Up at 12:20 with Larry bell ringing. Going in found him on his side with a pile of diarrhea under him. Got him up and into the bathroom on the toilet. He had a bit more. While he was on the toilet striped the bed and remade it. Washed the sheet out in the toilet on the third floor. Came down and cleaned him up. Put him back to bed with adult an diaper on. Took the other half of the diazepam I took at bed time. Lying there for 10 minutes he rings the bell again. Went in thinking there was more diarrhea coming. Walking into his room he asked me what I was doing. Told him trying to get back to sleep as it was 1 o’clock in the morning. Oh, his reply. Back to bed and sleep for me. At 3 the bell rang again. This time he wanted to go downstairs. Took him down. Put the TV on for him. Back to bed and sleep again. Up at 4:48. Am pleased I did get back to sleep being interrupted so many times. Doing my workout yesterday helped.
The new normal.: Up at 12:20 with Larry bell... - PSP Association
The new normal.
O Jeff - I feel for you. This is a very hard time for you, and I do admire your coping with it all on your own. So glad you were able to get even a little sleep - that's the most important thing, of course. Just know, for better or worse, every new normal is only temporary. I didn't know it at the time, of course. I was just treading water as best I could for us both and hoping we wouldn't both go under. But I wish I were still doing it. Even if I couldn't change my rotten temper and had to pull myself apart again (slowly recovering range of motion 18 months later) I wish I had him here still.
He’s so lucky I can do this. I had people say if it were you he would do it for you. I laugh and say no way. He might want to but this would have been too overwhelming for him a few years ago.
If he should die before me I will miss him terribly. I’ve been through major loses in the past. They hurt. This one could kill.
He’s still in remarkably good shape for being 7 or more years into this but incontinence is one of the later stage symptoms. I know it is coming. When is the question. Could be a few more years or not.
Brings back memories of that time. Like eastern cider I also wish I was still doing it all but I wouldn't really want him back as he was at the end. There was no quality of life. If he can still talk make the most of it.
I also count myself lucky to have had the strength to care for him at home.
You are doing so well. He is lucky to have you.
Love Jean xx
hi, Jean. How are you doing, my dear?
It's tough isn't it? ?
Chris birthday is coming up so its hard.
How are you ?
Xxc
Really busy right now, which helps. My mother has moved in with me, made possible by all the assistive equipment already in place. I'm glad to have her company, glad to help. She's great.
But but but....all the constraints are back, and I'm tethered pretty close to home again. Not much time between work and being with my mother. Still, I'm generally content. So far so good. Except she generally whomps me at cards.
I don't think there is a perfect solution. Mostly I'm happy on my own, if I can't have Chris but occasionally I would like company in the evening.
I'm needing some purpose to my life. It will come.
X
Yes, Jeff, as you say, when is the question. It's so hard to husband your strength when you don't know how far you have to go, and all the while things just keep getting physically and emotionally harder to manage, as your partner's weakness and incontinence increase and abilities to communicate and participate in your shared experience vanish. It's awful, but I am glad I was able to do it. I'm grateful I had the opportunity to care for my wonderful man. I don't know if he would have/could have done it for me. I'm on my own now!
Oh Yes your words resonate. Even my frustration and anger and everything in between. I’d do it all over again. I wish he was here too. Bless you for reminding me.
Cuttercat
Exercise and diazepam makes this all possible.
I believe in exercise with music... it helps us Stay Strong for our challenges... also eating our veggies Ugh now l sound like my mother. Ice cream & cookies are my favorite nutritional supplemente. Whatever yours is... have a large serving of it today...
I like to eat well and we do. I make all kinds of things. Recently I found this cake site with some really good cakes .
Oh YUMMY ... Just checked it out...thanks for sharing Jeff... l signed up for their newsletter.
Jeff you keep doing those workouts! My brother used to do that too, his wife had MS. Think he needs to go back to the gym!!
I could probably do with going myself but have no motivation!
You are great! Take care of yourself.
Marie x
I’m an endorphin junkie. If I don’t get my fix it gets ugly. When my irritability levels are up I know what I have to do whether I want to or not.
Well at least you know how to look after yourself? That also helps with the caring role? It is so difficult I know. However it won't last forever. Then you eventually have to face that new normal? Wish I could say it's easier but I would be lying.
Take care of yourself.
Marie x
so so sorry................and I wish I could say that Larry will improve, but we both know...........
So, I keep you in my daily prayers.
Blessings, Margarita
Thanks. I know from this site how things go which is a huge help.
Poor you. My sister used to keep getting out of bed and lying on the floor. She didn't know why she kept doing it
The off the wall ideas are always a challenge. How do I dissuade him without upsetting him. So far so good.
Jeff, stay strong, keep trying to get sleep and exercise. My biggest fear is that as my husband gets older and less mobile, well so do I. Will I still be able to take proper care of him.
Thank you for all of your input. Your posts keep me going....
My joints aren’t real happy about what is being asked of them daily.
Amazing isn’t it, how we can and do adapt. You are doing it well. But I agree the lack of sleep was the worst (still is) but you are a resilient man. Proud of you.
Cuttercat
It’s adapt or die I suppose. Each new requirement gets a few seconds of adjustment before doing what is now needed to be done.
I have a great admiration for you. Take care of yourself too.
Elena
Doing my best. That’s all I can do.
Just when things looked ok!
the time has come - 3 years from diagnosis
My husband is coming out of hospital today and I am scared I will not cope.
Patience
This is a first
