Tag Archives: dementia

Life & Death & In-Between

Mom moved Dad to a care home today.  I haven’t talked to her yet, so I have no idea how it went.  It could have been bad.  It may have gone well.  Apparently she told him almost daily for the last week, but it didn’t register–at least, he didn’t really respond.

You see, my Dad has front-temporal dementia (FTM), which affects only the two frontal lobes frontal lobe and temporal lobe.  From what I understand, it’s kind of like Alzheimer’s Disease, except that people with FTM are aware of what’s happening to them, because the other lobes aren’t affected.  They know that they are losing their motor skills, have increasing difficulty with speech, that they are forgetting things.

Some people who have cared for spouses with similar diseases think Dad should have gone to a home a long time ago.  Maybe they’re right–Mom’s health in the last year has declined, but she really wanted to take care of him as long as she could.  Even now it has been a very difficult decision.  But she’s ready.

What a strange, horrible disease FTM is; to see someone you love wither away and almost become someone else entirely.  I always thought my Dad was so strong: strong of opinion, strong of mind, strong of speech, strong in confidence, and physically strong.  I don’t know that he was physically strong, but his rough and veiny hands always impressed me.  I wanted to have hands like his when I grew up.  I think I got them.  He was strong in so many ways, which sometimes made him difficult to get along with.  When he got angry, there was fire in his eyes, igniting fear in my heart.  But he was strong.  I think back to my childhood and see him use a nail gun to install window wells in our house; the sweat he worked up as he worked in his garden, shirt open and untucked; his voice carrying across a sanctuary as he preached (he was a passionate preacher and a shouter).  He would walk and bike with that purposeful, hunched-over Vandersluys gait.  When I was in college, I saw Dad, then in his 60s, wrestle a box-cutter-wielding student to the ground.  He was strong.

But weakness has overcome him now.  He has essentially lost use of one of his arms; his voice is frail and it is difficult for him to put a sentence together; he gets confused and paranoid and cannot be left alone.  He hasn’t been able to read for years, this man who would spend hours reading scripture and commentary and book.  His hearing is poor and he shuffles about the house slowly, unsure of himself or his surroundings.  A man who once had the answers now asks me for help.  The one-time bread-winner and “man of the house” now nearly helpless.  His strength comes back every now and then, but in those moments it is no longer admirable, but violent and dangerous.

Why does this happen?

The worst part is that I feel nothing.  Or at least I feel like I feel nothing, if that makes any sense.  I’m almost ashamed to admit it.  I could maybe force tears to come, but I’m not overcome with grief at his disease, his withering.  Maybe it’s the years of being away from home; maybe it’s the slow advance of the disease that eases the grief.  Maybe that is one redeeming thing in all this, if such a thing can be.  Mom has said that the entire disease is saying goodbye.  I think she said goodbye to her husband a long time ago.

It’s the best thing for both him and my Mom.  It’s safer and healthier for them both.  The idealist in me asks questions about sacrificial love and all that, but what does that mean in a situation where the sacrifice would be for nothing–laying down your own life without saving another?

And somehow, strangely, this will bring a new freedom to Mom’s life.  Give her new life.

It’ll be strange to visit Mom without Dad sitting in his chair.