What’s worse?

David J

I don’t journal and I don’t blog. Opportunities are limited to express what’s in my head. What I write here doesn’t really need a response, because I know you are here, you understand, and you care.

DW and the dog are still asleep, although the dog has been up twice to relieve herself and eat breakfast. I’ve been up since before dawn thanks to the dog. It’s been a quiet morning, reading, having breakfast, paying bills and watching the news by myself. It’s lonely. But I know when DW awakes, the race will begin again. Get her to wash, dress, and take meds. Help her tie her shoes, retire her shoes, and change her shoes. Try to answer unintelligible questions and keep her from taking and hiding things, calm her fear, and on and on non-stop until 10:00 tonight. I don’t know which is worse, being alone or being the constant caregiver. 

I am worried about how long I can keep this up. My mornings are wasted and the rest of the day is spent with DW. There is so much work to be done around here but I can’t get to it. My frustration level rises despite my knowing it accomplishes nothing. My ability to keep a good humor all day just doesn’t exist anymore. I love my DW, even in her current state, but she isn’t the woman I married 4+ decades ago. She has become....what? My child, my ward, my responsibility?  Certainly no longer my partner and other half.

Her psychiatrist tells me I should consider placement. My family and friends tell me they don’t know how I do it. I have looked into MCFs, adult day care (now closed), increasing in-home care, live-in care, respite care, and there are issues with all of them. Comes back to the question; What’s worse?

MCI lead to DW’s retirement 14 years ago. Hard to believe it’s been so long. Increasing care needs lead to my retirement 4 years ago to provide 24/7 care. It’s been a long road so far, but how much farther do we have to go? What’s worse; rapid decline and death, or many years of institutional care?

My decision making seems to have changed from “what’s best?” to “what’s worse?”.  

Crushed

DW was already "below average " for MC when she went in.   She was psychotic and wandering. MC was a safe place. In less than a year she a lost all understanding  of me as anything special.  She is my total responsibility, but no longer my marital partner.  I grieve for the loss, every day.  But I accept the loss.    I am just not one to pretend that the shell is DW.  It is a person, deserving of protection and care but not HER.

60 falcon

I don't have any advice David, but I often have the same thoughts. I'm on the side of hoping for rapid decline and death. Then I feel horrible and guilty for even thinking something like that.

M1

I get it too David, my day was like that yesterday and I end up thinking, how much of this can I take? Constant interruptions, constant shadowing, constant nonsensical conversations that just leave me gritting my teeth and wishing for an escape. I too sometimes wish for her that some other event would intervene so that neither of us has to endure such a grinding decline. I don't feel guilty about that; we will just take what comes.  She's interrupted me three times as I'm writing this.

banpaeng

Mr David, you are not alone.  I have always said I would keep my wife at home.  Lat week I told my son, if I don't get some help soon, one of us needs to go.  Me or my wife.  Told my shrink last week the same thing..

Hope all works out for you.

Jeff86

Thank you for a very thoughtful and honest post, David.  

We here appreciate the frustrations and challenges of day-to-day life with a PWD.  The dull repetitiveness of things caregivers have to handle daily, or multiple times each day, could wear out a saint.  Every morning when I get up I am torn between hoping DW will be, and stay, asleep—giving me quiet time to get stuff done—and concerned that if she sleeps too long she’ll likely leak through her adult diaper and another round of laundry will need to be done.

Multiple times today I had to respond to DW saying that she was afraid, reassuring her that she is safe, distracting her, and so on.  This afternoon, on our family Zoom meeting with the kids, she turned to me and asked where her (long-deceased) mother is.  One mo’ time.....

The question arose on Friday in my caregiver support group as to whether we feel our LO is still our spouse.  Pretty universally, the answer was no.  A lot of loving care was expressed, but it’s for a shell of a person who is more like a child, a dependent, a ward, a charge.  Great responsibility but not really a marriage any longer.

I, too, think about whether a rapid progression and death is a less bad alternative than multiple more years of more gradual decline.  Granted, a hideous choice.

You’re right that every caregiving option or ‘solution’ brings with it significant negatives.  There are no good answers, only perhaps ‘less worse’ ones.

All that said, what we do know is that the ship is going down.  We have to make every effort not to go down with it.

Iris L.

The above sentiments are why I won't look to my brother, my closest relative, to care for me, if and when I need total care.  I will find the best facility, as Mimi S did.  He can come visit me once a week or so.  

Iris

Mint

I feel the same Iris.