Is anyone awake to hand hold through a hard time?

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.

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

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

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

You're in my thoughts tingaloo.

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

"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.

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.

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.

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.

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.

Day6, what a beautiful post- I couldn't have said it better. I've also told my OH and my children that they must never ever sacrifice their own life to look after me, day in, night out- if I ever was struck by Alzheimers- and let professional do the daily tasks- but as you say, be there to keep an eye on things, from the distance of their own lives and happiness.

And as jingl says, take care of YOURSELF- you won't be any good to anybody if you don't- and put your foot down about your rights as a carer.
Sleep tight tonight.

Good morning tingaloo. How are you both today?

I hope today brings you and your husband the attention and support you need and deserve. A friend who is involved with the Alzheimer's Society tells me they have a helpline and a chat room which might be of interest to you. Stay strong.

The Alzheimer's Society helpline, also called the National Dementia Helpline is 0300 222 1122
It is open Monday - Wednesday 9am - 8pm
Thursday and Friday 9am - 5pm
Saturday and Sunday 10am - 4pm

My friend (whose late husband suffered dementia) also said the hospital should be liaising with Social Services regarding your husband's discharge. I know other posters have also said this.

All the best.

I agree it is totally unreasonable to call you back to the hospital and they will surely pay more attention to the problem if they have to deal with it.
You ate doing a great jobtingaloo but now need help and support.

God bless and help you to cope darling - you put a lot of other peoples little niggles and worries into perspective. Take care of yourself .

Hi Tingaloo, some good advice above.
I had a somewhat situation with my husband who died in February. He had dementia. Inevitably, the swallowing was compromised (I was a Speech & Language Therapist and part of what I did was bedside swallowing assessment). He developed pneumonia through aspiration of food/fluids. The pneumonia was treated with everything available, but then they suddenly withdrew all medical support because they realised he had severe dementia and were going to send him back to his care home (not a nursing home) saying he had "no more medical or nursing needs" but could be "carefully hand fed for reasons of comfort only". Despite my previous clinical experience, I was at sea! I knew they couldn't send him out without a safe discharge plan, and they couldn't do it without my consent. I hadn't even met the consultant who made the decision, so that was my first action - meet the consultant and demand written copy of the safe discharge plan. I had to threaten PALS (Patient Advice and Liaison Service) to even get to see the consultant. Through a family member working in a hospice, I was told that we could self-refer to Palliative Care Team. We had been declined access to them by the consultant who said that a person has to be likely to die within hours to be referred - WRONG WRONG WRONG! A person qualifies for Palliative Care if their doctor can answer 'no to the question 'Would it surprise you if this person died within 12 months?'. We got Palliative Care involved and magically, the hospital social worker came to assess and a place was found in what is called a 'Consultant-led bed' in a specialist Nursing Home. It was such a relief - not ideal, but pretty good. We had all the family around and we could visit night and day in a very home-like environment. A consultant geriatrician visited and planned with us and a GP was on call night and day. The Palliative Care Team were also on call. Sadly, my husband could no longer swallow safely and he took very little food or drink. He was very peaceful, though. He became very weak and died peacefully 2 weeks after going into the Nursing Home.

My advice to you is to get in touch with PALS about the hospital. They should not call you at home because THEY can't cope (they should have contacted Old-Age Psychiatry about the delusions). Meanwhile, you want a proper assessment and safe discharge plan and PALS should help to make sure they get that done. REFUSE to take your husband home or anywhere until you are happy with the plan. I know you want to, but can you seriously do everything yourself? Contact your Palliative Care Team for advice. Sorry to sound very directive, but I am appalled by repeated stories of hospitals fail to cope with people with dementia and their families. Hope you get the help you need. Thinking of you!

Don't forget Tingaloo that the Samaritans on 08457 909090 are there 24/7 when you need to offload your frustrations! They can't give you advice but they are an empathetic ear when you need one especially at 4 am when the world can seem very grim. I hope that help and support are on their way.

Dear Tingaloo, apart from joining the book club this month and a sewing question in the craft group, this is my first posting. Your plight just made me want to add my kindest thought to you, I can't add to the wonderful words of wisdom and advice you have received here. I so hope that the situation is resolved for you and your husband - and soon. x

Some brilliant advice. Put your own health and welfare first otherwise your DH could suffer if you weren't there as his advocate. Remember the advice on a plane put your own oxygen mask on first. They say it for a reason.

hope you can get things sorted tingaloo - or at least started. there's loads of good advice on these pages and my heart goes out to you.
you've done as much as you can on your own and it's time to get other people involved - sounds harsh but it's true. my mother tried to care for my father when he was diagnosed with alzheimers but she wasn't in the best of health herself. it ended when she collapsed and had to be hospitalised so he had to go to a care home because there was no way he could look after himself.
unfortunately my mum died a couple of months after this [she'd had bladder cancer but nobody knew and she died of septacemia] although my father lived for just over a year after.
thinking of you - and hoping things will start moving now.

We have just seen the consultant. He is surprised the hospital social worker hasn't been round yet, and will want to know why when he has his meeting tomorrow. He warned me that Social Workers often consider a hospital admission to be equivalent to respite. Ha ha! I have been here with him practically all day every day since he came in, as well as three nights in a chair! Respite my a**e (sorry).
He is also referring him to be seen by elderly psychiatrist (psychiatrist for the elderly, he/she might be quite young!). So things are moving, albeit slowly, and I feel a little less abandoned.
Dh pleased and relieved to see me this morning, calling me by my name, but then started telling me about "my present wife" (we were both married previously to other people, but have been together for 30 years). Was then surprised to hear that I had attended his wedding - to me! He was also adamant that he had spent yesterday evening in the pub with my daughter, who came up to see him in the hospital. He is presently gearing up to his usual emotional blackmail because I will be going home later. He certainly hasn't lost his marbles as far as trying to manipulate me is concerned!
I am just so grateful for all the support I have had here.