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Carers UK Forum • Abandoned by officialdom
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Abandoned by officialdom

Posted: Fri Oct 23, 2009 8:45 pm
by D0r0thyG
Hubby is virtually quadriplegic and can do nothing for himself. He needs 24/7 care. He also has 3 grade four pressure ulcers which the district nurse dresses every other day. They need packing and covering. The days the district nurse doesn't come, the care workers (who come in four times daily) change the dressings.

It was suggested that he went into a nursing home to try to cure the pressure ulcers with regular turning. He had a very bad experience last year in a home trying to do the same thing. The stress of this home gave him an attack in which he nearly died.

The most recent home we looked at seemed plush and well organised. New furniture in the rooms, the decor brilliant. Lots of forms filled in telling them all about my husband. He was admitted on Tuesday. We got there and although they were expecting him, nobody knew anything about his condition. They were asking him to move certain parts of his body that he hasn't been able to move for years. Through the night, his "balloon" which he hit if he needed to call anyone fell and his hand couldn't reach it which meant he had to use his voice. He was calling out for nearly two hours. Nobody came.

The next morning they didn't brush his hair (it was matted as it is long) and instead of lowering him into the wheelchair in a sitting postion, he was laying in there nearly falling out. It was obvious they couldn't care for him properly so I brought him home. I didn't want another attack happening.

I telephoned the care agency asking to put his package of care back asap. They said they would try and do their best but probably couldn't get the whole package back until Monday. My sister came over to help me care for him until the package was back in place.

I had a phone call at 5.15 this evening from NHS continuing care to tell me the agency couldn't get the package ready until November 2nd!! I asked what I was supposed to do and was told they could try and get another agency in for the extra week. But we would then be in the same position as he was at the home as they don't know anything about him and would have to learn from scratch just for a week?? I was told nothing else could be done. I am livid because now I feel I have been abandoned by officialdom or being punished for taking him out of that home.

I have now got to try and care for him myself until November 2nd with help from my sister.

Oh Dorothy where is the

Posted: Fri Oct 23, 2009 10:43 pm
by entity
Oh Dorothy where is the compassion in our society?

I feel totally humbled by your plight and only wish the rest of society could imagine what it is like to be a carer and what we have to go through and the tremendous pressure and stress of our responsibilities. My thoughts are with you- although I know this is no consolation I still feel your pain anguish and disbelief of the palliative system.

Thinking of you in your time of need Image

Dorothy I am so sorry

Posted: Fri Oct 23, 2009 11:29 pm
by Eun

I am so sorry to hear what is happening with your husband. When the social work did this to us with my son, we went to our MP and our councillor and threatened the SW dept with the press.

They phoned us up on the Tuesday night and said that the service they provided would be with drawn as of that day. They said that he could just stay in bed. This was whilst both of us were in the middle of exams at University!

They forced agency workers on us without any choice and we still have to put up with the agency to this day but its better than nothing.


Dear God Jane, what a

Posted: Fri Oct 23, 2009 11:51 pm
by Pete the Paint
Dear God Jane, what a 'cock up'!! It makes me boiling mad. Fancy just leaving him on his own all that time! Stupid fools, anything could have happened to him.

Your sister is a godsend to you both, but the sooner the care package is back in place, the better for all concerned.

Big (((((hugs))))) to you, I think your AMAZING!

Pete xxx

Hi Dorothy I would contact

Posted: Sat Oct 24, 2009 10:49 pm
by kenm
Hi Dorothy

I would contact the SS emergency service--I don't know what area you live in but they should have a Rapid Response team they can send in to help you.
Tell them you can not possibly manage on your own and not only is your health at risk but also your husbands.

Can't say I'm surprised about the home--I have just won an out of court settlement against one for neglect.
I have not found one care home or hospital general ward that is capable of safely caring for anyone who can do nothing for themselves.


Hi Dorothy I am angry

Posted: Sun Oct 25, 2009 1:13 am
by diva
Hi Dorothy I am angry on your behalf at the way both you and your husband have been treated. In the past two different doctors wanted to withdraw one of my husbands meds on two seperate occasions Both times i said to them that if anything went wrong in the middle of the night the emergency GP would have to come out and deal with it. The reason being is that i expected them to take responsibility for their own actions They then backed down and changed their minds. It seems to me that a lot of the medical profession dont take their responsibilities or their duty of care seriously because they know there are carers (us) who will bear the brunt of it not them. And now you are left struggling until November 2nd cos more of them cant get their act together or because you took your husband out of a place where he was being mistreated. They obviously dont have the compassion required to be in that kind of job .
sending you kind thoughts and hugs Diva

There is nowhere within travelling

Posted: Sun Oct 25, 2009 7:56 am
by Myrtle
There is nowhere within travelling distance for my oh that can provide the level of care that he needs on a daily basis.
The ms respite centres are all too far away and way beyond our means to fund if they weren't.
((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))) Dorothy