FINDING COURAGE AND MAINTAINING STRENGTH WHEN ALZHEIMER’S HITS HOME
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Ellie Gruber, a dear New Jersey friend, recently shared a holiday letter her brother Herb Cohen had sent to “family and friends,” thanking them for their love and help during the journey he and his wife Judy began nearly 15 years ago as Alzheimer’s changed their lives and daily existence.
Because I am aware of so many families facing and coping with this difficult disease, I asked Herb if I could share his letter with the readers of Wandering With Val. He said, “Of course.”
What follows could be a guide for those who have relatives just succumbing to dementia. It’s a reminder to friends of how they can help, whether dropping off meals, offering rides, paying short visits which are so welcomed by the primary caretaker. To me, Herb’s words are also a love letter, filled with gratitude for the good years he and his wife Judy shared and for the invaluable assistance and support he’s found in his home town of Kennebunkport.
He said to me, “I’m not sure how you want to introduce this. I originally just wanted friends to know that Judy was moving from home to long-term care. Then, as I was writing it, I realized it had become a letter of appreciation — backed with a subtle theme that anyone going through this is not alone; there are resources for everyone in each phase of the illness.”
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December 30, 2023
Dear family and friends,
There is currently no known cause or cure for Alzheimer’s.
When someone you love develops dementia, it will eventually change just about everything about that person. What’s little known is that dementia is not a memory problem, it is brain failure. Judy was diagnosed with dementia sometime around 2009. Faced with this disease hidden inside Judy, I found there wasn’t much I could do about it, so I chose to commit myself to her care.
Even with moments of surprise, frustration, and becoming upset, it was never a burden for me to become her caregiver. The one constant in her ever-changing condition has been my ability to change as her condition changed. There have been times when it hurt, times when I felt I’ve run into a brick wall, and times I’ve made mistakes. Turns out that when thinking for another person, it doesn’t always work out the way you have planned. So as Judy’s condition changed, not so easily and with a lot of help, I have been able to change along with her.
Shortly after Judy’s initial diagnosis, she was asked to participate in a trial for a new Alzheimer’s medication. The medication was to add protein to the brain through injection. It was a multi-year and rigorous trial. In the trial’s fourth year, we learned Judy received the full dose. The medication did not pass the trial and was not approved; however, several benefits resulted from her participation in the trial. It slowed the progression of her symptoms and provided valuable time to allow me to adapt, learn and plan. Those are not just words; it gave me the time and space to better prepare for the inevitable next levels of her inability to understand the world and process incoming information. It made it easier for me to change and grow along with her.
I’ve been lucky! Yes, very lucky. The trial was just one aspect of my good fortune.
The other piece of the puzzle has been YOUR help and support. You have helped me with guidance, education, listening, and caring all without judging or intolerance.
First our daughters, Barrie, Beth, Sue and Ali, and of course their spouses and our wonderful grands. Sibling relationships can be tricky and unproductive. In our case, watching the girls work together, listen and support one another on Judy’s and my behalf has been a joy. To me but I also know somewhere within Judy’s awareness and happiness, she sees this. I am proud of my family and love them very much.
Over the years, I slowly sought help to give me some relief. At the beginning, I wasn’t exactly aware of what relief meant and I continued doing my job as Judy’s primary caregiver likely resulting in little relief. I visited the Alzheimer’s Center in Scarborough, collaborated with agencies, and spoke with Judy’s neurologist. While that was all somewhat enlightening, it was not what I needed.
I then discovered A Place to Start in Kennebunk where Judy and I participated in activities. APTS founder/director, Sally Tarte spent time with Judy and time educating me. Sally became a touchstone and resource (Marie and Diane too) for me and introduced me to Susan Raychard, a very special OT who specializes in dementia. Susan came weekly, spent time with Judy and became my guru (which she still is). She rounded up additional caregivers and showed them how to care for Judy. From Susan, I learned what relief meant and how I could spend my time more productively.
Susan also gave me a copy of Teepa Snow’s book (DEMENTIA CAREGIVER GUIDE), which has helped me in writing this letter. It’s been an invaluable guidebook for seeing the unique and precious moments within dementia’s progression. It helped me to let go of what is missing in Judy while learning to use and enjoy what remains, to make life worth living until the end of the journey.
So yes, I’ve been very lucky. Judy and I have been able to enjoy over a decade of joy together, even with her on-going progression. Please take a moment to recall your times with Judy - - regardless of how ordinary or insignificant they may seem. From my point of view, each encounter was more significant than the last and that means so much to me. I know and appreciate every touchstone and know it helped to slow the progression of her dementia.
Until only recently Judy was going to Quest Fitness a few times a week. One other activity for Judy was volunteering at the Graves Library. Imagine! This was all to do with the kindness of library director Mary-Lou Boucouvalas. She worked together with Judy at the library and she responded to every last minute request when I needed coverage. I also learned a lot from Mary-Lou from her experiences.
Mary-Lou was only one. I found that spending time listening and sharing information with others who had first hand experiences with loved ones who had Alzheimer’s was so important for my education and gave me additional courage and strength. (Thank you Paul M., Bob, Alex, Marge, Ann, Sally, Muffi, Stu, Carolyn, Paul E. and several others when at APTS.)
More recently, it’s taken knowledge and willingness to seek out new resources to get Judy into the position she’s in now. Namely: comfortable, safe, clean and happy. Amy Palmer, a nurse practitioner recommended by Judy’s primary care doctor, rearranged her meds and brought Hospice in for support and equipment. It’s made a world of difference. Our Town nurse, Kim, is always on call and provides critical support I didn’t even know I needed.
Meanwhile, I had a setback with my July surgery, putting me back in the hospital for additional surgeries and follow-up recovery in a rehab facility. During those weeks, our daughters were able to spend a lot of time here, but there was still a lot of time where the caregivers were on their own with little familial support. During many of those days, Maxine visited often on her own, helping with informed decisions. Maxine’s nursing background was needed almost daily by the caregivers and family. Another Angel.
Courage and strength also came from friends who kept in touch, dropped off an extra portion of food, included us, and most of all visited and loved Judy. Even her hairdresser of 20 years stayed with Judy and began coming to our house to cut and color her hair.
The poker guys, especially when I was hosting monthly and Judy made the rounds with touching, hugging and kissing a few times each evening.
Our UMaine classmates; Ann, Cynthia, Mickie, Jane, Berta, Frank, Richard, Jane and Ashley from the Alumni office. Few know that Judy was our class president for many years and when, as she began to fail, our executive committee and alumni office continued to support her and compensate for her. As I also helped her, it became easy for me to take over and continue to keep her involved within her limits. Judy was an outstanding student and leader who was very popular. Cute too!
This is the year that the late changes of the disease have progressed within Judy. Her brain is losing its ability to guide and direct her body. Her control system for movement, interacting and responding is failing. We still get a smile, a kiss on the hand, moments of fun when looking at photo albums and even a bit of movement (dancing!) when listening to music. She’s still here, but getting ready to leave.
Helping Judy walk one evening this summer I had a latest fall that resulted in a broken hip. After surgery, our daughters organized the 24/7 care for Judy and broke the news to me that I would no longer be Judy’s caregiver. Coincidently, I reached the inevitable (for me) moment when I said, “I’ve had enough.” We all agreed it was time for Judy to move to a long term care facility.
We then researched local facilities and selected the three where Judy would get the best care. A few beds have become available, but offered first to people within each facility’s community who have priority over a new person from the outside community. It’s now three full months of waiting for a bed and I know it’s difficult to predict when a bed will become available. So with Judy comfortable and in a good routine with outstanding care, we will continue with her home care as it is.
We all know it’s the end of Judy’s journey. We cannot hang on to fix the pieces or to change the bigger picture. Judy will not be distressed or in pain. She will be comfortable and cared for. I am back to being a husband again and grateful for the time to be together.
Wishing you and your family a Happy New Year filled with hope, health and happiness——with a generous helping of fun.
Herb
