Deb, that is exactly what happened to me. A while before Ron died it finally occurred to me he was dying.. our time was probably short..
he was terribly sick and couldn't help it. I was so filled with love and compassion it changed me.
That is not to say I still didn't have some really rough days, but I just felt differently about it all.
Bless you... give Rollie a hug.

I still go back and forth, but am beginning to feel more compassion. I am trying to remember that Ken still has intelligence, and that it is this terrible illness that is destroying his memory and changing who he is. I too, feel that our life together is getting shorter, (whatever shorter means).

Last week, at our doctor visit, the doctor reminded me that Ken has a disease that only has one outcome and that outcome is death. There will be no reversal for him. It is just too late.

The difficult part is knowing that that is going to be the result, preparing yourself for the outcome, living each day with the confusion that the disease causes and becoming a prisoner of it yourself. It can and usually does go on just far too long for a caregiver to remain steadfast.

Talk about not being steadfast! LOL

We went on a little outing and we ended up in the car for 2 hours together. He got on one of his repetitions about "have I done something wrong?" over and over. I thought I was going to go nuts BUT I kept it together, remembering my 'compassion'. When we got home I was trying to get us and the groceries in the house in a hurry because it was raining. I kept telling him, "please step away, I'm closing the door." and even tried bumping him with my leg because my hands were full and I was trying to close the door with my other foot! I'm sure we've all tried that multi task dance before.

Of course at the last moment he stuck his fingers in the door! OMG! He yelled at me and then I yelled at him, 'I TOLD YOU TO GET OUT OF THE WAY!" and all the while I was thinking, "well so much for patience and compassion."

Deborah,perhaps you could re title this post to "wavering in my funk".I like it.It sounds like a rock song.

I'm also trying my best to be compassionate but I'm afraid I'm not always there. My husband came home Friday from a week in hospital with an indwelling catheter. It'ssuch a pain, more for me than him as he doesn't seem to even be aware it's there.
Last night in trying to change the urine bag from the leg to the night bag I spillt urine everywhere, his feet, the floor- you get the picture.
I was upset with myself and yelling and then had to re-assure hubby that this was not his fault.
Now he is runnining a mild fever again and I just hope we don't end up back in hospital.
This disease is cruel enough without constant complications with pysical health.

I can relate to all of you or some of you on any given day. I wake up each morning and thank God for the new day and ask for help to be a good caregiver to my husband. I start out each day with great intentions of being compassionate and understanding.........and then the day begins.
He can say or do just one thing that changes everything in a heartbeat.
Doesn't trust me and is accusatory all the time with a little combativness in there too. I don't think he appreciates what I do for him...he thinks this is my job that I "am well compensated for". Isn't that a laugh. NO ONE is well compensated for this job! anyway, I understand it all and hope I can continue to take care of him to the end. I try everyday and can't do more than try.

I have much compassion for Jim. I look at him and remember the wonderful husband and father he was to our two sons and me. When he hurts, I hurt.

I know he will die much sooner than I would like, but while he is still alive, he will get the best care that I know how to give.

I think that is why our two sons are such giving, loving people with their dad because they remember how he went to Little League, took them roller skating (and skating with them), talking me into giving them motorcycles when I didn't want to do it, etc. Now they are here four evenings a week to help me get him ready for bed (changing him, changing his wound vac twice a week, positioning him in bed with all his pillows, etc). I couldn't do it without them.

At the moment, I am feeding him breakfast (oatmeal with bananas) and so far, it has taken 30 minutes and we aren't half finished. But he will eventually eat all of his breakfast.

Most people (friends) don't understand why I take care of him instead of putting him in a nursing home, but guess they don't have the love and devotion that we have shared for all these years.

Take care and hang in there.
Love you
Mary

Mary, I understand how you feel. We have been married for 64 yrs, and my husband has always been there for me, and the kids. He is still trying to help me, and is very considerate. However, he is very sensitive to any remarks about doing something wrong. Like leaving the water on, I might say, "you forgot to turn the water off". Then I feel so bad and try not to say things like that, because then he gets upset. I try to make his days happy as possible. I also pray every morning for help me do this. It can become very difficult.
Do any of you find that they are especially sensitive or is it just Roy?

Yes, my husband is extremely sensitive to what I say, even just a hint that I might be upset will set him off. That's what started our day off wrong, he had to go to the bathroom and 5 minutes later he said he had to go again. All I said was, "are you kidding? you have to go again?" and that was enough to start the "have I done something wrong" repetition. Everything has to be rosy for him, we can't show any kind of sadness, anger, etc around him.

Deborah I know it's hard but at least your husband seems to care that he has upset you. My father would be angry at my mother in that situation and make her life miserable the rest of the day. My wish for her is that as he progresses he losses his nastyness.

i know that things could be much worse and I am thankful that my husband isn't mean and nasty. I really appreciate that he still loves me, I know that he does even if he doesn't really know who I am.