Hello all my husband is 57 he has CBD. This year he has really deteriorated, even since December his mobility is really poor he leans forward and to the side. He has been presenting with confusion and dementia behaviours, he has become agitated and aggressive towards me at times. He will have espisodes where he wants to go out he doesn't know who i am or his home. I have looked after him alone to keep covid away. Sadly i have become overwhelmed and he has been placed in a home for respite. This is the same care home as my father who has vascular dementia. I feel I want him home but I know I will not be able to cope unless there is 24 hour care. Even then with his behaviours i am not convinced i will be able to cope. He is unsettled and distressed. I cant hold or touch him, i cry all the time. He has periods of lucidity where he knows he is ill and dying, he looks haunted in his face. My poor quiet, gentle partner, husband, best friend. I don't want him to suffer with this dreadful disease.
I am truly heartbroken, I don't know how I will cope with all this.
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Northstar1
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My heart goes out to you and your husband. Recognizing and admitting what we can or cannot do is so emotionally draining at times like these. I wish l could give you a hug & sit & hold your hand for awhile. Sending hugs... Granni B
I’m so sorry. That is indeed a heartbreaking and difficult situation, and at a young age. Please try to recuperate, take care of yourself, and reclaim some of your life outside caregiving. You have so much to deal with, even when your husband isn’t at home.
So sorry and your husband is so young I hope you can enjoy some time alone while he is in respite it’s heartbreaking when you see them with the older ones isn’t it ?My husband is now 73 he’s had it a long time but I do t think I can cope much longer in some ways I wish I had put him into care a lot earlier maybe things wouldn’t have been so bad it’s just been too long since the onset about 10 years ago
Take care my friend whatever you decide to do will be right trust yourself
My heart goes out to you, it really does but everything you are feeling is normal, the sense of everything being so overwhelming. But you know what you will cope, you will find away, try to find some time for yourself and do something you enjoy it really will help. I run so when my poor husband was going through his journey with PSP I used to run in the mornings before going up to the hospital and it enabled me to cope much better and also gave me something to talk about with him. Thinking of you and sending you a big hug Love Sarahxxx
I totally understand your situation.my hucband is my carer,diagnosed June 2017 age 60 cbd ,have now been changed to MSA ,same outcome.heart attack 2015 as if that wasn’t enough!you can only take things each day . Some days I can hardly walk,get to the loo etc.others I am just about mobile. He doesn’t want to do it,but I know that I will have to go in a home when things get worse .I’ve been on various research projects,no nearer finding the cause or a cure,so just have to muddle through each day.case for assisted dying?you wouldn’t put an animal through itxjane
Oh my dear Jane I am so sorry for you, your husband and family. Our lives are stolen with this horrendous disease. You are doing so well being able to post on here my husband could never do that. You have good insight too my husband made it clear he did not want to know. I agree a case for assisted dying I have thought this for a long time. A lady posted on here about her sister in America who chose that route..a difficult and brave decision. Love and strength to you Jane
Yes!they never cease to be a talking point when anyone comes. The case for ad will go on and on cos no one in the uk is prepared to put their neck on the line. Did wonder about moving to one of the countries that have made it legal then I can choose. Another downside of COVID,it hasput travel on hold could argue that it’s essential ✈️🥴😂😂lol janexx
Hi . I’m so sorry your husband has deteriorated so badly ... this must be so difficult for you . If you are struggling to cope then a home in my humble opinion is the best decision .. you will then be husband and wife again and please God he settles down and you enjoy the remainder of the time you have left together . I was diagnosed with CBD 5 years ago but I guess I’ve had it for around 8 years . I’m lucky I’m still able to do most things myself and still work full time . My left arm and hand are practically useless and my left foot is turning in and very painful ... speech is starting to be a problem . I get no support from my work colleagues at allnot my employers as they have never heard of the disease so therefore in their heads it couldn’t be serious .. there’s days I could scream with frustration . I find tiredness a real problem as I’ve always been a busy person and find it hard to accept this has happened to me . Anyway I’m rambling on . I looked after my mum who is 83 years old up until a year ago when she lost the power to walk and she suffers from dreadful anxiety which was unbearable as it involved her calling me up to 20 times a day . I eventually put in her a home which she hates me for . I feel no guilt at all as I know I did my best ... my point to you is don’t feel bad when my time comes I’ll be going into a home . I would never put my family through what I’ve been through with my mum. I have a good husband and two sons and 3 grandchildren . None of us knows how this will end for me .. I have CBD and I’m only 58 it sucks ! your husband has it but you don’t and my family don’t . So live your life .. visit him as often as you can but please enjoy your life . It’s all a pile of crap and we all die anyway so please please start living again ❤️
Hello thankyou for your reply. I think you are doing brilliantly still working too. I agree that there comes a point where you can't cope and in your heart you know it. That's what happened with me both physically and emotionally I had come to the end. The two weeks respite ends on Wednesday so I have a big decision to make. Love and strength to you. Xx
I am in the same situation. Dad had a fall on New Year’s Day and could not breath so took him to hospital and had 2 week stay. Now he’s in respite for 6 weeks. Just got off the phone to him and it really sounded like he wanted to come home. His speech was really off but sounded like a cry for help. It’s so painful to be in this situation, you want him home but not sure how to provide the care 24/7. Life is really quiet without him at home.
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