Every day a little death
In the parlor, in the bed,
In the curtains, in the silver,
In the buttons, in the bread.
Every day a little sting
In the heart and in the head,
Every move and every breath
(And you hardly feel a thing)
Brings a perfect little death.
I’m borrowing from the lyrics of one of the best Stephen Sondheim musicals, A Little Night Music. The subtext of the song is that the character who sings it believes that each day of her marriage some small part of her dies.
Dementia is, in a way, like that. Every day another moment, another day, another week, another month or year get lost to the person who suffers from that particular affliction. Names, locations, dates, times, routines, favorite foods, favorite articles of clothing, favorite holidays – none are immune. Mom frequently asks me where I live, how I ‘got’ my children, even how old I am. Quite a change from hearing so many times over the year how difficult it was to even get pregnant and how tough the pregnancy was and how she worried and worried daily after being told she’d either miscarry or I’d be born with some kind of physical or mental deformity. From that to ‘how old are you?’ What a change. What a sad, miserable change.
Mom and I still are (despite my lapse in blogging for nine months) talking nearly every day, save for when she’s not near her phone or the demands of parenting on my own now prevent me from calling her. I sometimes wonder to myself what part of her might be disappearing on those days, and had I been able to reach her, what might she have said, or revealed that now is likely forever lost….when will she say ‘Who’s this?’ instead of ‘Hi honey, how are you?’
I realize that one day, perhaps, one of those casualties may be knowing who I am. She still knows she knows me, and many days knows I’m her son. We talk about good days, bad days, and all the in-between. She still trusts me, and listens to me, and talks to me about whatever comes to mind.
Several times recently Mom has talked about her mother and father (who passed away in the 1960’s) and not always in the past tense. She has said that her mother and father were in the same facility she was in and the staff remembers her as a young girl visiting them there and that’s why they treat her so well. At other times she talks about wondering when she will be able to go visit them, and how she’ll get there without owning a car (a mixture of 50+ years ago and 2 years ago when she lost her driver’s license). She began to talk, just the other night, about planning a trip to see them and then stopped herself mid-sentence, pausing for a moment before she continued on to a heart-wrenching conclusion.
“Oh no, oh what am I saying? They’re dead. Mom and Dad are dead…like Joe, and Laska, and Logan (her siblings) – they’re all dead. All of them. Jesus, what the hell is wrong with me?”
I offered no answer. What am I to say to her in a moment such as that? In a moment when she has to confront the deaths of her parents and siblings all over again, feeling perhaps as if it has just happened? The news has just been delivered. The grief, be it, in reality 15, 20, 40 years old…washing down over her again, sudden and absolute, unexpected and relentless, without the buffer of years or even decades of processing it and coping with it and reconciling it to spare her even a fraction of the pain. Sometimes she cries. Sometimes I do too, but I don’t let on to her about it. It’s for her pain I’m crying. I never met her parents. I never ‘lost’ them because I never had them in the first place. She did. And she lost them. And she has to relive that over and over again now.
To me, that’s one of the cruelest aspects of dementia and Alzheimer’s disease….not only forgetting the things you like and the people you love… but having to mourn the people you’ve lost over and over and over again because you forget, either momentarily or for a long period of time that they’re gone.
Every day a little death…some days a big one.
Over and over and over again.