“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.
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.
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.
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.
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.