Tag: Mom

Ma has an active social life, in her sleep. The line between sleep and waking is porous; she can spend a day waiting on someone that can never show up, like an eight-year-old waiting up for Santa.

When I don’t know where I’m going, it’s best to start, not at the beginning, but where I am. Except, for someone with dementia or caregiving for a loved one with dementia, where you are is a moving target.

Dementia steals your memory and your life, the progression slowly peeling away who you were. It is not, however, contagious. Nothing is contagious via the telephone. Uncomfortable making that phone call? Try shuffling through life in her slippers for a while.

Q: What do alcoholics and addicts say all the time? / A: Leave me alone, I’m not hurting anyone but myself.

Even after thirty years of twelve steps, I’d been underestimating the impact I had on her life. Then our lives were thrown against a wall of dementia like a handful of spaghetti, and I got to see what stuck.

Aimless. With no clear plan of going somewhere, no “there” to get to, there is also no clear plan on how to get home.

There are words that make me sad: Ma looks me in the eye, “You’re really so good to me.” Sometimes followed by an “I love you.” Does she, or are those words part of her survival plan?

They say if you want to make God laugh, tell him/her your plans. Her doctor said, “Starting thinking about plans for palliative care.” That’s not funny, God.

Object Permanence is the why in why Peek-A-Boo is such a blast, why babies are surprised AF every time you appear again. The other end of the spectrum I call Object Impermanence in adults with dementia. That rock solid knowledge that when something or someone is out of sight or sound, that thing or person is simply…gone for good and for ever.

There is no aide today, only Big E & me. Tomorrow is our anniversary, Ma and me living together for the last two years. Both still alive, older and tireder than when we started. Outside, there’s a raging pandemic & it’s 90-hell-degrees. Inside, we have each other.

Today is Day 7 of working from home (WFH), of  online meetings, of no one else to be there for her other than me. Social distancing is the new normal. I’d always considered myself her sole caregiver, but it’s become very apparent that that was not exactly accurate. There were aides, therapists, social workers, random alter kakers. Now, it’s all me. And the occasional phone call from someone she loves but cannot remember.

Big Edie Benjamin Buttons along, forgetting all the every-day things I’d learned from her, the things that make up a life, she  tries to re-learn living, from me. What’s lost will never come back. I can’t fix it or slow it down. Instead, I honor our lessons, reminding her who taught me to read a recipe & cook; clean a house properly; put on lipstick and that it’s okay to enjoy sex.

The MMSE measures cognitive loss. I know Ma’s getting worse, but held on to the years we called it “mild cognitive impairment,” blaming any decline on the questionnaire. Like all standardized tests, I was sure they were asking the wrong questions. Rather than measuring decline and failure, reinforcing her belief she’s become “a nothing,” let’s meet our elders where they are now by asking the right questions, measuring what she does know and can do.

In a life where nothing is certain, I am an anchor. I’d envisioned lots problems, becoming one half of conjoined twins–attached at the heart–wasn’t one of them. She’s losing/has lost the ability to think of things she’d like to do without prompting. Everything you thinks of as your life up to this moment? Imagine that, but gone.

There is a very short list of things I avoid with Big Edie– they just lead to pointless, never-ending, no-one-is-happy circles. God. and Fred. Everything else is fair game.

Everyone needs something to live for. My mother lives for the day she will die. The innate right to choose your own time and method of death is a part of who we were as a family, one of the few things all three of us agreed on.

After Big Edie dies, there’s nothing to stop me from running away. I use “running” rather loosely. Financially speaking, I’ll live pretty comfortably once my mother has passed. Not lavishly, but when she leaves the planet, I can leave New York. Comfortable turns into slightly lavish outside the confines of the five boroughs.

I’d lived alone—and happy—for forty years. Then,in July 2018, my mother moved in. We knew there’d be an adjustment period, but figured any friction would come from 60 years of mother/daughter emotional baggage having to share a single bathroom. That was the easy stuff.

This is about being a caregiver when you never even planned on children. On said child being your 89-year-old mother. About two old ladies & five cats. This is some Grey Gardens 11372 caregiver shit.

what’s the sound of two edies talking? Big Edie: It wasn’t such a good day….

Ma, just find me and leave me a fucking message.

That age where your internal editor has quit, and truth just falls out of your mouth.

Early. It can be later than you think.

Big Edie, Bruce Springsteen, and Killer Joe.

Big Edie, milk chocolate, and white lies