residential care

[Joy]

My husband is 55 years of age and was diagnosed with frontal lobe dementia 2 1/2 years ago.He was sectioned under the mental health act just before Christmas 2003 because his agression and paranoia became out of control. He is now going into a nursing home and I was hoping there maybe someone who can advise me as to what I should expect to look for. Funding has not been sorted yet and so I am not able to look at any places but it is going to be a major step for my husband and I want to do the best I can for him. He is now very placid on minimal medication but in need of professional care. It has all happened so very quickly. The last 3 months have seen such a rapid deterioration I can't believe it. He has also lost a great deal of weight.
I have tremendous support from my husbands family and also my 2 wonderful daughters but do feel very alone at times.
They all live away apart from my sister who is great but I feel that if someone has been through this and can give me some advise I would not feel so out of my depth.

 

[Ruthie]

Dear Joy

I hope this forum will help you in some small way to feel less alone - it has certainly helped me a great deal to find that there are so many other people out there experiencing the same things and understanding what you are saying, no matter what.

Your posting rang so many bells with me - my husband is also under a Section 3 and was admitted to an NHS hospital dementia assessment unit just before Christmas after a rapid deterioration in the last 4 months following several years of slow progression of the disease. He too was aggressive on occasions, usually when he didn't want to have help with dressing, bathing etc, or when he wanted to get out of the house in the middle of the night and I tried to persuade him otherwise. You may also have read on a previous posting that the final decision sort of made itself when he turned a gas tap on in the night and luckily I woke up and managed to avoid an explosion! My husband, like yours, also lost a great deal of weight around the time the deterioration started, but has now put it all back on again.

Has your husband been tested for other conditions eg urinary or other infections, as I understand that these can lead to sudden deterioration? My husband is being investigated for prostate problems (awaiting cystoscopy and biopsy) as a urine flow test and ultrasound revealed that there may be a waterworks problem. Not sure if it will be any help, as I understand that even if the underlying cause can be remedied, it doesn't usually reverse the mental deterioration. But it may prevent or alleviate possible physical discomfort, so I want the investigation to take place.

It is such a terrible blow when you finally have to come to the decision to let your husband go into care after struggling keep him at home as long as possible (and even when it feels impossible). My two sons (who live away from home, but visited over Christmas), my husband's twin brother and other friends all did their best to keep me occupied over Christmas, but it was hard to keep a brave face on things, and I've had a good many tearful times.

Over the following two weeks I started to come to terms with it all to some extent, as my husband settled down on the ward immediately (it was the one he had been on before) and seemed reasonably happy, but two weeks ago he was suddenly transferred with little warning to an adjacent longer stay ward to continue his assessment for permanent care. The ward has quite a different atmosphere for a number of reasons, but mainly because most of the patients are much older, more advanced and many are completely immobile and unable to communicate in any way, which seems to affect the spirit of the nursing staff. My husband is still mobile and aware to some extent of his surroundings, and for the first week was very unhappy and tearful. He was also confused by the move and has had incontinence problems (which he didn't have at home, even in the last week when I had to show him where the toilet was every time) so have given the consultant and the nursing staff a piece of my mind! I could do without this right now.

Just this week he seems to have settled a bit, but is still confused and lost, and says things like "it's horrible here" - about the longest coherent sentence he's capable of now. The consultant has agreed that his brother and I can take him out of the ward for short outings (he is a big strong man and if he decided not to return I would need his brother to help).

You shouldn't feel guilty - you have done everything you can, and you wouldn't have let your husband go into care if you could have coped any longer - but I know it's no good saying that to you, as we all suffer from guilt to some degree. I am glad that I did make that one last attempt to have my husband back at home, even if it went pear-shaped in the end, as I think I feel slightly less guilty than if I'd just given up while he was in hospital the time before - perhaps you too can feel a little less guilty because you did this as well.

Of course, the other problem is that Disabled Living Allowance and Carer's Allowance stops as soon as permanent care starts - so I had to go to the Job Centre to sign on immediately after Christmas as my means of support became very slim - the last thing I felt capable of was taking on a full time job if it was offered - but needs must! A very understanding advisor said that I couldn't possibly be in a fit state to look for work after everything I'd been through, and that I was to go immediately to my GP and he would sign me off for Incapacity Benefit. He agreed that I needed to rest and recover from the stress of the last few years, and has signed the note for me, which helps, as my husband's hospital is 20 miles away and it takes about a 3 hour round trip to visit for an hour. I think that the financial implications are much more significant for families of those with early onset dementia.

I have found that the Age Concern website has some excellent and quite detailed information sheets about going into care and charging for care. They are free of charge. The Alzheimer's Society also has loads of information sheets and have a helpl line for advice. I think the website links for these two are in a "sticky" note at the top of the general discussion forum.

I have just found the Care Standards Agency site (I think it's www.carestandards.org.uk, but a search for "carestandards" should find it). This publishes very detailed and recent reports on care homes of all sorts and is one way of checking out quite a lot of information about specific care homes. I am told that my husband will need to go into a specialist care home because of his "challenging behaviour" and escaping abilities, but they are not sure which one is appropriate. They are very limited in number in our area, and none nearer than 20 miles away. I'm in limbo about this and certainly don't want him moved until a really suitable place is found, even though the Consultant does admit that his current situation is not appropriate.

Well, I seem to have run away with myself - I'm sorry I have gone on at such great length - partly "sounding off" for myself, I'm afraid, but I hope that some of the leads to other sources of information may be of some help.

Kindest regards - will be thinking of you. Please let us know how things go.

Ruthie

 

[Geraldine]

Dear Joy

I am in a differnet situation to yourself in that it is my Mum who has Dementia and she is 80 but I had to select a Nursing Home for her after she deteriorated rapidly over the summer after living with us for 8 years. I found it most distressing the worst part was thinking about the situation once I actually starting doing something I felt more positive (An odd word I know - but until I picked the phone up made some appointments I felt as if I wsa sinking ito a black hole) Once I went to find what was on offer I felt much better. I made appointments to see 3 homes in our locality in one day, because that was when my husband was free and I needed his support. It was exhausting but useful to compare them all. All the home seemed fine but I was particulalry impressed with one of them. Giving them no idea about my choice I went back the next day unannounced, I was invited in immediately and promptly taken to the staff room for a coffee and a chat with a senior care assistant who offered to show me anything I wanted to see again. My mind was made up we made the necessary arrangments and Mum was moved from hospital 2 days later. She was initially very distressed but no more so than she had been at home and now 4 months later seems to be more settled and is building relationships with the carers. I visit a couple of times a week (I work and have a 9 year old to look after). I would start looking around even if the funding is not sorted out, it will give you an idea of what is available, I think the homes will give you guidance about funding. I found the advice sheets on this site extremely useful.
I wish you luck in what I know is an extremely traumatic time

Geraldine

 

[Brucie]

My wife started to show symptoms when she was 50 and for ten years I progressively cared more and more for her to the point that I simply didn't go into work [with their knowledge] for the final six months she was at home.
She had an accident while on assessment at the hospital and after that there was no option but for her to go to a care home.
I am fortunate in that all fees are paid on a Continuing Care basis.
Her home is excellent as it can be [nothing would ever be good enough of course] and we find that a partnership between the home and the family is essential to gain the best care for my wife.
We fought a long time to get her a special bed from Germany [£4,500, all funded] that enabled her to sleep properly after spending 18 months crawling round a room covered in mattresses. We also fought for funds for 1-to-1 care during the day. I rather fancy we have been fortunate, but it nearly killed me getting to the present stage.
Now we have a fight to stop the home being charged with abuse because - with my permission - they restrain her during mealtimes with a seat belt. The NHS and Social Services people seem to have no practical knowledge of care, or the need to prevent injury to the patient and the staff.
My wife's family effectively abandoned her as soon as her symptoms became obvious so I have always been alone in looking after her needs - except for a small group of really true friends.
Younger people with Dementia seem to struggle more against it than the older people and that in itself makes for more strain for the family.
Good luck. I have kept copious notes of our experiences over the past ten years and I'm happy to share them. One thing I have learned is that no two stories are ever identical, though many aspects may be.

 

[janemary]

Dear Joy - I have just come back from visiting my husband in the lcontinuing care ward of a dementia unit for people with complex problems. He was about 58 when he was diagnosed with vascular dementia and his condition slowly deteriorated until a sudden and rapid change just before Christmas. I felt relief at first that he was being taken into the ward as he had become aggressive and unmanageable, but now I feel heartbroken seeing him so despairing. I can't think of any alternative to his being in care, but wish there was more being done for him and others like him.