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Residential care - Carers UK Forum

Residential care

For issues specific to caring for someone with dementia.
I expect that what I am going to ask has been covered many times before here, so forgive me for raising it again.
My husband's rapid deterioration over the last 4-6 weeks is making me face up to the fact that I shall not be able to cope much longer. First, I have to face the daunting prospect of uttering the words 'residential care home' to members of his family, some of whom will undoubtedly think I am not trying hard enough. I have to face that on my own.
What I want to ask here is how those of you who have taken the decision to move a loved one to a home have discussed the matter with the patient him/herself? I know that during his more lucid moments, my husband will feel terribly hurt that I want him 'out of this house'. It's true that in his lucid moments, he can also see that I am at the limit of my ability to care for him, but as all of us know, the intellectual analysis of a problem does not always coincide with our emotional reaction to it. In his less lucid moments, which are increasing in length and frequency, my husband does not know quite where he is anyway, and does not recognise the house he has been living in since 1975.
Any thoughts, especially from those who have faced this, who have had to say to their charge, 'you are going to be moving somewhere where they can look after you better than I can', will help me.

Tristesa
Hi Tristesa

I don't know what solution to offer.
Unfortunately I had to call an ambulance and they took Dad to hospital as he was coming in to my bedroom in the night every 5 minutes saying I have got to arrange a funeral.
The ambulance men did not really want to take him in but I did warn them Dad was driving me round the bend and if he was not taken in they would be soon having 2 patients instead of 1.
He caused the staff some problems. He was getting in to other peoples beds and waking up other patients in the night.
Dad shouted fire on several occasions but suddenly a member of staff noticed some road workers had a fire lit in view of the hospital but it was not causing any danger to the hospital but they wondered if that was why Dad was shouting fire.
The nurses had to take his bed by their office in the end as he was annoying other patients.
Relatives visited him while he was in hospital and they saw how bad Dad was and the nurse did say to one of them she could not understand how I managed to cope with him for so long.
Dad was in hospital for 100 days. Homes were coming and said they did not have facilities to cope with him.
Suddenly a home was found with 24 hour security and he was moved there.
When Dad was in hospital he attacked 3 nurses. He has got a lot of strength so people know he was dangerous including the relatives.


Brian
I thought I would write an update on this.
My good angel has been the Admiral Nurse, who has not only advised me on how to approach the subject with my husband, but even more importantly, has spoken separately to my stepchildren, explaining facts that they might not have accepted from me, including the point that when long-term residential care is ultimately inevitable, it is less of an upheaval for everyone concerned, both the sufferer and his family, if that move is not left till it is dictated by some emergency, but is planned and entered into calmly, with plenty of prior planning and discussion. I have been getting more and more worried that something would soon happen, such as a fall in which my husband might really injure himself, or indeed, a serious health problem affecting me, and we would then have to sort things out on an urgent, even panicky, basis.
My stepdaughter and I have now selected a care home that seems very nice, and is only a short bus-ride away from our house. We were shown round it last month, and tomorrow, we are taking my husband there for him to get his first sight of it; he has also already been assessed by the manager of the home, who visited us for that purpose. Then next month, my husband is going in there to stay for a two-week period, to get the feel of the place. This may sound amazing, but he has actually said that he is looking forward to it, as a little holiday! I am keeping my fingers crossed.
We had a family meeting with JP, the Admiral Nurse, yesterday, in which my husband also took part (he was in one of his more lucid phases, fortunately), and JP spelled out the ways in which a good residential care-home can actually improve the sufferer's quality of life substantially in many cases. It occurs to me that from the point of view of my stepchildren and the other family members who see my husband for a few hours every week or two, nothing much will change. They will still be able to take him out to lunch or to an art gallery or the cinema. But for D., my husband, and me, there will be a big change, in that I shall be able to concentrate on him and actually enjoy his company when I am with him, because the huge burden of 24-hour care will have been lifted, and I will be myself again, a friend, wife and colleague, rather than a frightened, overwhelmed and stressed-out housekeeper/nursemaid. And for D., there will be opportunities to make new contacts and take part in activities.
I hope. It will cost a fortune, of course. But trying to adapt this house and paying for carers coming in would cost just as much in the long run, and would add to my stress rather than alleviating it.
Tristesa
Hi Trestisa

I can understand the problems you are facing. Unfortunately I did not know much about dementia and when I had problems with my father I was told it was things like water infections.
Unfortunately he was taken in as an emergency and was in a bad way and even attacked 2 of the nurses.
He was in hospital for over 100 days before any home would take him and it was an expensive home with 24 hour security as it specialised in taking the dangerous dementia patients and after some argument the NHS had to accept liability for Dad's fees.
Unfortunately Dad never settled in to the care home. He was wanting to come home and every time he went there he said the home and staff were taking his money.
He only lasted 7 weeks in care.
From hindsight I think I made a few errors and other people who are meeting dementia have learned from them.
Unfortunately I did not know about this site when I was caring for Dad. If I had I might have got help earlier.

Brian
Brian, we all have to learn these things as we go along. I think very few of us know what to expect in advance, and yes, that is one reason why a forum like this is so helpful.
Tristesa
Well Done .... An excellent and timely plan. Pleased you had an Admiral nurse.
So many folk end up in care following a crisis. I do understand from my heart that it feels much better when changing circumstances are not forced and rushed.

I hope all goes well for you both. I am sure you are prepared for some initial hiccups. A very difficult thing to do and you seem to be on course. Yes, well done.

I won't add any advice because I believe you are managing really well.
Well done for getting this far, I'm sure you will feel better when you are once more wife, rather than carer. For different reasons, it is looking increasingly likely that my mum is going to need residential care very soon, and I have followed Juggler's very positive experience and decided that if I could find someone suitable for mum, it would be nicer for both of us. Emotionally, this will inevitably be a roller coaster ride for a while, so be kind to yourself in the next few weeks. Keep us posted.
Thank you for the encouraging words. I am still holding my breath, of course, and there is still a fair way to go on this hard road.
The role of the Admiral Nurse has been vital, because he is not only a person who can look at the whole picture, but he is also knowledgeable about the complexities of the NHS and Social Services, and is able to advise on, and actually take over, some of the processes that are so difficult for those of us who are ignorant about them.
Three to four months ago, when I realised that my husband's condition was worsening and I would not be able to manage much longer, I told everyone, openly and honestly: I had been coping for more than 2 years, but I knew I was reaching the limit of my ability, physically as well as emotionally. I told my GP, my husband's consultant, the social worker, my stepchildren. All of them either (a) seemed not to believe me, simply did not hear what I was saying or (b) referred me to one of the others...
The Admiral Nurse listened to me, drew the threads together, and also educated my stepchildren, in particular, about the situation, so that they finally seemed to understand the problems.
I am keeping my fingers crossed. But oh, how desperately we need more Admiral Nurses, and how lucky I am that there is one in this area!
Tristesa