Not sure where to start - dad says he is miserable and bored in CH

[Confuzzed]

He's only recently diagnosed with some form of dementia (hospital less than interested in finding out, just wanted him shipped out of the ward fast), but sometimes I'm almost convinced he's getting better.

Conversations are becoming more rational, not less, and today he's cross that he isn't allowed out on his own for a walk. He's still a bit shaky on why he's in the CH though.

I'm presuming that it's wishful thinking on my part, and probably down to the CH being a calming influence in his life right now, taking away the stress of living alone and having to cope with day to day issues by himself?

However, he's getting very restless about being 'held prisoner', and also about not being able to fit in with the other residents, whom he sees as being too far gone to have a conversation with. Have to say, he seems to be right on that one, almost everyone else we've seen is at the vacant, non-verbal shuffling stage, whereas he's physically fit and can chat perfectly well.

Think what I'm wondering is whether I should push for him to be reassessed, just to check that he does actually have dementia, and isn't recovering from an undiagnosed stroke even though the hospital say they checked that.

If he does truly have dementia, where do we stand with the wanting to go out for a walk? I've suggested that he goes out with the carers, but he's adamant that he doesn't want to be treated like a child. I live several hours drive away, and it's so hard to figure out what's going on and what to do for the best.

His parting shot today was that he's going to have to force the issue if he isn't let outside soon, whatever that means. Does the CH have the authority to prevent him from leaving? Or am I going to get a call telling me that he's either vanished, or been locked up!

We are very new to all this, so any advice or ideas would be most welcome. It seems very hard to get any help from the medical profession, who have all said that there's no treatment for him, and his care is up to us - but we have no real idea of the options....or what's best for him.

Thanks

[stillcaring]

My aunt always felt she was in the wrong place because everyone else was 'batty', despite the fact that she was just as bad as many of them. However if you can see the difference between your dad and the others he may well be in the wrong place and it won't do him any good to be kept there, unless he can take on some sort of more responsible role within the home. ONe man in my aunt's home used to do the hoovering for the staff - it made him feel useful and that he wasn't like the other residents. I'm not sure if someone else hoovered after him, but it seemed to work.

I would discuss with the CH if they think he is correctly placed. If so can they suggest ways of giving him a more satisfying lifestyle? If they don't think he's in the right place, press for a reassessment or find him somewhere more suitable yourself. If they think he IS in the right place see if they can convince you that they can provide him with the stimulation he needs - if not again find somewhere else for him.

Good luck!

[sue38]

Hi and welcome to Talking Point.

I'm sorry to hear of your dad's diagnosis. You may well be right that the ordered life of the care home (regular meals and having carers to help him with dressing) as well as more stimulation (chatting to carers for example) may have led to him being more settled.

Can I ask how he came to be in the care home? Was he struggling to manage at home or getting lost? How was the care home chosen? There is quite a variety in homes, some catering more for people who are active and able to engage.

Has your dad been sectioned under the Mental Health Act? (see http://www.alzheimers.org.uk/site/sc...documentID=117) If not the care home may have to apply a Deprivation of Liberty Safeguards (DoLS) authorisation. (see http://www.alzheimers.org.uk/site/sc...ocumentID=1327).

[jaymor]

Hi,

Maybe at this point in time your Dad just needs a residential home. You do not say what type of care home he is in. If he is self funding then he can go anywhere he wants as long as the care home is happy to accept him.

Jay

[ggma]

There are several people in my Mum's care home who regularly take themselves out for a walk, this I understand is part of their care plans and they have been assessed as safe to do so. One man in particular goes for a walk every day and really seems to get a lot from it, even through the area is new to him. One of the ladies like to go to the nearest shop.

There is quite a mix of people in Mum's care home, it only takes 23 people, and because of some who have severe dementia the doors are secure, but those who are able do go out.

No none should feel or be a prisioner in a care home, people can only be detained if they are actually in prison or have a mental health order detaining them.

You and your Dad need to feel happy that you have the right diagnosis, so perhaps you should go back to the GP and ask for a referral to a memory clinic or consultant to find out properly what the situation is. As you say if your Dad has had a stroke, he may well make considerable improvements that would not occurr if it is one of the forms of dementia.

[Confuzzed]

Thanks for all the great replies, very thought provoking. Think I'll definitely check with CH about his suitability to go out unsupervised. At least in the short term that might help with his mood.

Sue, he was having some trouble with his memory, but went to a memory clinic and was told that it was normal for someone in their 80's. That was in January. Since then, he has found it difficult to manage some things, like buying car tax and cleaning his home, but nothing too terrible. Mind you, as we don't live close by, he may well have been doing a good job of covering things up.

Then he was burgled, and it preyed on his mind. Next thing we knew, he'd collapsed and been taken to hospital, where within the day he was diagnosed with dementia, and not allowed to leave until we found an EMI care home for him.

We found it all a bit sudden, but they said it can happen, that they had done all the right tests for everything else. He was indeed talking gibberish at that point, but we were concerned that they didn't seem interested in what type of dementia he'd suddenly acquired, or in treating it with anything. They just wanted that bed back.

Oh, I don't know, it all seems so confusing. We desperately want to do the right thing by him, but what is the right thing? To fight on for a better diagnosis and possibly get him home again, or accept that he is ill, but find somewhere more suitable for him to live.

I suppose the worst outcome is that he has dementia, but won't accept any type of care.

Can you advise what the next steps might be? The hospital don't want to know, so would his GP be a better starting point, and will he talk to us? We're about to start on the Court of Protection process, what fun that looks to be, but if there's any chance he'll be able to manage his own life again, we wouldn't want to carry on with that

Feel free to tell me I'm dreaming about a recovery, I suppose it's really a long shot, but I can't shake the feeling that we're consigning him to a life of misery and frustration if we don't do something soon.

Thanks again

[ggma]

From what you say, it does seem that your Dad has dementia, but again it helps to know what kind of dementia as it can make a difference.

If your Dad has been having trouble managing his finances, then your application to C of P would not stop him moving home if that was agreed as possible at some future time. A move home would need a lot of support and managing fiannces would be one less worry for you.

There are different types of care home, and if you are worried there is no reason why you should not look at others. Do talk to the Manager or senior staff where you Dad is and let them know how he is feeling, they may be able to help or adjust things for him to make his stay better.

The GP is usually the starting point for any medical concerns, and I think if you explain why you want to talk, they should see you, or you could write and ask if they have more information than has so far been disclosed to the family, and explain your concerns.

[zeeeb]

People often improve with consistent care, good meals, good hygiene, regular medications etc. So that's not surprising. If he's been put on medications, it may have stabalised him somewhat, and the good care is probably making him feel like he's better than ever (as my step grandfather always says until he's back at home and feels like rubbish again).

I think to try and consider taking him out of the nursing home and getting him re-assessed, may be a mistake. Especially if he doesn't have family support living close by. When he doesn't have the high level of care, food, hygiene and regular medication that he does now, he'll deteriorate and then it'll be another crisis before he's put back in a care home.

My grandmother in law was similar. She had a crisis, went into a nursing home, and then improved no end because she had never been on any medications (her husband decided that she didn't need them), so when put on medications, she was fit as a fiddle and quite sharp. She used to think and comment regularly that all these people were a bunch of loonies etc. But she needed to be there, she couldn't care for herself, her husband could no longer care for her because of his own health.

It's sad that he can't get out for a walk, but I presume they don't have the resources to go chasing people who decide to try and make a break and head back to their homes etc and get lost.

You're somewhat stuck between a rock and a hard place.

[Chemmy]

Hello confuzzed

Just a thought. If it's an EMI CH then the staff will be very experienced in dealing with dementia, much more so than hospital professionals. What do they think?

I only ask that because there have been several younger people in Mum's CH over the years who don't seems as though they should be there as you can have a perfectly sensible conversation with them etc.

But ask the staff and they assure me that there are less obvious reasons why they need to be there.

From your story, I would also be questioning whether an ordinary residential home might be a better facility than a locked EMI unit.

[supporter1]

Just read your thread and thought , know that feeling and dilemma !

My Dad is desperate to wander, he is currently in an NHS secure ward for assessment and has made great efforts to get out ( would have been a good candidate for the great escape) which culminated in him taking a door apart and leaving , he managed to catch 2 buses to get back to the old house before the police came to take him back to the ward . The Psych is of the opinion that my father is high functioning and that is why is is reacting this way. Sadly he has no short term memory and gets very disorientated and distressed.

Anyway, we are now going through the processes of trying to find the right sort of care for him. The wandering part is going to be a big issue I think for a variety of reasons just as you have found.

I do think that a structured supported living situation can really make a difference and from what you have said it is doing what it said on the tin ! and your dad is doing well.

Your father sounds like he has rallied , perhaps he experienced an episode of delerium and that is now clearing leaving the alzheimers which is not too bad at the moment ?

As I have no solutions I would just like to say from one troubled family member to another , hope you find a solution that works