Is anyone awake to hand hold through a hard time?

Another ex-hospital assessment officer here, wanting to reiterate what has already been said. Please do not agree to your husband being discharged home from hospital without him having had a full care assessment from Social Services. The ward will contact SS requesting the assessment (once they regard him as being 'fit for discharge') and SS are required to complete the assessment before your husband can be discharged. You will be invited to the assessment and it will be your opportunity to explain your concerns regarding your husband's needs and the care he requires. It may be that he now requires 24 hour care, but the assessment is the beginning of the process to determine what his needs are and how they can best be met. It will be very difficult to get an assessment if he is discharged home, as he will be considered less urgent than someone who is 'blocking' a hospital bed. Thinking of you at this difficult time.

Dear Tingaloo, I cannot offer much more advice than all the words of wisdom, and compassion you've been offered. I too know just how long those nights in hospital beside a loved one's bed can be. It's a lonely place.

Am I alone in saying to my adult children that should I ever become a person they don't recognise at all, a person who is confused, agitated, without awareness, perhaps violent, angry, or even completely subdued and speechless, with all the bodily malfunctions that accompany a disease like Alzheimer's, then they MUST not feel it's their duty to care for me day and night. They must have me cared for by professionals and find a place in a home for me. Their duty then would be to ensure the home cares for me properly....and that would be it.

I have also told them I'll love them until the end of time, even if it doesn't seem as though I do.

I know getting the appropriate care isn't easy but I do hope a care plan is sorted out and the distressing times you are experiencing now are shared by those most able to support you in looking after your husband.

I am sure if he could he would say he didn't want you to have the pain you are experiencing in seeing his agitation and confusion.

You lose loved ones to Alzheimer's and that in itself must be so hard to bear. Your duty now is to remain strong and always be there for him, and for that to happen, his needs 24/7 have to be shared and your biggest challenge is to ensure he is well looked after - so that you can live (and rebuild) your life too, free of the agony of having to hand-hold during the day and night, at a moment's notice.

I know most of us would go to the ends of the Earth for our loved ones, but now is the time for the professionals to step in. That in itself must be very distressing for you, so I hope in the weeks and months ahead life becomes a little easier for you because appropriate action is taken. Stepping back is so difficult, but I think you must insist that you cannot continue as his sole carer.

Thinking of you going through this. What a worrying, but very sad time it is.

tingaloo I hope that tomorrow brings positivity for you. Please insist on seeing a Consultant, and having a social worker or equivalent look into the entire situation, to very much include your own health and well being.

It will get more attention if you refuse to have your husband at home at present, do not feel guilty about this.... it's the only way to get attention and help. Also don't be browbeat into accepting a lesser arrangement than you are able to cope with.

This is now your chance - please go for it.
Do you have anyone/a friend to support you in meetings with those in authority.

tingaloo I'm pleased to hear that things are not quite so stressful at the moment. Perhaps your husband gains some comfort from the belief that he is in a theatre, since it is a more familiar situation for him.

"Don't always read the notes"......what can I say?

Maybe it is a blessing that he thinks he is in the theatre. I am glad that he (and you) had a better night and hope that you can get some help from the medics tomorrow and some plans in place.

Keep us up to date on how things go - I will be thinking of you.

Dh had a calmer night, and I was able to sleep the night at home, coming back to see him after breakfast. I have some chores to do this afternoon, so will leave after lunch, and return for the evening. Skeleton staff today, so nothing can be sorted out until tomorrow. He is still in a lot of pain with his chest, I am sure he must have pulled a muscle when he was so agitated yesterday. Also, he has a slight problem being unable to retract his foreskin, and it has been bleeding. The nursing staff said they will put it in his notes, but I must raise it when the doctors come round tomorrow, as "they don't always read the notes" !!!!! Dh is still confused, he knows who I am, but keeps asking if we are married. He also is not sure all the time that he is in the hospital - he thinks it is a theatre and is waiting for the show to begin. He says the other patients in the bay have been rehearsing, and is confused when their cubicle curtains are owned or closed, thinking it is the curtains on a stage. He used to work in the theatre as a set builder, so I think that is fuelling the delusion.

Tingaloo - are things getting sorted a bit? Is OH any better? Thinking of you.

You're in my thoughts tingaloo.

tingaloo I hope things are beginning to look more hopeful for you.

Good morning tingaloo [brew}. How was your night???

Thinking of you Tingaloo and hoping that you manage to have a more restful night.

I've come to this late I'm afraid Tingaloo. I've no experience of your situation but I would say don't hesitate to get others who are involved in his care to intervene. When DH was on a surgical ward and having a lot of problems his cancer consultant was in every day to make sure he was getting the treatment he needed. Don't think they liked it, but his consultant was much more concerned about his well being than the feelings of the ward staff.

I hope you and your DH have a peaceful night Tingaloo

We're still here

I know this isn't related to the thread so apologies!
Galen you make me feel lazy!. I retired at 56 worn out with General Practice and caring for my elderly blind Mum at the same time. I have no regrets. I love retirement but am sad to see the NHS going through such difficult times.

tingaloo I'm sorry to be late picking this up but I am so glad that there is so much good advice here and that you are feeling positive about taking it. I hope this weekend isn't going to be as bad as last night was.

Ive given up full registration now as difficult to revalidate. I'm 71 in a couple of weeks! The D of Justice say I'm too old to work at 72. My brain is obviously going so I'm looking round for my nursing home!

Galen please don't retire!

I agree with all the comments on here. My mum became impossible to cope with when her dementia became worse and the Home had to take full responsibility regarding correct sedation although they always asked me before giving any drugs.

When my husband had cancer and suffered two strokes I had to give up control to the hospital. I hated doing it but he needed more than I could give in the way of physical care but I continued to support him emotionally until the end.

It's so hard to do this and so so much harder for me with my husband because he was only 67 and mum was 90 and had had a long life.

tingaloo - my heart goes out to you. I hope things are working out for you both.

Ooops sorry posted twice. I am so used to having to repeat things ad infinitem....

Wow, I feel overwhelmed almost to the point of tears by the support I am getting here. He is under the care of our local Memory Clinic, not in the same hospital, but in the same health authority. Lucky Girl thank you so much for your advice. One of the consultants here, who saw him when he was on the observation ward last week, also works in the memory clinic, and has been helpful in the past.She is not his consultant on the ward he is on now, but I could try to get to talk to her, although it might be breaking their professional protocol.
I agree that this current situation may be a way to get Social Services off their backsides, and get the help we need. Thanks for the info about continuing care at home.
I have spent the last couple of hours at home, not able to sleep unfortunately, but had coffee, toast and a long soak in the bath. I have promised my husband I will be back after lunch, so need to kick myself into gear. When I left he was about to have an ecg because of his chest pain. However, I think he might have injured himself when he was agitated last night, or it might be acid in his oesophagus, or a pain connected to his pulmonary fibrosis - he has been even more breathless than usual for long periods due to agitation.
He is an awkward old bugger, but he is MY awkward old bugger!

Good! Another medic on the team. I hereby retire!

OH has improved mentally since he got home . He is to be seen at the Memory clinic on Friday , he has been assessed before for this , but there is a big backlog . As far as I know the Memory Clinic is a kinder description of the Dementia Team

I am a retired GP. I am sorry you are having such a hard time Tingaloo. If you speak to the consultant or most senior Dr in team available it would be good to ask for a referral to the Psychiatrists for the Elderly. This should be an urgent referral. The Psychiatrists will have various options re medications to prescribe depending on your husbands other medical conditions. If he is recovered physically they may be able to transfer him to a psychiatric bed for a period of assessment. You need to say you have become frightened of him at times and feel at present you cannot cope alone at home. Physical illness often exacerbates mental health conditions. He may well improve to some degree. Wishing you strength and courage.