I feel like Lincoln "died" so long ago that I can barely remember him in the last few years.. No events that he went to, just a generalized memory of him riding in the car with me and reading off the signs, or having trouble getting into the house after the ride. One event: our Ukrainian friends' daughter got married three years ago last November. I remember that he went in his wheelchair and that son Charles, with great distaste, had to help him in the bathroom and that he made a mess. And then of him sitting by the hour at the kitchen table, or later in his bed, blankly.
So what I miss now is my boy. My sweet, smiling little boy who as Andrew said, gave good hugs. Who couldn't read or write or hold his poop in, but who loved his sherry and his ice cream and his orange that he ate throughout the day. And who ate sushi with chopsticks just before he went in the nursing home.
And I miss the sortof limbo I was in, excusing not doing anything about stuff because I'd get to it "after." Now I have to DO things, no excuses!!
But I don't miss.. the Depends the waking up in the night to check him the running into and out of the store quick because I'd left him alone the constant laundry Andrew's jumpy but necessary presence daily Regis and Kelly and Word Girl the worry about what WAS going to happen.
It HAS happened and it could have been a lot worse. I doubt that I would have had the stomach for the long goodbye Mary is going through. I KNOW I wouldn't have. That one day was enough for me!
I don't know about anyone else but I wonder what is going to happen and how and I think you missing him is normal and I also think your not missing certain things is normal too. I don't think that any of us can determine how long it is going to take but I don't think that we are given anymore than we can handle. Sometimes, I don't think I can handle any of what I have been given but I have no choice, I just have too.
We can only take one day at a time or we will go insane. Some of our spouses may end up leaving us quickly and others may linger for interminable length of time.
Oh Clare....know exactly what you mean by "my boy". All the transitions over the years, from the distinguished man of the house, intelligent and productive member of society, best friend, lover, confidant, husband, father, grandfather, to that of a sweet, loving "toddler man". Who do you say goodbye to when the end finally comes? I will miss my boy when it happens, the one now who searches for my hand in the dark of the night. Peace my friend.
I hate what your missing; but, the good thing about this disease for caregivers is that no matter how bad it is for us or how unbearable it may seem - today will look easier in the rearview. I can hardly breath because depression is standing with both feet on my chest. I've been avoiding my DW all day as best I can. She takes pillow cases off the beds, cushions from the couch, clothes out of the closets, books, magazines, and puts them all over the house. She turns on every tap she can and leaves them running. She eats soap and leaves from house plants. She spills things. Empties the cat's water bowl constantly. All the while shuffling like an iguana on it's hind legs mumbling incantations to her unseen audience.
But she has regained her ability to form sentences and calls me Wolf in the old tones. She admits she can't work the spoon with the soup and says "I want to". She asks again how I'm doing and even rubs my shoulders a bit again - all since I took her off all medications some 45 days ago. Before that she couldn't finish a single sentence for almost two years.
I'm an extremely strong willed person although I hate domination of any sort. I am clinging at times and can feel the mental exhaustion acutely. I said to myself today I can't go on like this. And then I read your post just now.
I've forgotten how she used to talk. The lilt in her voice and that personality tied up in everything she did which I loved so much and is so very much not here. I pulled a picture out of a photo album that has that look and I could almost hear her real voice.
My dilemma is that I know I will be worse off when she's in a home even though parts of me know that the truth I don't want to admit is that I will also be relieved.
I hope it will not be offensive but instead illustrate what this does to us when I admit that when I read your post I envied you that you had borne up and seen your husband through this disease - and that it is finally over and he is at peace.
This is one tough road.
I hope that you and all who have seen this through find some good things in life again. It's almost a selfish thing to say - because I hope that for me too. Rough seas ahead first and no mistake.
Wolf--I am seeing many of the same eccentric behaviors you described in my husband (rearranging furniture, rolling rugs, moving toss pillows, pacing, muttering), as well as the positives like showing affection. However, I note that when I take him out or he is at his adult day program, the annoying things don't occur. I have to conclude that he needs distraction and being out of the house gives him that. We would all go batty being home 24/7. Have you checked out an adult day program for your wife? It would give you some desperately needed respite and is a good way to help maintain your sanity as an alternative to placement.
Briegull, i can surely relate to the last personality too that comes in late stage. the pain of seeing them move from productive intelligent individuals to toddler/infant like in their ways happens over the years of caregiving. and we become increasingly more vigilant to their needs and disabilities. we adjust to their childlike ways and its a terrible loss probably as much or more than if we lost them as an adult. almost like losing a spouse and a child at the same time. hugs, divvi
That was a wonderful post. I confess I often question can I handle this in the future and sometimes think about "after". So very sorry for your loss of your husband.
((Clare)) you have been in my thoughts so often...... I too can relate to your feelings. I think the one difference in me is that I do still love Lynn as a husband. I know that is so hard for many to understand. My memories of who we use to be have been coming back strong in the last few years. I can now look at him and see who he use to be as well as who he has become. I love both, the husband, and the child. Divvi, as always, I feel we are kindred spirits.
ahhhh Wolf, the grass is no greener on this side. It is a horric disease at every stage and I wonder if there will ever be peace in my heart again.
Dear clare, have not been here in awhile and was surprised to read of all these losses. i relate so much to your post which surprises me. i am on a road trip now with my "boy" and have been thinking my feelings are similar to Tom Cruise's evolution of feelings toward the Dustin Hoffman character in Rainman. remembering you from the early days of Joan's and have been reflecting a lot on all our journeys since 2007.
I am also starting the transformation to "after". However, I still mute the TV commercials and shut the utility room door when the dryer is on (no loud noises please), and have the fastest shower possible because one never knows what damage can be done in a moment when out of the room. I finally took a REALLY long shower yesterday! I still find it difficult to remember what Garv was like before this insidious disease took him. He was so very violent towards the end, I couldn't get close to him as I was the target. For the last couple of days, our son was the only one who could "reason" with him and quiet him long enough for meds to be given. Unfortunately, I can still feel his hands grabbing me during his frustrating episodes. I know this will all fade, and the messages and letters from old friends are reminding me of wonderful times in the past. He was truly loved, and I'm just thankful none of them have bad memories to deal with. Our childen took his violence fairly well in stride the last days, and were incredibly supportive of me...basically just taking over as I was fairly well wiped out. Now...I am waiting for the good memories to return.