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I agree. Today a nurse kindly asked me whether anyone was looking after me. Usually I would say something along the lines of 'I'm fine' but today I'm afraid it was 'No, no- one looks after me except my husband, and he's sitting with my mother to enable me to speak to you!' Not a good day....How do you do that when you are looking after someone else 24 hours a day! The people who say it do indeed mean well but it means nothing at all under our circumstances.
Linbrusco, I am sorry things are so difficult for you at the moment. You certainly have a lot on !! Might it be possible for you to access at least a bit of respite? It seems wrong that you are the only person not getting 'time off' at the moment xxi've been hearing this for the past 11 yrs since my husbnad was diagnosed with a brain tumour. He's been in remission for a good while, but as he no longer works and I work part time we are together a great deal.
Every few months we have a break from each other for a long weekend.
He catches the bus, and travels to see a friend 2 hrs away and stays with him and his wife.
A few months back he went to Australia to visit his sister and brother for 10 days, and I took 3 weeks long service leave. It was fabulous
But I am also caring for Mum now with AD and more increasingly Dad who has cognitive impairment. They live in their own house behind us.
My only respite is my 3 days at work. Even this is making Mum anxious, as she is at the stage where I seem to be the only one who can put her at ease. She has to have my days at work, marked off on her calendar, and then the days I'm at home.
On 1 of my days off Mum goes to an Alzheimers group for 2 hrs. The other day off I take her grocery shopping. Or either day off may be taken up with hospital or doctors appts.
Dad although with Mum 24/7, gets 4 days a week respite 2-4 hrs at a time from Mum.... I get nothing. My sister won't consider respite care, and the last time she took Mum & Dad for the weekend it was a disaster. Mum is at the stage where familiar surroundings especially at night are best. She also fell getting into the bath.
I find this infinitely harder than caring for my husband.
The " take care of yourself" is a slap in the face at this point in time.
Funnily enough, Kerry, I have just got off the phone from my elder daughter who lives in London. She worries about her nan, but even more so, about me. She has just sobbed for about half an hour about the unfairness of it all, how she wants to help but can't, etc.I can see like collegegirl from another side, my mum does all she can for my dad , forgetting herself, when asked if she is ok...yes fine , even when I know she isn't , push her and she is in tears not coping .
I know you are all fabulous carers and it takes so much of your time. but please if you can say no ..I'm not ok to someone , anyone , talk to someone ..please do , don't tell us you are fine , we can only push you so far, we don't want to force you any which way, talk to us ...
Opinion of a daughter xx