Before I start this guest column, I feel compelled to explain the one I wrote in June. I’ve had more compliments on it than usual. I’m happy to know so many readers took joy and inspiration from it, but I want to clarify some important facts.
Some of you were relieved that I am revisualizing my situation in a more positive way by looking at the circumstances with curiosity and acceptance, rather than dread and depression. I used the mantra: “Ah, isn’t this interesting. This is what it feels like to be in this stage of Alzheimer’s disease.” The mantra has improved my outlook, but it isn’t a panacea. It’s not like I’ve crossed a threshold that keeps me from going backward into the darkness again.
It takes conscious determination to stay positive and curious. I’m fully aware that the dark side hovers, waiting for the opportunity to take over again.
Thank you all who care to read of my journey. Be patient as my writing becomes less cohesive. My writing reflects my thinking, which is in decline.
On to today’s guest column.
During a support group, I listened to caretakers discuss the difficulties in getting their loved ones with dementia to give up various lifelong responsibilities, such as family finances. Caretakers discussed taking over balancing the checkbook. Those with dementia said they felt frustrated at losing this way of contributing after doing it each month for years. They acknowledged making mistakes, but still felt sad about the loss. There was discussion about how a caregiver could balance the checkbook without their partner knowing in order to avoid hard feelings. One could hide the bank notice on arrival or secretly move to online checking. The ideas came with best intentions and full consideration of their loved one.
As caretakers were figuring out ways to ease the process, those of us with developing dementia interjected that it wasn’t about getting the checkbook balanced, it was about feelings. Specifically, each time we relinquish a responsibility or act of self-determination and autonomy, it feels like one more nail in our coffin. We are acutely aware that we have lost even more of our selves. We wonder what is left to take away from our former productive selves?
We have worked our entire adult lives, never with enough hours in the day and a whole slew of people dependent on our capacity to produce. There is everything from dinner to the syllabus for the semester or the committee report before the board meeting. There is the art piece we promised for the upcoming show and caring for the children so others could go to their jobs.
Suddenly, we find ourselves with very little to do. Our declining capabilities restrict ways to occupy ourselves as we are so used to doing, especially in retirement. Reading the great novel we’d never had time for is difficult or impossible because our eyes don’t track words well. Playing tennis is no longer possible because of lost motor skills. Using new recipes is not possible because our ability to follow a recipe is limited. The list goes on as more and more “can’t do’s” are added.
Our loved ones say we can’t balance our checkbooks. They are right. We can’t because simple math has become frustrating at best, impossible at worst. To give up even this small responsibility, this contribution to the family feels like a stab to the heart. What is our purpose anymore? We need help with things all day long, but what do we do to help others? Where is our self-worth then? Maybe even, why are we here? These existential questions are about so much more than whether the amount the bank says we have matches the sum in our checkbook.
Kim Martin splits her time between Hesperus and Durango, and is a former instructor of Asian history, writing and comparative cultures at Fort Lewis College.
