Chapter 63. Dementia

I have a relative with Lewy body dementia.  

I thought I’d write about this because of the devastating impact this form of dementia, and others, has on the family.  And the patient suffering from it.

You’ve heard the jokes, “Oh, dementia by the time they have it, they’ve already forgotten about it.”

Not exactly true.

My relative remains mentally active. She keeps up with politics.  She remembers her family and friends.

She is not disappearing quietly into the woodwork. She is struggling and fighting this disease that gives her hallucinations and is robbing her daily of her lifeforce.  

She knows what is happening.  And that is the fundamental horror of the disease.  The knowing that it is happening and the not knowing about why.  

There is no “why” for Lewy body.  There are risk factors that include age and genetics.  Useless information isn’t it.  We age.  We have genetics.  Not much to do about that.  Oh, maybe someday genetic research will isolate that shit gene and make it disappear.  But for now, it’s uncurable.

My relative has children who love her.  They speak to her daily and visit multiple times a week.  They wisely led her to accept an assisted living facility.  She has not been abandoned. They do everything possible to make her comfortable, to help her with doctors, therapists, medications. 

All that makes her safer but not better.

There’s nothing that can make it better.  And that’s the sheer madness of it.  

We all fear dementia. I know I do.  Each time I forget a name, a word, a show I’ve binged, a book I’ve read, I’m fearful that my mind is losing bits and pieces. Is my brain being slowly consumed by those tangles and plaques? This morning, I was looking at my on-line book library.  Did I read all of these?  What were they about?  I picked up a few.  Whew, a quick reminder helped me remember the plotlines.   I do crosswords, connections, wordle, and worlde (that’s a geography exercise) every morning. I find that while I’m able to articulate my thoughts on paper, I’m less able verbally.  What is that about?  Is it the beginning of dementia or is the result of some TIA’s I had a few years back?

I have the luxury of worrying about this.  My relative does not. She lives in abject fear of what she’ll see, hear, or think.  She can’t control the demons that terrorize her day and night.   She knows that the best part of her life has passed.  She says, quite honestly, that she has no future worth living.  

My relative remains locked in this dungeon.  It will grow darker as the years go on.  It breaks the spirits of her children.  They’re the ones with the onus of care.  They’re the ones whose lives stand still while the Lewy bodies destroy the cells of their mother’s brain.

There comes a time, I believe, when life is not worth living.  I can’t decide for someone else, but only for myself.  I would want the choice to live or die.  No state law gives that choice to someone with dementia.  They allow for physician assisted suicide for people who have a terminal diagnosis (six months) and are competent to start the process of delivering the fatal dosage.  Other nations do provide for a dementia option but it’s controversial.  I get that.  Are we murdering people who are mildly cognitively impaired?  Or are we relieving the immense suffering of someone whose mind has caved in upon itself, whose body has shut down? 

My mother-in-law had Alzheimer’s.  I watched her move from an active, tennis-playing woman to a paranoid and angry patient in Memory Care.  God, I hate that term.  Ultimately, she was moved to a nursing home, unable to sleep on a bed and relegated to a mattress on the floor.  When we visited, did she know what was happening?  I don’t know.  She was nonverbal. She didn’t make eye-contact.  

Did she know what had happened to her?  It haunts me because I don’t know about my mother-in-law, but I do know that my relative is painfully aware of her circumstances. 

I guess someday perhaps she won’t.  But watching the pain to get to that grim reality is nearly unspeakable.