What do I do now?

sammyb

Registered User
Sep 19, 2007
126
0
Nottingham
As people will know my husband has been in hospital for 6 months with the exception of a 6 week period near the beginning when he came home. On and off he has been saying that he won't be coming home, they won't let him home, he doesn't want to come home and I'll be lucky if I get him home. Most of that I thought was down to apprehension - being scared even. But, there has been a weekly review meeting with him today with the doctor, social worker, occupational therapist, physio and ward staff present. I thought it was a normal weekly review meeting with the doctor but clearly not - and I wasn't invited. It will be my turn tomorrow when I will be seeing the doctor. At least I think that is the only person I will be seeing. I was just going on the ward at tea-time when I bumped into the social worker who advised me that the meeting I knew nothing about had just finished and that it hadn't been a good meeting. My husband had categorically said he didn't want to come home. He gave no reason. He had no idea where else he might like to go. The social worker asked me straight out if anything had been amiss before he was admitted into hopsital for his back. I felt she was asking if our marriage had been on the rocks - perhaps I was being super sensitive but there seemed to have been a change in her attitude towards me. As far as I was aware everything was OK in our marriage. I was asked to find out from him why he didn't want to come home so I asked him a little bit about the meeting. He told me in no uncertain terms and very nastily that he wouldn't be coming home but then said he would try it for a week if I insisted. I just don't recognise him or what he is saying or why. Plans are still in place for him to come home next week but, if I understood rightly, possibly for a week and there would be careful monitoring of him during that time to make sure he was OK being at home with me and if things weren't going well he would return to the ward. Alternatively, if he continues to say during this week that he doesn't want to come home then 'the patient's rights' will be brought into play whatever that might mean. On the one hand I am being told that he is too far gone to even consider a lasting power of attorney and yet they seem prepared to talk 'patient's rights' when it comes to where he lives. I have to keep reminding myself that 6 months ago, with nothing else apparently wrong with him, he was admitted into hospital with one broken vertebra. And we have ended up at this point and I don't know what to do.

love from Sammyb
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,356
0
Kent
Dear sammy,

You ask `What do I do now?`

I cannot tell you what to do, I can only tell you what I would do.

If the patients rights are so important, what about the rights of the carer. It is obvious, from what you`ve said, your husband would be unable to live independently, and I would take exception to the fact that a meeting was held to which I, as sole carer wasn`t invited.

It has also been obvious from your posts how much you were looking forwards to him coming home.

If your husband comes home for a trial period, the success or failure of this period doesn`t only depend on him, it depends on you too.

Whatever your husband has said about you, it is absolutely disgraceful for the social worker to allow it to affect her attitude towards you and I would be very cross indeed.

I would go armed with a few questions of my own tomorrow.

Love xx
 

christine_batch

Registered User
Jul 31, 2007
3,387
0
Buckinghamshire
What a insensetive thing for you to go through.

Dear Sammy,
I cannot understand WHY you had not been invisted into the meeting. With my husband I was present. Although Peter was in the E.M.I. Unit the powers that be asked him questions about the home, staff, food etc. At the end he was informed that they would be keeping him there. His reply was fine. I was completely devestated as you can imagine.
The S.W. even though I was present still gave me a complete report. You are his wife and your rights seem in my opinion to have been disregarded. To suggest a problem in your marriage seems so hurtful. Have they not thought that he is nervous after all this time in returning home.
I know you will need a lot of strength but I would (and I am a placid person), let them have their say and give them hell. You should not be treated like that.
I pray that all goes well for you. God bless. Christine
 

sammyb

Registered User
Sep 19, 2007
126
0
Nottingham
I don't think my husband had said anything untoward about me in the meeting. I think the SW would have been happy to have told me if that had been so. He saved it all up for me later!! When talking to the SW she seemed to be searching for answers as to why he didn't want to come home with him having given no explanation so the first one she plucked out of the air was marriage problems and also said that he must have had the AD for years - in other words I was useless at spotting it. On that score I still think the various hospitals are worried about being sued. If it was left to my husband's sister she would have had the lot in court already. But I have been too wound up in what has been happening and trying to get him to eat and drink that any other issues have long since gone out of the window. I have been so looking forward to him coming home and, like anyone else, I was/am nervous but now I don't feel I will be able to be 'normal' around him for fear of my saying or doing the wrong thing.

Love from Sammyb
 

christine_batch

Registered User
Jul 31, 2007
3,387
0
Buckinghamshire
Dear Sammy,
Is it possible for your sister-in-law to come with you for support. My heart goes out to you. I wish I could give you any help but I can only offer your my love.
At the time of Peter's meeting, I wanted him to say I want to go home but he did not and you feel now completely gutted.
hristine
 

sammyb

Registered User
Sep 19, 2007
126
0
Nottingham
Completely gutted Christine, completely. Throughout the whole emotional and physical roller coaster of a ride I had not expected things to come completely off the tracks at this stage. Ever the optimist I am hoping tomorrow will look better. Perhaps now the idea of his coming home has been put into his head by everyone else, he may actually believe it might be true and start to prepare in someway for his home coming. That slight chink when he said he would come home if I insisted made me think that perhaps all was not lost yet.

On a brighter or spookier note, I installed the baby monitor/alarm thing last night and thought I ought to have it on for a few nights to get used to the noises the house makes in the night. We have poltergeists I am sure!! What bangings and clatterings there were last night!

Love from Sammyb
 

1234

Registered User
Sep 21, 2005
43
0
bradford
Sammy b I have been in tears reading your posts, new how much you wanted him home, and you know how much he loves you, it is just this bloody alzhiemers messing with us, cannot say don.t feel hurt because you just can .t help but feel that way, just hang on to the love you both have shared, and hope that the powers that be have some compassion and do not do everything by the book,will be thinking about you both
Pam
 

christine_batch

Registered User
Jul 31, 2007
3,387
0
Buckinghamshire
Don't give up hope

Dear Sammy,
I know this is hard but try to keep an open mind about your husband coming home. What proof have they got. i.e. they can say one thing one moment and then change it the next. Unfortunately as we know with this illness it can happen. Have the staff seem you to-gether ? Does he let you kiss, hug or hold his hands ? Sorry it is question after question but with what I have experienced with patients at the A.S. Branch the powers that be interfer, put ideas into their heads. Perhaps he was trying to say he did not want to go home because of the change and it has been a long time away from home and deep down some part of him may be thinking of you with the the caring etc.
The last thing you will feel like is a laugh but here goes. Are you sure your gremlins are not a group of S.W. at work. As you can guess I have had very bad experiences in that direction.
Wishing you all the best and please try to stay positive.
Do take care of yourself. God Bless. Christine
 

Margaret W

Registered User
Apr 28, 2007
3,720
0
North Derbyshire
Sammy,

I don't come on this site to give cuddles, but I think you need one. Accept it.

Your story has brought me to tears, and I am usualy quite pragmatic, and screwed up about my own situation.

You might never find out properly why your husband is in this position, the staff seem to be a bit disorganised, I would just get him home and see how it goes, and if it doesn't work, well, you have the option of him going back to hospital. You can't really do any more than give it a try.

Ask your social worker for support.

Sorry not much help, but have that cuddle I gave you.

Keep us informed please.

Margaret
 

Taffy

Registered User
Apr 15, 2007
1,314
0
I asked him a little bit about the meeting. He told me in no uncertain terms and very nastily that he wouldn't be coming home but then said he would try it for a week if I insisted.

Dear Sammy, you must feel like your being put through the wringer and hung out to dry. On reading your post I agree with Christine heavens knows what could be going through his mind. He would more than likely be a bit institutionalized by now, as well. He could be thinking that it will be such a heavy load for you to be his carer and maybe this is his way of not seeing you with what, he may see as a burden.

As for the SW, I wouldn't read too much into that as it is only human nature that people jump to conclusions, they never seem to step out side the square. I think it's a positive thing that your husband said he will give it a try, it's highly likely that once home he will settle again and establish a routine BUT it will probably take longer than a week as he has already been away a long time.

You and your husband have been through so much this past 6 months I hope that he comes home soon and settles well and this can be put behind you, hard to do I know. Caring Thoughts. Taffy.
 

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