Slipping away with little quality of life - different feedback from care home

[Brother47]

It's definitely cruel to prolong the situation in my opinion. It's also difficult to get a realistic opinion of situation from the staff. I think it's true that we are given a positive upbeat synopsis from the staff but personally I would like a reality update. We were told mum was sitting in a chair in a lounge with all the other residents on Sunday as it was mother's day, however, mum is bed bound and can't even lift her head up so we can't believe they managed to get her into a wheelchair using a hoist and then moved onto a chair in the lounge, it's totally unrealistic. Hey ho, hopefully this nightmare will end soon ...

HI Sheelagh7... I feel for you and yes, me too, I hope the nightmare will soon be over for my brother and for your mum. It's so horrible to see. My thoughts are with you.

 

[Brother47]

My father in law is 92 and in a specialist hospital dementia unit - he's been there over five months after being diagnosed with Alzheimers and has deteriorated rapidly during that time. Like you we get very mixed messages from the staff alternating between he's fine and settled to he's violent and aggressive. I don't necessarily think they are holding back but it depends on who you speak to and how busy they are- that's what I find anyway. I always tie myself in knots over thinking have I asked the right questions so now as thoughts pop into my head I write them down to ask the staff next time I'm speaking to them on the phone. With covid restrictions we aren't allowed to visit except once a week so I understand your frustrations. Alzheimers is such a horrible disease and the person can have moments when they are OK but they are few and far between as the disease progresses. My own opinion is that it is the feeling of being powerless and that you 'should or could do more' are overwhelming at times but I have learned that's OK. You can't do any more that you have been and unfortunately we all have to come to a level of acceptance that it's out of our control and certainly not what we wish for our loved ones. Your brother is still there albeit locked in his own world, it's very sad for you but try to focus on the good memories you shared in the past. Take care of yourself and try to live your life well in memory of you brother - I am sure that would be what he would wish for you. I send my kindest regards for being on this emotional roller coaster which seems unending - it's not in anyone's control unfortunately and it's totally natural to feel the way you do. Big hugs to you!

Thank you so much for your kind words Unicorn 1, yes I feel totally out of control now but look back and know that my brother got his wish insofar as being able to stay independent as long as he did. He was so stubborn and should have gone into a care home a good 6 months before he did. During his last months at home he was falling down sometimes during the night and the carers would find him asleep on the bathroom floor. He put up one heck of a fight not to go into care but by the time I was able to persuade him, he was starting to 'fade' in terms of not quite knowing where he was or what day it was and not recognising everyday items such as kettle etc. I felt awful because I lived some 2.5 hours drive away so when I was able to get him into care home, it was a huge relief for me to know he had proper full time care. I was surprised to see him decline so fast. Yes, he is totally locked away in some strange world. He looks so 'down' and vague. It is a nasty roller coaster. Thank you for what you've said and for the big hugs.