To Tell or Not To Tell: Grief and Dementia by Devon Miller-Duggan

My mother’s younger sister is dying of lung cancer. My mother doesn’t know and I hope, won’t, even after I take her downstate to see her sister on Monday. We, my aunt and I, have agreed that my mother knowing will serve no purpose. “Knowing” is a relative term in my mother’s case, because her dementia has progressed fairly far. The last death she “knew” about was her favorite cousin’s death 2 years ago. Several weeks ago, she asked me why she hadn’t heard from her cousin at Christmas this year and could I call to see if A____ was okay. When I explained that A had been dead for two years, my mother re-grieved her death. It was awful for both of us. For her because grief is awful. For me because one feature of my mother’s dementia is her increasing conviction that I have magical powers and can make everything in her life okay, if only I would stay with her for most of the waking hours of the day. If you’ve ever thought you wanted someone to think the sun rises and sets over you, don’t. Don’t want that. Because, trust me, there is not enough of you to fill that level of need. Or even to want to.

So I am keeping things from my mother. She doesn’t know that her post-divorce significant guy of 25 years (until she moved in with us 14 years ago because his drinking was out of control) died recently. She doesn’t know that my much younger sister is finishing up chemo for ovarian cancer. God forbid my sister should go down to her cancer, but if she does, God forbid my mother finds out. If I can manage things so that she doesn’t have to process any of this anguish she’s truly not capable of processing, then when she does die and goes to heaven, she’s likely to spend her first chunk of time there being surprised as all get out by who she runs into.

My elder daughter says (bless her) that my carrying these secrets is a mitzvah. I think it’s the best that I can do to protect my mother from pain she is not capable of processing, but I’m also pretty clear that it’s a matter of protecting myself from her desperate conviction that I can make it right. Whether that amounts to a mitzvah, I don’t know. At least it’s a word I can stand hearing. People are super-nice to you when they find out you have a parent with dementia living with you. They tell and tell and tell you, out of the utter generosity of their big hearts, what a wonderful thing you are doing, what a good daughter you are. The worst is people who have done the same gig with one of their parents who tell you that it was the best thing they ever did, how sacred the time was. It makes me feel broken, mean-spirited, bitchy. Because this is very definitely not the best part of my relationship with my mother. And I am more tired than full of love. But tired, broken, bitchy people can manage mitzvahs.

To mix religions, this business of secret-keeping mostly reminds me of one of the lines from the General Confession in the 1662 Book of Common Prayer (Episcopalian, for those who don’t speak the lingo). It’s talking about sin, which is not this secret-keeping. Still, the words sum up what this feels like: “… The remembrance of them is grievous unto us; The burden of them is intolerable.” The only thing that would be worse, and of this I am sure, would be telling her.

NOTE: Since I wrote this, my aunt has died. I’ve never seen cancer progress so quickly. The funeral my aunt planned in detail was lovely and full of graces and gifts. She’s been talking to her younger daughter steadily since her death (the women on that side of my family, well, we’re a little unusual…) and is full of joy and relief. I changed my mind and was going to tell my mother so she could go to her sister’s funeral. I thought I was settled with that. Then I changed it back again after talking to many of the folks I respect most. She’s been unsettled, and I wouldn’t be surprised to discover that she “knows” without knowing, which is not something I can control for. But she hasn’t grieved, or cycled in and out of brute knowing. For the moment, I think this is right. For the moment, this feels like I am acting out of love.

6 thoughts on “To Tell or Not To Tell: Grief and Dementia by Devon Miller-Duggan

  1. Devon, your pieces about your mother are so heartbreakingly honest. My Mom had dementia for 16-17 years before she died, and about 6 years in, her younger sister died suddenly. On the phone, she told me about her sister’s death and cried, but as the years passed, she seemed to think I was her sister (whom I resemble) instead of her daughter, and this gave her a lot of joy. She and her sister’d had a lively and fun relationship so when she saw me, she was happy. I wanted her to know who I was, and often it was painful that she didn’t know me (or maybe cataracts prevented her from seeing well) but most of the time, I was just glad to see her smile when I said her name. Anyway, thank you for this beautiful piece.

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