Pandemic aside, Anne’s insight is a powerful reminder for anyone caring for a person with dementia. I have witnessed care partners at times feeling hopeless, bitterly asserting there is no joy nor meaning whatsoever to be found, given the challenges their loved one is experiencing.
I do understand where those feelings come from. Space must be allowed for people to have them, and hopefully to work through them. That said, I humbly beg to differ with the belief that hopelessness is all that’s ahead once a person has dementia. As humans, we all have the capacity to feel loved, honored, appreciated, comforted, uplifted, amused…the list goes on. Even if we have dementia, we feel a myriad of emotions. We can still remember how others make us feel. We can be moved to tears. We can giggle uncontrollably, or a little (intensity of expression will of course vary, person to person), we can admire beauty outside the window, and we can know somewhere deep inside what and who we love, have loved and still love, even if we cannot put it all into words that make perfect sense.
Dementia does not destroy our desire to help others, to connect deeply, or to give and receive affection. It does not destroy our spirit.
Sure, all this is easy for me to say. I do not personally have a diagnosis of dementia, at least not yet. And I certainly have not known every single person with dementia. I started working with persons with dementia nearly 20 years ago, if I count the interactive storytelling activity I did with my mom and her cohorts when she first moved into a memory care community. For going on six years now, most of my work has been training others about dementia care. I have a lot more contact with staff who provide care than I do with care recipients.
Happily, I am currently helping with activities in a memory care community two mornings a week. I feel excitement, energy and relief when I am directly connected to people living with dementia. This current experience has brought back memories of many individuals with whom I’ve worked. These folks taught me 95% of what I know about dementia care.
The holiday season always drives reminiscence, especially this year. Here are a few memories I‘ve been mulling over regarding this topic of joy, meaning and challenge.
- My friend Irene was sitting in her wheelchair, feeling very grumpy indeed. She was worried, and prone to complaining. I tried to cheer her with “Well Irene, you know what they say – when life hands you lemons, what are you supposed to do?” She looked at me crossly. Then, her grumpy face morphed into the visage of a mischievous sprite as she proclaimed, “Make whoopie!”. We laughed heartily. I believe I may have been the more cheered!
- Ruth was a tall and vibrant woman with sky-blue eyes, and stylish, chin length, straight white hair. Most of the time, Ruth spoke in complete gibberish. Janice was diminutive, thin and short. Her hair was mousy gray and she didn’t have much of it. Janice was ever so gentle. She always spoke in a breathy whisper. I discovered Ruth and Janice sitting together when I entered the Activity room one quiet afternoon. They were both transfixed by baby doll Janice cradled in her arms. Janice held that baby as though it was the most precious thing in the whole wide world. She whispered, barely audible, as she gazed into the baby’s eyes. Ruth looked on, beaming. When I walked closer to them, Ruth looked up at me and quietly, yet delightedly remarked, “She has the most beautiful mother!” (Not a shred of gibberish to be found in that utterance!) I was deeply moved to have borne witness to this moment of connection between these two friends.
- During snack time in our memory care dining room, Mary, who was often upset, alone, and out of sorts, was the first to arrive. In as sunny a voice as I could muster, I asked her whether she’d like lemonade or Coca-Cola, her two favorite options. She looked at me with annoyance and loudly blurted out, “Just say hi!”. I was suitably embarrassed. I dutifully said “Hi, Mary!”, apologized, and sat down to chat with her a bit more.
I learned that Irene’s sense of humor was deeply intact. I saw how Ruth and Janice found a way to connect that defied their respective communication challenges. I understood that Mary’s righteous indignation was thoroughly justified by me not bothering to give her the human dignity of a hello before plunging into my task. She knew what treatment she deserved as a human being, and she still had the bravery to stick up for herself.
As the vaccine for COVID-19 has entered the picture and provided some hope on the horizon, some of you may have wished, “Ah, if we only could have a vaccine for dementia!” Yes, that would be great! But as that is not likely to happen anytime soon, I encourage you to vaccinate yourself against hopelessness by committing to stop expecting LESS of these folks, even as dementia progresses. Rather, let us commit to exploring and supporting strengths and skills, surprises and joys, meaning and spirit. May our hearts open to new ways to keep connecting with the people in our care during this holiday season, during this pandemic, and evermore.
Blessings for you and your loved ones.
--Marysue Moses, email@example.com