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.

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>>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.”

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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.

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