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Carers UK Forum • Carer progression
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Carer progression

Posted: Mon Jan 21, 2013 11:21 am
by tony
Well what a career it has been.
Boyfriend to husband to husband / carer to carer / husband and now carer, on Tuesday I move out of what was our bedroom so that a we can put a hostpital bed into it, it does not look as if we can get a second single bed in as well as allowing the wheelchair manovering space and of course the hoist.
It's clearly needed and will hopefully have a positive impact on OH wellbeing but both of us are devasted by it. Quite reasonably everyone is expressing concern for her and I can not show the affect it is having on me as this will only upset her even more.

It seems likley we are in the final stages of her illness so no possibility of the situation changing for the better.

Just want to be able to say it "outloud".

Re: Career progression

Posted: Mon Jan 21, 2013 12:04 pm
by poppett
One of my saddest memories was when mum took to bed to wait for God. The social services insisted on Dad moving into a separate room and a single bed for mum. We eventually compromised with two single beds in the huge bedroom. They tried saying it was because mum had dementia Dad could be sexually abusing her. They were both over 80 and his tablets had made him impotent many years before, but they just wouldn`t listen.

Every day when the homecarers called the beds were at opposite ends of the room, and at night I pushed them together, caused me more back pain than moving mum on a double bed would have done.

I am sure you will both sneak some private time together once you get settled into a new routine.

If you had your life to live over again and nothing could be changed would you still go down the same path.....of course you would, as nobody knows where the meandering path ends and the rocky road begins.xx

Re: Career progression

Posted: Mon Jan 21, 2013 12:59 pm
by The Green Archer
Hi Tony, Have a ((((HUG)))) from me, Poppetts right when thing change around its difficult but give it a little time and you sort something out, it will all of a sudden click of something you can do, but take care.

Re: Career progression

Posted: Mon Jan 21, 2013 3:11 pm
by Booksey
Tony I understand how you feel we were devestated when hubs had to move into a hospital style bed with air mattress etc.

I used to sneak in for a cuddle (even though the air mattress used to make me feel a bit sick). I slept on a sofa bed in the same room because I needed to be near incase there was a problem in the night and because I wanted to be as close as possible.

The feelings of the partner/carer are often overlooked by 'The professionals' in these cases. One of the DN's told me that in the past double hospital style beds were provided but due to cuts that was no longer the case Image

Re: Career progression

Posted: Mon Jan 21, 2013 6:34 pm
by Lazydaisy
Tony, thinking of you.My Mum and Dad both found it very hard when Dad could not give Mum a hug anymore as her pain was so much.
Everyone remembers to feel sad for the person who is ill,but they forget the Carer,the "other half" who still has loves with everything that was there to start with,not even able to lie in bed and hold hands and each be reassured by the other.

Re: Career progression

Posted: Tue Jan 22, 2013 3:47 pm
by Eun
Its not only partners who miss the lack of affection. I have not received a hug from my son since he was 9 years old. I can hug him but he cannot physically return the hug. It was hard to watch other children doing things like riding a bike or kicking a football - all the 'normal' kid things when your child is losing another little bit of his independence every day. Its hard to see all his able bodied friends leave home and live independently and get married etc when he can't because there is no support out there for him. And then you listen to some old people moaning about nothing and you think to yourself for God's sake you have lived all those years and my son has not had nor will have a 10th of your years and he doesn't moan about cr*p. Why should they get to 90 or 100 years or whatever and my son's friends have died at 17,18 or 21 years of age - how the hell is that fair? I don't want to offend anyone - these are just the sorts of things that goes through ones head in the darkness of the night when you can't sleep. The other thing that was really hard when he was diagnosed at the age of 6 was trying to pretend that everything was normal for his sake (although apparently he said to his school teacher at the time that he didn't know why mummy and daddy and his grandparents were crying a lot so we weren't that good at hiding it) when your life hadn't been totally destroyed at the thought of losing your beautiful only son. Phew where did that lot come from - I thought I'd buried all these feelings and put a lid on them years ago!

Eun

Re: Career progression

Posted: Tue Jan 22, 2013 4:05 pm
by tony
Eun I wouldn't like to say which is worse and can only sympathise with you, as a fellow carer and parent.

Re: Career progression

Posted: Tue Jan 22, 2013 4:55 pm
by NanaNana
Hubby was given a double rise and fall bed to aid his PA's getting him in and out. If he had a normal single bed, his leg spasms would pull him over the side. So, even before I came on the scene, he was designated a double bed by the NHS/ss.
It's a shame that they couldn't do that for you. You ARE a married couple after all. Has nobody thought of that? Why should you move out of your own bedroom, your own bed?

I am very upset by this. What better time is there for you to be together?

Hugs loads to you.

Re: Carer progression

Posted: Wed Jan 23, 2013 12:55 pm
by tony
Thanks NanaNana, it's happened now, we spent our first night apart for several years last night, niether of us got much sleep but hoping things will get better soon. Thanks everyone for your kind words.