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.

6 thoughts on “Life & Death & In-Between

  1. Beck

    This is what it was like for me with my grampa. When things finally got to a certain point it was almost a relief… We’d been saying goodbye for so long, it was like I’d been grieving for years with him sitting shriveled in a chair in front of me.

    He had hands like that too. So strong and capable.

    I always thought his passing would be so hard, but really it was a relief because the person we’d been left didn’t seem like him anymore.

    So sad.

  2. Maryanne

    Well, your writing brought tears to my eyes, Marc.

    Every form of dementia is completely horrible, and so very strange. In ways it’s like losing someone you love very slowly (or actually quite suddenly, but they’re still physically there), and at least for myself (when we went through this with my Grandpa) it makes all emotions really complicated and never what you’d expect.

  3. Toni

    Old age is very cruel, and although modern medicine is so wonderful in some ways, at the same time it keeps us alive far longer than we should live.

    But you’re correct, I think, that the slow progress and distance is what has drawn the feeling from you. Grief is strange like that sometimes, and with my own father, we had nearly lost him 3 years before he did die, and I think we had already done a lot of our grieving in advance. Certainly for me, although I felt it, I was much more detached than expected, and that made me wonder if I should feel guilty because I was not more upset.

    But I think there is also some of that strength in you, and that strength does not easliy weep in these situations.

  4. Linea

    I wonder if the writing of this part of his story is your way of grieving for now. It is good to have a forum in which to speak this way. Tears are not the only legitimate way to grieve.

    There will be more grieving to come in this long drawn out process for your family. Old age is a rough final part of a person’s life path and watching a parent slowly make his way home through it is hard. I pray that the rest of his way won’t be too rough – or too long.

  5. Phil L

    My dad had a form of dementia that affected his memory but thankfully not his personality. Pneumonia got him before he descended too far into the fog.

    Will pray for you, your mom, and all who care for your dad.

  6. Pingback: VanderMeander » Blog Archive » The Vandersluyses

Comments are closed.