How my parents’ dementia is teaching me to grieve
I was at mom and dad’s today, as I am nearly every day, though today I was in and out far more than usual because I’m having a standby generator installed for them. That is another story entirely, but my many visits led to many more interactions with my mom than in a typical day.
This story is one I could repeat with varying shades nearly every day as well, though. I think it’s a story of slow grieving, and of slow acceptance, and of how my own personality traits are coloring and shaping that process, both for me and, especially for mom.
Dementia: the word thief
If you’re reading, you probably already know that both of my parents have dementia. Different forms, to be sure, but dementia nonetheless. Mom’s version is stealing her ability to communicate, along with her ability to deal with complex (or, now, even not-so-complex) processing. Dad’s flavor initially targeted his gross motor skills, but now, he too seems to have lost his language.
Today, however, was just like so many days with mom: she needs or wants something but can’t, for the life of her, dredge up the word she needs to convey her objective.
I made my last trip as the contractors were leaving, to make sure she understood where we were in the generator installation process. I also knew I needed to double-check that the basement sliders (where the contractors were in and out all day) were closed and locked. Even though she’s still pretty solid with those things, that’s not a chance I’m willing to take.
A strange game of charades
It was in the context of closing the doors that she began telling me something. I knew three words in that I was going to be playing our near-daily game of “pin the tail on the sentence.”
It’s usually pretty clear that she’s observed something that needs to be addressed: a light bulb is blown out; a faucet is leaking; she needs a new blind for a window. Rarely, however, can she muster the right words to explain what she wants.
I realized just now, for the first time ever, how much this goes on. I also just realized that she told me she wanted to put a screen into one of the windows next to my father’s bed without once using the word, “screen,” or even the word, “window.” I think I intuited where she was going by the fact that we’d been in the utility room in the basement, where all the window screens are kept. Seeing them there triggered her process.
She began explaining and lost her trail a few words in. She managed to convey the idea of “next to dad’s bed.” I started tossing out nouns, none of which were right, but as I did, she got a few more words out with me prodding her, laughing to cut her frustration. (Almost always, I laugh when she can’t find a word. I do it naturally, but it works to break the tension.)
Acceptance first
I have no idea how many things she may have tried to tell me over time that I never grasped. When she’s struggling though, after I laugh, I always remind her that whatever it is will come eventually. She can just call me when she gets it. Or she can write it down and tell me tomorrow.
I think maybe the pressure relief helps. I know I’m trying to give her the gift of acceptance.
The stages of grief
In the classic stages of grief, one passes through four typical emotional realms: denial, anger, bargaining, and depression, before finally coming to acceptance. I’m pretty certain mom is bouncing around between denial and anger for her own condition. The laughter does a decent job of defusing her anger; helping her to accept, and deal with, her word-loss.
I’m nearly as certain that I’ve made it through all the stages already, for both of my parents. Maybe it’s been a subconscious coping strategy. I think it’s in the act of accepting these smaller losses that I’m preparing for the biggest ones of all.
13 Comments
Poetic–and poignant. So moving. Thank you, Marcia, thank you.
The grieving process is a unique one indeed. Thanks for reminding us all to enjoy our parents (those lucky enough to still have them) as they are, not as they were. And within that process, prepare. Xo
Yes!!! “As they are, not as they were.” Perfect.
Beautiful and moving read. Thanks for sharing~
I may have told you before that my mother had Parkison’s and the resulting Parkinson’s Dementia. As ‘they’ say…Take it one day or visit at a time. I was always grateful that she always knew who I was. That, I think, would be hardest to bear. You are a strong woman. Stay well.
Thanks Nancy— I’ve already come to terms with her (and/or dad!) forgetting who I am. Dad, I think, sometimes already does, and I see hints of it with mom, too. It’s just another part of the progression of this group of afflictions. My job, as I see it, is to keep them both as happy and comfortable as I possibly can. If (when!) they forget who I am, I’m training myself to be ready. I’m just so grateful to have the caregivers we do – they really help me keep my sense of self, and sanity!!!
A beautiful, moving and honest perspective Marcia. Your parents are very blessed to have you. Thank you for sharing.
Thanks Ellen!! XO
When this first came out I wrote a lengthy response but apparently it was not accepted. Don’t know if this will go through. Marco
Hi Marco! I will double check for it — I think I remember seeing/approving it. Hang on…
Very strange, Marco — I can’t find a trace of it, which is bothersome, to say the least— I always appreciate your thoughts!!!
Marcia, in my earlier reply I stated that I was struck by your empathy. So many narratives from caregivers dwell largely or even solely on the toll and the difficulties they themselves are feeling. You help us understand the difficulties your parents are having, and thereby enhance our understanding of what you are going through.
I would offer this: As you know, I’ve spent a career in Thanatology and worked personally with Elizabeth Kubler-Ross. Elizabeth did not intend for people to interpret her paradigm as sequential stages. Indeed, people skip back and forth and even practice some deception for the sake of others (acting as if they are in Denial or Anger when in fact they are in Acceptance. I’ve had numerous patients tell me privately they are fine with their diagnosis but are putting up a show for their family).
Nonetheless, I hope you have resources such as discussion groups available and that you will avail yourself of them as needed. (Even if you don’t think you need it). Marco
Thank you as ever, Marco!! I definitely have some excellent resources/“outlets” available, which I take advantage of from time to time, though I find that often in groups, as you noted, the focus ends up going down the “woe is me” path. I do also have several one-on-one relationships with friends going through similar, though unique, challenges, with whom I’ve developed what I feel is a good balance between venting and helping.
And yes – your clarification of Kubler-Ross’ intentions, once you noted it, had a familiar ring for me — both because I’d read about it in the past, and, of course, because the reality rings quite true!! Thank you for bringing it back to my attention!!