an idea earlier this year that I wish I’d been aware of twenty years ago. I’ve referred to it a few times in my blog posts. A Georgia Tech friend from long ago, Dr. Ed Anderson, told me about it when he shared his family’s story last February. He lives in Nashville.

About three years after Ed’s wife Bev was diagnosed with a form of dementia, she went grocery shopping and left her keys in the car. Coming out with an armload of groceries, she couldn’t find the car—it was stolen. So she proceeded to walk a mile or so home with groceries in tow. It was time for Bev to stop driving, Ed decided. But that also meant she’d be isolated at home.   

That’s when Bev’s good friend Karen Stevens stepped in. She talked with Ed about organizing a network of Bev’s friends who would take her on walks, go shopping, do lunch, go to movies, spend time together at home, and whatever else seemed practical and helpful. 

“Most of us worked in pairs,” says Karen. “It was easier to keep a conversation going and often more fun for Bev.”

Says Ed: “I don't know how I could have managed without the support of Karen and the rest of Bev’s friends. Knowing that she is with them while I'm at work has been priceless, giving me great peace of mind.” 

I discussed with Karen the model she set up for Bev and Ed so that I can pass it on to you. If you’re the exhausted caregiver of a loved one, I urge you to pay attention. If your friend’s family is struggling with Alzheimer’s or a similar crisis, figuring out how to help can be awkward. This idea can pay real dividends for all—victim, caregiver, family, and friends. If Karen’s model interests you, consider it a suggested template to be adapted to your own circumstance.

  &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Best friends forever, Bev Anderson and Karen Stevens

            Best friends forever, Bev Anderson and Karen Stevens

Had I heard about Karen’s model, I would have insisted on one thing: that all be friends of Martha with whom she was comfortable. As for who those friends could be—think book club, tennis or golf buddies, church circle, drinking and smack-talking buddies, whatever.

The best way to lay out Karen’s model is to ask her some questions and let her respond:

Me: Did you have trouble convincing Ed and Bev to do this?
Karen:
No, it was a win-win for all. Actually, Bev wasn’t involved in the decision. The discussion centered on Ed’s desire to keep Bev’s friends involved as long as possible and in a fairly regular routine with what was familiar.

 What are the first steps you took?

  1. I invited friends, neighbors, and Ed and his daughters to explore ideas for creating opportunities…as a friend, not as a caregiver.
  2. We selected a contact person responsible for sending the schedule out each week to those helping. That turned out to be me, which I wanted.   
  3. I constructed a template for daily/weekly visits. We initially worked in two-hour increments; since then, the time frame has reduced.

How selective were you in picking friends?
This was the easy part. There were no specific criteria. Bev’s close friends—neighbors, tennis buddies, and school teachers—were eager to participate. Bev was an avid tennis player. She also taught for many years in a private school. These were the natural starting places.

Did her friends need training on how to deal with someone in Bev’s condition?
No. But as the dementia progressed we would share with each other what seemed to be working and what wasn’t. Group members would ask how to handle a certain situation—how to redirect a conversation, react to a particular behavior, etc. I’m no expert, but after attending several Alzheimer’s and dementia groups and conferences, I realized that common sense was my friend. There were no set rules or steps to follow; just ‘being there’ was enough. A nod and a smile appeared to be worth a hundred instructions. After all, don’t we all want to be acknowledged?

Additional questions centered on whether leaving Bev alone for any length of time was OK, then we realized that even 15 minutes alone might spur a concern. Would she be safe inside her house?  Would she go for a walk in the neighborhood or possibly outside her familiar territory? She hasn’t been a ‘wanderer’ but that can probably change on a dime.

What type of activities did your team and Bev enjoy?
Walks around Radnor Lake park, at the mall (especially on rainy and cold days), and in the neighborhood. Also classes at the YMCA. Going to a movie and out to lunch. Blackberry picking and baking cookies. We’ve had to drop some of these as the dementia progressed.

Ed’s still working full-time as a physician. How do you keep him in the loop?
He and I usually talk on the weekend before I send out the schedule. He informs me of Bev’s upcoming appointments or times that he needs covered because of his own schedule. 

Does Bev have paid caregivers at home now?
Yes, so we also coordinate with them. And there are two excellent day care programs here in Nashville that Bev goes to regularly—one called Sunny Day that’s sponsored by local churches and another at an assisted living facility that’s something of a national model, called Abe’s Garden.

How long has your model been working? 
We’re starting our third year. Participating friends have changed, but we don’t have as many time slots to fill today as when we started.  

How much time did it take you to set this up? And to maintain it on a week-to-week basis?
Creating the template took several revisions. I wanted to make it user-friendly for the team, but also for me. The initial draft probably took an hour. I set it up on a word document but you can also use an Excel sheet. I probably spend a half-hour a week maintaining it, primarily coordinating with Ed.

What’s been the hardest part for you?
Relaying to Ed what others had experienced during their visit with Bev as well as what my own experiences have been. Some are good to talk about, others are difficult, such as body odor, argumentative, restless, rambling thoughts, etc. Emotionally it’s too hard for me to talk to Ed in person about my best friend, so we usually talk on the phone.

What’s been the easiest?
Creating the template. I’m a ‘chart maker’.

What would you do different if you were to start over?
Initially I’d ask more friends to participate so the time commitment for each would be less. Now it actually is less as the disease progressed. We'd started with about a dozen friends.

 Knowing what you know now, would you do this again?
Absolutely…what greater gift to my beloved ‘first friend in Nashville’ and to her family than to help in some small way? Being with her and knowing she would have been there for me in the same circumstance fills my thoughts. The smile on her face and the big hug she gives me are priceless. Through my tears, I know we’ve connected and loved each other unconditionally. I’m grateful for our time together and for her friendship.

Would you recommend this to others? 
Yes!  It’s a “gift that keeps on giving”—an invaluable present from one heart and soul to another.

Thank you, Karen.

I repeat myself: I wish I’d known of a program like this back in 1997 when Martha was diagnosed with Alzheimer’s. Martha’s friends and family helped early on but it was more random than regular. I have no doubt they would have helped further if I or one of Martha’s good friends had asked.

Carlen Maddux
www.carlenmaddux.com
carlen@carlenmaddux.com  

P.S. As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

P.P.S. My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be found on Amazon or ordered from any bookstore.

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