Is anyone awake to hand hold through a hard time?

Hi tingaloo,
I hope you managed to get some sleep, and remember to eat, as I know you want to look after your hubby, but you need strength, I agree with Galen, Do you have any help?
Nana3, has a good idea, maybe that will help you too, #
Know that even though we only virtual friends on here. we care sweetheart, so don't feel alone Sending hugs xxxx

Tingaloo, I'm sorry I didn't see your message sooner. I was in an identical situation for 2 years prior to losing my husband 3 years ago, including the security restraint in hospital and the hallucinations. Because my husband was a lot older than me, the hospital assumed I was the same age and called my son in the middle of the night. Having some experience of the working of the nhs I kicked up such a fuss that he was transferred to a single room where the noise and light of the ward didn't disturb him. But for whatever reason the refused sedation and more importantly didn't call out the psychiatric team, which they should have done. You should ask if this has been done.
As its now a week later I hope you and your husband are peacefully at home. Sadly if your husband becomes too difficult to handle you will have to consider residential care, there are some very good homes out there with superb caring staff.
I was lucky, I knew a private career who would come and give me a break occasionally and who was brilliant with my husband, I also had the local social services team in to help get him up and dressed each day and in my area this was a free service for the first 3 months. But it's very much a case of if you don't know who to ask you don't get. I found the once he had been assessed the local dementia team were a brilliant source of information and help.
I know that different areas have different set ups, and I wish I could be more help. My thoughts are with you, hang on in there and make a fuss if you're not getting the attention you need.

Tingaloo
Where do you live? Would you like some company at the hospital with you? Sometimes things are much easier to cope with if you just have someone by your side

Just sending you my love Tingaloo. I am thinking of you.

Gosh, what a desperate situation!
I feel it ought to be possible for the hospital to arrange for a few days of respite care on d/c from hospital so that you can rest a bit before your husband comes home.
I agree you really need to discuss it with management and be firm with them.
I wish you some comfort soon.

Thank you everyone. We are home now. The trip home (all of 15 minutes)exhausted dh so much that he slept most of the evening, and then was totally disorientated during the night, thinking it was lunchtime. Much more lucid, and back to his old self this morning, and I have managed to trim his beard and give him a haircut. Now gearing up to a bath. I have to admit there were a couple of times in the night that I wondered whether I had done the right thing bringing him home, but feel much more positive this morning.
He has completely forgotten the layout of our flat, and needs guiding to the bathroom. He has also already forgotten that he was in hospital, although he is vaguely aware that he has been away.
One thing you may be able to advise me on. We have always slept on a double futon (old hippies!), but he really can't cope with getting up and down on and off it, so I have decided to buy a 5' adjustable electric bed - we can't fit in anything bigger. Does anyone have any recommendations, or experience of what to buy or not to buy? I believe I would be able to get vat knocked off with the correct medical proof.
While I have been posting this, he has been falling in and out of sleep, and talking away. I can't make head or tail of any of it, so am just agreeing with everything. This has been going on for a while since before the hospitalization, but seems worse now.

Good to see you're feeling more positive. All the best x

...Just popped in to say 'hello' I can't advise on the bed. I slept on a futon for years, they're very comfortable, but like you I now need something a bit higher up, so will watch out for views on adjustable electric beds on this thread

Don't buy a double electric bed. I had our double bed adjusted by occupational therapy, but in a very short space of time he was incontinent and we were supplied by occ therapy with an electric single bed, not very glamourous but served its purpose for over a year and its adjustability made getting him in and out so easy. 'Cosmetic' electric beds do not have an up down movement, just structured lifts at both ends, which is no good if your husband eventually needs assistance getting in and out. the electric beds are also very expensive, if they're any good. I've just bought a single one because I need to sleep in a raised position and that was over £2000, many of the companies were quoting over £5000 - for a single bed!!!! Go down the occ therapy route of a free hospital bed, if you've got the space, and if you sleep in another room set up a baby alarm.

Re the disorientation, make large labels words and pictures for each door, cupboards are often mistaken for toilets. Hope all goes well, glad he's home.

Please ask Social Services to refer you to their OT - this should have been done before you left hospital. They will be able to organise the loan of a suitable bed - we got this for my Dad and it was a great help.

Let us hope that your dear OH settles down a bit now he is back in familiar surroundings; but please do not hesitate to keep knocking on doors for any services that might help you - you have paid lots of taxes over the years and it is right that you should now tap into all the services that you can find.

Yes Westie, he did ask if the cupboard was the toilet today, and when he was in hospital was wandering into other people's cubicles looking for the toilet. Luckily, guided away each time before any embarrassing occurrences. Thanks for the tip about the hospital bed. We have shared a bed for so long, that it feels like a huge step to have separate beds, but I guess the threat of incontinence looms. Oh this is all so horrible, not what my retirement was supposed to be at all.

Thinking of you and hoping that things are improving and you are getting some more help

Would two singles that can be fixed together then separated if /when needed be a solution? I know that friends said when the mental intimacy begins to go due to dementia the physical closeness is comforting for both partners.

www.linxbeds.co.uk/zip-and-link

I don't know if anyone else has said this but you must contact the Alzheimers Society on ttps://www.alzheimers.org.uk/ They are the people to talk to. I went to a talk on Dementia last week. There are several types and having halucinations is one of the types. You need local contacts living through the same situation to compare notes and get help from, try and find a group. Ask you doctors, health visitor, etc. This is not a situation you can cope with on your own. Nan3 has some good advice. Stay brave Tingaloo

I have no advice for you as I (luckily) have no expereirence of any of your issues. However, I did want to send you best wishes and that I hope you can find the strength to deal with this very challenging time of your lives.

Hugs to you . I care for my dad who has dementia and cancer. What can I say, it's hideous. Take care of yourself as much as you can and remember your tablets. Be kind to yourself too.

When a parent learned her child had Down's Syndrome, she said she had not planned for it, obviously. But she said that it was like getting on a bus, she had planned to get on one bus but had got on a different one. I think about this often. We all do not know what life has in line for us, but we get on with it because we love our loved ones and find the strength to cope.

You are a wonderful person.

Dear tingaloo such a huge learning curve and what a lot of things you are coping with! I do hope that you soon have all the care that you and DH need in place and all working well.
Such a wealth of knowledge and experience on here makes this such a valuable resource.
I take my hat off to all you carers out there and send every one of you kind thoughts, best wishes and prayers.

Thought I'd update on my poor husband. After his discharge on the Saturday, he spent a week at home, with the delusions becoming worse and worse. On the Friday, I could not rouse him properly in the morning, neither could the paramedic 111 sent round, so she called for an ambulance to take him to a&e. The trip and the fresh air seemed to revive him, and we spent the day there, but were sent home as they could find no sign of infection, with a follow up appointment booked for the Monday. The weekend was difficult as he became increasingly agitated, trying to leave the house in his pyjamas at various times of day and night. It culminated in the early hours of Monday morning with a psychotic episode, during which he attacked me, hitting me and banging my head against the wall, and threatening to kill me. Luckily, he is quite weakened, so I ws not injured beyond a bit of bruising. I could see my phone, and wondered whether to ring for help, but was afraid it would exacerbate the situation. He eventually calmed down, and I cradled him in my arms for the rest of the night. At the hospital appointment the next day, he was admitted again for both his and my own safety. That was one week ago. He is on the same ward in the same bay as he was before, and although he says he has no memory of being here before, he keeps trying to get into his previous bed, even with the current occupant in it. On Thursday, they discovered that he does have another chest infection, and he is on a course of iv antibiotics. We are hoping the infection is the cause of the delirium, but he remains totally confused and quite agitated to date. I have said that I want him to go into immediate respite from the hospital, as I need time to process what has happened, and can't begin to do that while allmy time is spent visiting him. I have always said that my two bottom lines as regards residential care are incontinence and violence. I am remaining quite strong, with only a couple of minor wobbles as I face up to the fact that residential care, and the end of our life together is a real possibility.

Oh tingaloo - what a dreadful time this is for you. I do hope that there are professionals around to guide and support you, and friends and family to hold your hand.

Dementia is so difficult for the family, spouses in particular. The illness seems to tinker along for several years and then suddenly get worse in the step-wise fashion that you are describing; often in the winter months when there are lots of bugs around.

You are having a real struggle just now and I do wish you well. I understand your two "bottom lines"- they make perfect sense, both for his sake and for yours. You must keep yourself safe.

I am thinking of you and holding your hand over the ether.

I hoped, as we haven't heard from you for a little while, that maybe things were improving for you, and so I'm saddened that there's been such a dreadful turn for the worse, with your DH physically attacking you. I can only add to what Lucygirl says and hope you and DH will both soon find a peaceful solution to what must be hell on earth for you both.

My dear girl my heart goes out to you in the decisions you are going to have to make.
You must do what is best for you first and him second.
I am on the same path but not as far along as you and I am full of foreboding for the future
I cannot even think that my H could turn violent but with experience I know it is a possibility. He regularly snaps at me. My friend's BiL kept on driving after he was stopped and when everyone tried to talk to her she said it was easier than getting strangled. Family friends eventually told her son they would report it to the Police if the family didn't act. It was obvious she was terrified of him. He is now in care. Good luck with what happens in the next few days. Retirement must seem like a bad joke.

I hope you can take time to consider your options in this distressing situation. Wishing you well.

Have just revisited this thread and I feel so deeply for you. As so many people have said, 'Please take care of yourself and accept all the help that you can'. and hugs.

Having worked with 'violent' dementia clients for years please please put yourself first. You are who the most important person right now. The person you loved has gone ????

Just wanted to say take care of yourself and that you are in my thoughts.