A couple we know as friends have had a problem, to say the least. He has had a massive stroke. He's now out of hospital and at home. She has a terrible time coming to terms with his disability - not yet recovered proper speech, but it is possible, with time and patience to understand his slurring. He's v frail and wobbly on his feet, using a frame. He can use the computer, one handed, to keep in touch by email. He mostly copes with eating and drinking, but it's a bit messy without full control of both arms and hands. They have started to have a carer in the morning and evening to help with toileting and showering. It is, in my view, unlikely that he will recover, but he might not get any worse and he's with it mentally, can write (after a fashion) notes and questions. He can see. He can hear. He can follow programmes on the tv and radio.
She is desperate to have a break and go away away, and I have suggested respite care for him to help her.
Whilst he can no longer manage to come to bridge, she comes most times.
Now compare and contrast my situation as full time carer for the last 7 years for my OH, firstly with multiple myeloma bone cancer (now fortunately in remission) and now Alz's (and probably mixed). With gradual deterioration, my wife can no longer speak properly, she cannot cope with cutlery and I have to feed her food and drink, she can no longer weight bear and cannot get up to go to the toilet or bathroom/shower (and thus is as good as (if that's the right phrase) incontinent). I have a sitter for one three hour session per week, and son no.2 comes one evening a week so that I can go and play bridge. I keep up my 1 hour per week zoom meeting with friends for a chat (they all do it just for me); and I have a list of family and other friends I try to keep up with by occasional phone calls. Yes, it's very restrictive, yes it's difficult not going out when you want to, yes it's difficult not being able to join in friends' trips into town, or to the theatre, or to anywhere ever!
Friend, with husband whose had stroke, says to me "How do you manage? How do you cope mentally in being trapped in the house, no holidays, etc., etc.," I often wonder this myself, but it's in the mind and I have no real choice other than to get on with it for my OH in her darkest hours when she needs me most. Sure there are times when I'm down, when I wonder what's the point of going on, would it be kinder to put her into a care home, or to put a pillow over her head. How long is this torture going to go on for? etc., etc.. But generally, my natural optimism prevails, and I feel I'm privileged to be trusted with her care, because I care.
As the thread is headed "don't forget to find time for yourself"
Thanks for reading my rant, if you still are!
I'm not always sure if I'm the sane one here.
I'll go and read in bed for a few mins/pages, before going to sleep, so that I can get up and do it all over again! What a life - that's both of us!
Cheers. Smiling and laughing about it is better than the alternative.