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Can people with dementia live alone at home? - Page 3 - Carers UK Forum

Can people with dementia live alone at home?

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119 posts
Anne001 wrote:By the way, do not be fooled by the fact that accommodation has care buttons to summon help. Mum too has a careline which she forgets to wear / forgets to push. As the dementia takes grip, it is entirely useless.
Good point Anne. Same situation with stairlifts, because unless they are installed prior to dementia taking hold, often an elderly person can't cope with operating the controls and will actually stumble past the stairlift and struggle with the stairs, unless someone is there to operate it for them. That was a big part of the reason why I moved Dad into a care home last year, because he had started having frequent falls, including one bad one on the stairs. A A stairlift would cost about £5k (awkward stairs in three sections) and he'd need carers there 24/7 as well, so it wasn't a good solution.

BB - good point about the finances, however, I discovered a while back that Mum actually owns the house, so the LA would be on dodgy ground if they tried to force her to fund Dad's care from any sale proceeds. To be honest, if Mum said she was ready for a care home and wanted to go that route, the financial implications would not overly worry me. The way I view it, the sale proceeds would fund her care for years and if the money ran out then the LA would have to fund her place, because by then she would be settled there and a move to another home could be detrimental to her health, so against guidelines. If Mum ends up in a home there is the matter of losing inheritance but I can't be upset about the loss of something that was never mine and I didn't work for. That said, I do feel sympathy for people who care full time for their elderly parents for years, keeping them in their own homes for as long as possible, then end up inheriting nothing because the parent eventually goes into a care home anyway. That must be a bitter pill to swallow, after years of stress and worry... in situations like that, it seems to me that those carers deserve some compensation for putting their lives on hold for years, to the detriment of their own health and happiness.

Sorry, going off topic. Mum will resist any change right now, but I won't hesitate to get her into a care home if/when she needs 24/7 support, support that I would not be able/willing to provide myself. She will not be neglected due to financial considerations.
SW, in that latter instance, where a son/daughter cares for parents to keep them out of a carehome, then loses the family house to pay for the carehome when it does become necessary, maybe anyone who decides to move into the parental home to care for dependent parents should only do so if the parents gifts a decent percentage of the house to 'pay' them for the care they are undertaking? (eg, every year, the parent could gift another, say 5-10% of the equity in the house to the son/daughter carer)

Not sure if our wonderful State, however, would decide that the gift had been solely for the purpose of avoiding care home fees.......

Personally, I would think it perfectly 'moral' for a dependent parent to 'pay' their son/daughter for looking after them, which, after all, they would have to pay for if they were buying in care from the market via external carers.
She-Wolf, I agree with you. I suspect that my mum may end up in a home with her own home funding that for some time. I am resigned to that but I do think it is wrong.

Jenny, what you suggest may indeed be moral but it certainly is illegal. It would be considered deprivation of assets and as such would be seized by Social Services. I'm not saying that is right but it sadly is the reality.
Forgot to add that that is an interesting point re stairlifts, She-Wolf. I wasted a lot of money buying mum one of those all singing-all dancing chairs. She doesn't understand the concept of pressing a button to raise the chair up. It is treated by her like any other chair.
Yes, in the initial stages it is often fine for people with dementia to live at home with support, but as has been already said, the dementia progresses and they are able to do less and less.
My mum has Alzheimer's and, until recently, lived alone at home. She has now gone into a home as she requires 24/7 care now. She became unable to cook at all, or even work out how to use the electric kettle, so she was unable to make herself a drink and became very dehydrated. She forgot to eat meals and lost a lot of weight, and she now needs someone to constantly remind her to eat and drink. She had quite a few falls and after one in particular she was left for a few hours until someone found her. She has become unable to use the phone, so would be unable to summon any help. The care home she is in has stairs (which she is really struggling to use now and the care workers don't like her using) and a lift which she cannot work out how to use and someone needs to operate it for her. The final straw, though, came when she was struggling put of her home in the wee small hours of the morning in nothing but her nightie and knocking on random neighbours doors because she had forgotten where she was.
She now frequently does not know who I am and does not know where she is. The last time she went to her own bungalow she wanted to know who it belonged to and why had she been taken there? Having said that, she still has lucid days/times when she knows exactly what is happening - but these days are getting fewer and further apart.

What I am trying to say (very badly) is that there comes a time with everyone with dementia when they need round the clock care, either with someone looking after them constantly - and usually needing care workers coming in too - or being on a residential home.

Jenny, be aware that if your mum has dementia then it will only get worse and if she is already struggling where she is she will soon need more care.
Hello everyone - haven't posted for a while - hope you are ok :)
Jenny - hello - mymother has developed vascular dementia following her brain haemorrhage 2 years ago. I have posted on here many times moaning I'm afraid about how I have struggled. I have health problems - need major surgery - younger sister who can't contribute and has 2 very young kids who I look after. Two years on - she is still at home but it is a juggle. She has carers 3 times a day . We ( me my daughter and sister whe possible ) go down evey night between 9 and 930 to give sleeping tab and check ev locked.
Like you Jenny my mother gets very very bored and lives for me offering to take her out. It's wearing as I don't like shopping and can't really manage the wheelchair etc but I do take her twice a week. Every other day she stays in bed. She won't shower but manages some kind of wash down. She can't prepare any food so I buy in all her food and carers prep. I oversee things and provide the frills if you like - the outings, nice food. My mother and I were never close - in fact we never got on - she was cold and undemonstrative to me all my life. Now she is softer and kinder but very very needy. On the days I don't take her out I had arranged other things like physio on a Monday, hairdresser on a Thursday. That way I knew I had a day off in a way as someone else was looking in. She wants to cancel them - she doesn't like the hairdresser and finds physio too hard. She reduced me to tears over it tbh - these things take some arranging. She has no thought for me and my life. I feel I exist purely to give her a life. She smoked and drank and wouldn't take her blood pressure meds then- wham.
Sorry Jenny - long post. So in my experience despite my mother not being able to do very much at all - she remains at home. Xx
Oh, Worrywort, my MIL seems angelic in comparison! It sounds like you are doing more, more than enough for her, and, my own personal opinion is that if you have organised things for her like the physio and hairdresser, and she doesn't want them, then so be it. You are seeing her every other day, and that really is more than enough. Yes, she may well be bored on the days you don't take her out but, well, life isn't perfect for any of us, is it, so why should it be for your mum either?

I know, as I write this, I have to remember that myself, in respect of my own MIL - some days she will, indeed, just have to endure boredom. It isn't our 'fault' that they are no longer capable of amusing and entertaining themselves!

I'm afraid I can't but agree with your comment that they don't think of others any more, only themselves - they have lost the mental ability to do so. It would be like expecting a three year old to thank us for looking after them! Trouble is, we can know that is so, but it's still hard to be on the receiving end of that indifference to what we do for them!

In general, 'neediness' does tend to be bottomless. However much you or I could or would do for them, there would always be yet more they would want. So, as others here have already advised me, and I quite agree, we do have to set our own boundaries as to what we will, and what we will not do, by way of giving up our time and life to such needy people (sad though that conclusion is).

All the very best with coping with your very difficult situation with your mother. At least it does sound like she is being 'nicer' to you these days (even if that is only because she's realised she can't afford to treat you coldly and undemonstratively any more).

Crocus, I don't think you're saying it very badly at all - you've made it very, very vivid and real, the kind of practical problems that will inevitably accrue as time goes by, once any kind of dementia starts to get a grip and develop. It's good that you have been able to get your mum into a home where she can be properly looked after, without you having to do that very high level of looking after.

I do appreciate that the message coming through from all of you is that yes, while it can be possible for someone with dementia to live at home with carers supporting them, it's very individual and as time goes by, will almost inevitably become untenable.

Which rather makes me think that taking my MIL out of the A/f would be a retrogressive step at this stage. If boredom really is her only problem, that's really not too bad, overall, in terms of quality of life for her, considering that all her other care needs are being well met.
You're so right Jenny, about the issue of boredom. There are far worse things in life than boredom and it's not just a problem for elderly people, although as old age and dementia take hold they may lose the ability to entertain themselves, to a large degree. That's the point when carers/visitors take on the role of 'redcoat/entertainment officer', which is something I'm struggling with at the moment.

I like your analogy of comparing elderly parents with dementia to three year olds, as it's so true that both these groups are very wrapped up in their own needs and wants, with very little thought to the needs of others around them. My parents would be shocked if they knew that for every hour I spend with them, I probably spend another 5 worrying about all their health issues and problems. They have no idea how badly they affect my mental health and I often feel that in trying to make their lives happy and healthy I'm forgetting how to enjoy my own life. Which is why I'm posting this in the early hours, when most people are asleep. I can't face going to bed yet, just to turn things over in my mind endlessly. I'm crap at coping with my elderly parents, even though it's only part time for me. God knows how people cope who are living with their elderly parents. It would kill me.
Although I haven't posted for quite a while I still pop on to keep me feeling that I am still on this planet and my friends on here are the only ones who truly know how I feel. I have been really drawn to this thread . We have had a bad week this week, Mums dementia has been aggravated by a UTI and she has been really really nasty mainly to me which I find really difficult to cope with. Doc has given her a course of Anti B's which seem to have helped but she's still very vacant and I fear she may well have taken another step down, but then again that's my problem FEAR I can worry everything far worse than it is and it really is bad enough. Mum still lives alone and refuses point blank to have outside care coming in. I had a long chat with Mums new Doc (Old one who I loved has retired and the new one is a "whipper snapper" Mums words nit mine LOL) and he was lovely wanted to know my history with them both as well as their health concerns (Dad RIP July 2013 and Mum to date), explained that there are so many people with dementia Social Services are really being pushed to the limit and I may find that they will latch on to the point that Mum says she's OK even though she clearly isn't. He reassures me that he will do all that he can to provide me with the support that I need but in reality the government rules sway toward these poor folk staying in their own homes for as long as they possibly can. Lovely whilst things are going well but I still don't think any of these folk Docs or Government officials can possibly have a clue if they haven't walked in our shoes. I don't often use the childlike analogy because we class children as "naughty" because they are learning the boundaries and are making their memories. My Mum has forgotten the boundaries but still has her past memories and this is what makes her, at times scared and in turn quite nasty. Easier for them than us I fear, we take all these problems on board and try to sort them when in reality than can only be lived with, we will never make them better - hope everyone is still relatively OK xxxxxxxx
Dear SW - yes, the endless worrying is extremely wearing. I think the trouble is we take on such, such responsibility, for those who, at this stage in their lives, are abandoning responsibility for themselves. We seem to have this terrible 'obligation' on us to 'make them happy' - I wonder if it's some kind of 'distorted' parental instinct? Just as most of us cannot bear to hear a child crying, and want to rush to make them better, so I think that same urge operates when it comes to our caring roles for the elderly. I know I've said 'harsh things' about my MIL's situation, and even about her herself, but I still hate to see her so miserable. I want her to be happy. Maybe I feel, selfishly, that I want her to be happy so I don't have to worry about her and then I can be free to be happy myself and get on with my own life! Her unhappiness stops me from doing that, so until I can make her happy, I can't be free to be happy myself. If that is so, we have two choices - either make them happy (which entails our sacrifice of time etc etc, which ironically prevents us being happy for that duration!) or we grow, as BB recommends, a thicker skin to block out our responsiveness to their unhappiness. Which is I suppose coming round to what I'd said earlier, that, in my own situation, if they're bored some of the time, well, basically tough....

I do really like your comparison of us as Redcoats! Made me smile...... (and it's most certainly true!!!)

As for worry itself, well, it's twin sister of the equally malign emotion, guilt. Neither worry, not guilt, gets us, or anyone else, anywhere at all, except deeper into the pit. Both are kind of internal frustrations, that go round and round inside our heads, but never engage with the real world in terms of finding solutions to whatever it is we are worrying about, and feeling guilty about. I guess a counsellor might say 'if you can't solve a problem, for whatever reasons that may be, then you must simply stop worrying about it, or feeling guilty at not solving it, because neither worry nor guilt helps, and simply burns you up, just as an engine constantly idling, without being engaged in 'drive' would burn up the engine of our brains eventaully.'

But both worry and guilt become hideous habits that are very, very hard to escape from and control. We know we should, but it's hard to turn off those emotions, 'pointless' though they both are.

All the best to you in your continuing task, and, I must say, it doesn't sound at all as if your crap looking after your parents - it sounds, from everything you've posted, as though you do a huge, huge, huge amount for the both of them, and they are so lucky to have a daughter that is doing all this (even if they take you blissfully for granted!).
119 posts