At the rehab center, I am shocked by the stranger in my father’s room.
It is my father.
My dad’s dementia has progressed so rapidly, so markedly that he is now a stranger to my family. He still knows who we are, but it’s like his very essence – that spark that makes him who he really has been throughout his life – is gone.
Oh, he’s technically still my dad and my mom’s husband. But for several years now, my mom was alone before she was physically alone.
At least they still went ballroom dancing twice a week; they were always good at dancing together. Until his hip broke in December.
Now my mom must learn to dance alone.
“How do you make a meal for one?” she asks me.
She has never before lived alone. She lived with her parents until she married young. Now that he was recently transferred to a permanent place for dementia and Alzheimer’s patients, they are apart.
“You can freeze food in one-person portions,” I say.
She is lost and cries to me on the phone. I wish I could just fly to Florida whenever she needs me. But she’s so far away. So I become a vessel for her pain.
I don’t cry with her. I don’t know why because I do cry alone. Perhaps I feel I must not fall apart when she’s falling apart.
Oddly, even though I’ve never been in my mom’s situation, I sort of understand. I know what it’s like to have my husband transform into a stranger. I’ve experienced the death of a relationship – albeit under different circumstances – and intensely grieved this death. I also had to learn to be alone.
My dad’s been on medication for dementia and for his Parkinson’s disease, but neither medication gives a rat’s ass that it has done nothing for these conditions. Neither do the doctors. He’s just one more old, frail, demented Florida patient to them. They don’t return my calls even though my mom has given them written consent to talk with me.
My mom is easily confused by medical jargon (who wouldn’t be?) and she has difficulty understanding and communicating what medical personnel tell her. So I’m her proxy, making these phone calls. I don’t mind making them.
But this is what I do mind:
The hospital social worker who deliberately doesn’t return my calls. I call her at least three times during the time my mom is in the same hospital visiting my father a few days after his third hip surgery. I call my mom and tell her to go to this social worker’s office, which she does. The social worker is in her office, admitting to my mom that she received my calls but isn’t calling me back. And don’t get me started about the rehab social worker who won’t return my calls until I call her boss and make a stink over this stinky situation.
I could go on and on about the rude, crude way my parents have been treated by the medical and social work “professionals” during a most stressful period of my parents’ lives, but I won’t.
My dad has so many things wrong with him, the odds of his long-term survival, I think, are low.
While I sit next to him at the rehab center where he is recovering from his physical injury, he is so far away.
There he is, all hunched over in his wheelchair, staring down into space and unable or unwilling to lift his head when my grieving mom, says, “Beth is here to see you. You know Beth?”
“Yes, she’s my daughter,” says my dad blankly, with slurred speech.
“Hi dad,” I say, feigning calm.
Then in a few minutes, he starts talking gibberish to my mom, who tells him to lift up his head and look at me. After her constant cajoling, he looks up at her and forces a smile, which disappears as quickly as it came. Then his head drops down again, where it remains for the rest of our visit.
I am losing my father. My dad is already gone.
Gone. Gone. Gone.
And my dad’s condition is only going to get worse.
Until he’s gone.
And so, as I write this during yet another sleepless night, I still know that cancer is shitty. But I’ve come to realize that dementia is right up there on the list of top shitty diseases. Dementia steals people from us, as we helplessly watch them wither away mentally, spiritually, and physically.
And I can’t help but wonder whether I will share my father’s fate. I no longer worry only about cancer. I don’t want to become smothered by dementia, and I certainly don’t want to be a burden to my daughter.
At this point, in my sleep-deprived brain, the song “So far Away” by Carole King runs rampant:
“So far away
Doesn’t anybody stay in one place anymore
It would be so fine to see your face at my door
Doesn’t help to know you’re just time away
Long ago I reached for you and there you stood
Holding you again could only do me good
Oh, how I wish I could
But you’re so far away…”
Have you known/Do you know someone with some sort of dementia?
Have you ever lost someone to this condition?
Do you have any advice on how my family and I could best cope through this?
Tags: dementia, dementia and loneliness, dementia and marriage, dementia progression, father and dementia, Parkinson's disease