Is anyone awake to hand hold through a hard time?

You come across as being a lot more positive and I hope DH son coming to visit may take some responsibility off your shoulders, even if for a short time

Good morning. Dh has been a.sleep most of the morning since I arrived. He had another agitated night, apparently, but I was not called in. No more news on the SW front (!!), and he should see the consultant psychiatrist in the next couple of days. I have made it very clear that I cannot have him home until he is calmer, and I think they have accepted that. They are also asking the urologist to come to see him, although his problem might have to be dealt with through outpatients. Good news is that his son is coming up from Wales to see him on Thursday and Friday.
When I told dh, he said he hadn't seen his son for years, although we last saw him at the end of October!
Thank you, everyone for your posts and pms. They mean so much.

my father had Alzheimers and it was a complete nightmare for 2 1/2 years. so I really feel for you. we did get a lot of support from Berkshire Social Services, but that was a long time ago. it seems yet again to be a postcode lottery. All the above suggestions regarding sitting tight and insisting on help from the various agencies are totally valid so good luck.

someone mentioned contacting your MP. I twice had to contact mine in the past, once about my son's education and once about my home help's housing. the response and solution was immediate and positive - except that it back-fired with the homehelp as she was rehoused miles away and so I lost a very good homehelp! this was a Tory MP and though never having voted for him I do believe that Tory MPs are very good at the 'grass roots' level. Good luck and try to get some sleep.

Good morning, Tingaloo, x

Good morning - how are you both today?

Tingaloo I hope you were able to go home and have a good night's sleep tonight.

Hello
Your local Social Services should arrange for you to have a Carers Assessment so that your needs are taken into account. Your ability to cope can become compromised if you are constantly exhausted and worried.

Your wellbeing is important also. I suggest you contact Carers UK or some Carers organisation local to you. They will be able to advise you of what is available in your area, and how to negotiate services. You may be able to get some respite care for him because of your needs if he returns home.

There may be a Carers Group where Carers mutually support one another which many find helpful.

Please make it plain to all concerned how abusive he has been towards you. I know you love your husband, but abuse is still abuse and you need to be safe and feel safe. There is a duty of care not just to him, but to you also. If the decision for him to return home is taken, accept all the help you can get. You deserve it.

I will probably not be liked for saying this, but if he returns home and you are frightened or he does hit or push you. Please call the police. They are very sympathetic in circumstances like this, and can help with getting emergency help.

Wishing you and DH all the best.

So glad things are moving and I'm sure you've found the advice on here helpful. I look forward to hearing how things are going.

I don't know where you live but here in Suffolk you can ring Social Services direct. They are in the phone book as Customer First. Your husband should have his own social worker and they should help you fill in paperwork for help, including help with personal care and possibly funds to help you. This is not means tested. I had a lump sum in the last two years of my husband's life and spent one lot on a tumble dryer as his dementia meant I had a lot more washing than normal. It was not much but it made me feel more valued as it was just for me. Via my Gp I once got a week's emergency respite as I was completely exhausted as he hardly (and I mean that ) slept at all at night.
Do look at the forums on the Alzheimer's website. Many of the stories will give you comfort or ideas and some of them will make you laugh.
You are very lucky to have an Admiral nurse, perhaps she could be with you at any consultation. Remember, whenever you fill anything in think of the worst he is , do not gloss over anything . The more ill he sounds the more help he will get.
When you are tired and sad it is almost impossible to remember the good times, or see your way clearly. I do feel for you and hope you can be strong enough to make lots of fuss and not be too British with a stiff upper lip. A few tears can work wonders as far as sympathy goes. I'm sending you a hug. It was, and still is 11 months after his death, what I miss most.

So glad things are moving in the right direction. I hope this continues for you and your husband.

I have followed your story and have not found anything to add to what people have said, they have said it all. Thinking of you. Look after yourself, or you will not be able to look after him, whether at home or not, as much as you would like.

I'm so glad it looks as if you may be going to get the care plan you need - but a small word of caution which I really hope will prove unnecessary. When the care plan is agreed and you are about to bring DH home (if this is what does happen) do make sure on the day who is coming and when exactly.

Mum and I were told what care there would be for my dad, but when it came to the morning of his release from the respite home when I came to collect him it transpired no care plan had actually been put in place and we would be on our own. Do check!

I am glad that things are moving in the right direction; but really quite surprised that no referral has been made to the elderly dementia consultant until now. The GP should have referred him a long time ago so that you can get access to the services associated with his team - community nurses etc. They are the people who can help you too feel not abandoned.

It is up to the hospital staff to expedite the social worker assessment - sit tight and don't leave till this has been done!!!

Good luck!

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.

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.

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.

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

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.

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!

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 .

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.

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 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.

Good morning tingaloo. How are you both today?

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.