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Can people with dementia live alone at home? - Page 5 - Carers UK Forum

Can people with dementia live alone at home?

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119 posts
This thread is really helping me...............isn't it rather sad that we have to look at others in the same situation or even worse than our pretty dire one to gain even just a modicum of peace. The antibiotics for Mums UTI appear to have taken away the anxiety and aggression from Mum so things are back to what we consider normal. Yesterday was better even though I had a full blown conversation with my Mum about the mess Dad got into during the night (poor soul has been gone since July last year). I find myself talking to her on her level and then on my journey home wonder if perhaps I too am just that little bit nutty LOL.
I take on board you comments Jenny about withdrawing some of my help but unfortunately like most on here (yourself included I'm sure) I have to take my own head home and then I just can't let go of the fact that I have left her entirely on her own. I had a similar situation with Dad. mostly due to Mums dementia more than him , but I had the peace of mind that one of the four care calls would at least alert me of a potential problem. Doc asked Mum on Friday if she would consider some nice ladies coming in to give me a break and she looked at me with so much fear in her eyes and then the answer "I DO NOT need strangers to help me I will cope on my own if Jayne is fed up with me" well folks you can all probably guess I replied "Of course I'm not fed up with you I'm tired and weary but I looked after Dad for eleven years and of course I will look after you" - good young Doc said quietly to me on our way out "be careful that reaction is exactly what SS want to see - Mum wanting you and you too guilty to do otherwise they will have another case that will get the funding. Such easy answers but such difficult decisions because at the end of the day whatever decision I make I have to live with as well as Mum. ... great thread for any of us dealing with this dreadful disease of dementia tho' thanks folks xxxxxxxx
A formal mental capacity assessment should be done by a specially nominated person, not by the persons care manager or social worker. After endless problems with M's local team, he was referred for a formal assessment. You shhould be able to ask for a formal assessment under similar circumstances.
I should think it would be 'self-evident' that no one with a vested interest in the decision should be party to whether an individual has, or has not, legal capacity! Since it is clearly in the interests of the SS that the answer is 'yes' then they cannot be involved in providing that answer!

My own very limited personal experience is of talking to my solicitor who'd told me that if she talked to my MIL (eg, over making a new will, or selling her flat), on her own, without me being present, and from that conversation with her client (my MIL) had concern that the client might not be fully comprehending what she was talking about (eg, 'Who do you want to leave your money to? Do you want to sell your flat?' etc), then she would have to refer the client to a medical doctor, to have the doctor assess the client's comprehension, and base any further interaction with the client on the doctor's report. ie, if the doctor said 'this person can't fully understand what is being asked of her' then the solicitor cannot act for her as she would for a client with full legal capacity.

However, before going down any route of assessing legal capacity, I would strongly recommend understanding the consequences of a decision that an individual does not possess legal capacity any more. Does that mean, for example, they then need a guardian of some kind to represent their intersts - eg, a lawyer, and how would that be paid for (out of the individual's estate?). Would a relative-carer obtain the guardianship (not entirely sure what the Office of the Public Guardian does, but presumably they are involved?). Natural instinct might make one wary of becoming a legal guardian of a very dependent individual, asthat would have implications for future care - you could not, possibly, then 'abandon' that individual if your life circumstances change (eg, if you became ill yourself!), you might even become liable for culpable negligence/manslaughter, if that individual came to harm.

It's also, possibly, again from what very, very little I've looked up, not a simply binary question 'capacity or not capacity' if I've understand the following link correctly, which seems to include the phrase about the ability to make "SOME decisions".....

http://www.mentalhealth.org.uk/help-inf ... -act-2005/

The article seems to be written from the POV of the mentally ill, rather than their carers (which perhaps is a good idea then for us to read, to help us see it from the caree's point of view?!)
JH, glad things are a little less difficult now your mum is on AB. It really sounds like the new GP is 'on side' with you, which is great!

Do you have any idea just why your mum is so set against having anyone else in to look after her? Is it because she doesn't want a change in routine, or has never liked 'strangers in the house' or because she fears it's the thin end of the wedge and will 'end up' with her in a care home or you never coming to see her?

I wonder whether the following might be a possible strategy to approach the difficult dilemma?

What about if (if you can afford it!), hiring a private carer (ideally, the same agency as the SS would use), to come along WHILE YOU ARE WITH YOUR MUM. If you were there as well, and this outside carer just came along to 'give you a hand', and your mum started to get to know her, and recognise her, and feel familiar with her, etc etc, then it might become possibly for YOU to 'edge away' little by little, while the outside carer lady was there. You could say 'I'm just going to sort out the kitchen, Mum, while xx stays with you, I'm only in the next room' and keep popping in and out, and then little by little, ease away, even saying 'I'm going to sort out the garden' or 'post a letter down the road' or whatever is appropriate. Maybe you could leave a little earlier than the carer, or arrive a little later, until (hopefully!) the time comes when the outside carer is suffiently familiar to your mum, for your mum not to see her as a stranger, but as part of her routine.

I'm assuming, even if you think that might work, that you would have to pay privately if you were there simultaneously with the carer, but that once 'established' you could be absent, and the carer would be paid by SS?? Unless, possibly, you simply book the carer via SS and then 'turn up' yourself to oversee the gradual 'handover' to the carer?
Well folks a lot has happened since my last posting. Mum finished her course of antibiotics and returned to what we consider normal, still confused but cope able. However, my dear cousin takes my Mum out for a drive every other Saturday just for an hour and she unfortunately fell down the steps to his house. She banged the back of heads and nicked an artery which needed 8 stitches and the blood loss resulted in a two day stay in hospital. They went from being really helpful to in one nurse' case downright rude. They were initially concerned that she had an irregular heartbeat, then their concern was her coming home with her confusion as bad as it was and then they involved Social Services who quickly latched onto the fact that I was around and they could send her home and get her off the books, so her irregular heartbeat and terrible confusion somehow became healed immediately. She came home bank holiday Monday and she was in a real state, I thought at first she may have had a stroke but they assured me she hadn't. I have always vowed I will not live there but I really couldn't leave her in the state she was in so I kipped on the sofa, good job I did she couldn't even manage the stairs. Since then she has picked up no end and I have been able to return to sleeping back home. I am absolutely shattered both mentally and physically. I have spoken with several "powers!!!" about the ongoing situation and frankly am appalled at the response. I truly do NOT want my Mum to go into residential care and will cope with her at home for as long as I can but the response from the Social team has been along the lines "well of course you don't want her to go into a home because you have to consider the value of the property which we assume will come to you, but you do realise it is classed as an asset and will be taken into account" - Well of course I DO and I ended up ranting at them which I don't think as helped at all - I firstly tried to explain that 11 years ago I gave up a job of £30K per year to help Mum look after my Dad post stroke and received a wage of somewhere around £1.29 per hour for the privilege of doing so. This resulted in us having to extend our mortgage term in order that we could continue the payment on one salary and indeed on occasions have helped Mum and Dad out when their savings ran out and if I won £5m on the national lottery it would not alter the fact that I want to contribute (but didn't expect to have to take over) in looking after Mum and would indeed play an active part. It is becoming increasingly obvious that any one who cares for their loved ones out of love not financial gain is tarred with this mercenary brush. I am fully aware that the proceeds of Mum & Dads home will eventually have to pay for her care because as I get older this "JOB (Just Over Broke)" becomes more and more difficult. The "powers" are very incorrectly assuming I do this for a huge chunk of dosh at the end of it all - my Mum and Dads home is a two bedroomed ex authority house and I would have earned far more than its value over the last 11 years - we have an appointment with her GP this morning and I afraid the poor man is going to get the lot I am so incensed - sorry folks Rant over - i will let you know the outcome I must pull myself together because yet again I have dissolved into tears as I read this posting back - we as carers are nothing more than used and abused for loving the folk we care for xxxxxx
I just wanted to send (((hugs))), JHR57, as I know exactly what you are going through. Your situation is not that dissimilar to my own, although I am lucky enough to still be working.

My mum has always said that she never wanted to be "sent away" to a care home etc and I have done my level best to keep her at home but at what cost? After many tears and much argument, mum is just finishing off her second week in respite at a care home near me. The difference is remarkable. When I am there, she says she is doing nothing, eating nothing etc. I am told by the carers that she is participating in group activities quite happily (something she has never done in her life), laughing and joking, and indeed eating and drinking. She is even drinking tea which she has not done for about 15 years. The home is not perfect, I think there are better (it was the only one with respite available) but the difference in mum in 2 weeks is remarkable. I admit the dementia seems worse yet she is contented?

I am dreading her returning home on Sunday to an empty house and then I am on full alert again, running two houses, bathing her, sorting out carers, jumping every time the phone rings etc etc.
Frankly, I would love her to go into a care home so that I could have some sort of life back but she refuses, much to the delight of Social Services who claim it is unnecessary. Apparently she can cope at home (with my 50 hrs a week help). I know it seems selfish but our mums have had their (long) lives. Is it unreasonable for us to want one too?

I am rambling but what I wanted to say is that don't necessarily think that your mum would be unhappy in a care home. She may surprise you .... Good luck at the GPs
Anne, why don't you arrange another Carers Assessment and tell them how you feel. Mum is clearly happy at the home. In the meantime, arrange a regular respite break for you.
JHR, I think you should make a formal complaint to the hospital. Ask them for a copy of their Continuing Healthcare Assessment. This should be done routinely (whatever they say) and you should have been involved too. It's NOT up to them to decide eligibility, it IS up to them to do the assessment. Mention in your complaint her inability to climb stairs, this again should have been part of her assessment. She should not have been discharged until they knew that she would be SAFE at home, and clearly she wasn't. As for Social Services response, awful. Did they assess mum properly before discharge as her situation had changed? Did they arrange an updated care package? Did they ensure she was going to be safe? I suspect I know the answer to all of these questions, but that is what they are supposed to do.
JHR - I know it's hard (impossible?!) but do try to TOTALLY IGNORE what SS say or imply or infer or criticise you for! They can, to be blunt, take a hike!

Anne - so pleased to hear you got some respite care. Your mum's reaction has echoes for me. Whenever I visit my MIL, especially if it's been a two day gap not a one day one, she all but falls on my shoulder and says 'Oh, Thank God You're Here! It's awful!'........yet I know from my BIL that when he visited her during his stay with us this last month he found her cheerful and participating in the (albeit somewhat limited) activities, and she didn't seem fussed or distressed at all.

I do think, quite genuinely, it's like toddlers. They can be playing happily in a playgroup, nursery, or wherever, but when you walk in, then instantly it's howls of 'Mummy, Mummy!' and tears and clinging.....

It's hard, I know, but I think we HAVE to fully take on board that the behaviour they show us, their primary carers and 'saviours and protectors' (!) is NOT totally 'genuine' - it IS, sadly, a way of not precisely 'controlling' us, but of checking that they have the ability to get us to look after them as they fear we will not if they don't act 'clingy and dependent'.

Now that your mother has had some respite care, is it possibly to start scheduling it in routinely, however much you can afford perhaps, and once it is established that 'this is the week you go to that 'hotel', Mum' then it will become part of her normality.

Perhaps it might even become possible for the 'respite' to segue into 'full time' - especially if it then becomes a case of 'not disrupting' her stays there if she is so clearly content (at least when you are not around!)

All the very best with it - I hesitate to say this, but I cannot but agree that yes, they have enjoyed long, long lives, and for us, we still have 'some' time ahead of us. Ironically, when we are younger, we may not mind 'putting off' our 'me time' because we feel we have a lot, lot, lot of our own lives left, but now, at 60 myself, I know that I do NOT have decades of active enjoyable life yet, so it's more important to me than ever NOT to use them up totally on caring for a 90 year old (who wasn't herself caring for a 90 year old when SHE was my age!). We want them to be happy, content, well looked after - but not if it means dedicating our entire lives to that. We have to measure up what we can 'afford' to give them of ourselves. Anything more is unfair.
Social Services who quickly latched onto the fact that I was around and they could send her home and get her off the books
I am dreading her returning home on Sunday to an empty house and then I am on full alert again, running two houses, bathing her, sorting out carers, jumping every time the phone rings etc etc.
Frankly, I would love her to go into a care home so that I could have some sort of life back but she refuses, much to the delight of Social Services who claim it is unnecessary. Apparently she can cope at home (with my 50 hrs a week help). I know it seems selfish but our mums have had their (long) lives. Is it unreasonable for us to want one too?
and what happens if you should become too ill to care ?

It really shouldn't be up to Social Services whether or not someone goes into a care home - that is a decision that should only be taken by the family in conjunction with a Doctor. I can understand SS's involvement when there needs to be a discussion regarding financing such a move, but if the move can be/is being privately funded then they have no need to be involved at all. Who do they think they are using moral blackmail and 'guilt' to make us jump through their hoops ?
Thank you for your responses my friends............ I took Mum to see the new GP this morning and I have to say I was most impressed with his "bedside manner" only a young strip of a thing but Mum was really happy with him and seemed totally relaxed.... GP voiced exactly the same as yourself Susie and has assured me that although his hands are somewhat tied after a certain level he can at least log everything and make sure the formal complaints are properly logged for Future "battles" (his words not mine) with Social Services. He explained all about the money situation and of the fact that Social Services are totally dependant on folk like us to alleviate the pressure on them to provide care. I said it's a great pity they can't be honest and admit that fact instead of taking the emotional blackmailing route to make us feel even more guilty (?? why I'll never know but I still do) than we already do. He made a phone call to the discharge team to ask why this lady has been discharged, how they expected her to cope alone when she had had a huge trauma to the head and was taking the highest dosage of anti biotic that they could have prescribed which would make her even more disorientated than the dementia alone and why none of the diagnosis was explained to her Daughter who clearly had to cope with situation at home with no medical knowledge other than what she has picked up in the 11 years she has been saving our employers money. The said they would get back to him.... just had a call back from him to say they simply can't make an apology because they were operating on agency staff as it was bank holiday weekend and that the physio's had ticked the box to say Mum had walked up and down the stair case at the hospital unaided and very safely. They also said they do not keep dementia patients in hospital simply because they cannot tolerate high dosage antibiotic. It really is just appalling but as the Doc says I guess we should just move on and put it down to experience, told me if it happens again to simply say I cannot come to fetch her , cannot stay in her home so if you discharge her you must get her home and ensure she is safe. I just rolled my eyes could anyone else do the same I think NOT but apparently it really is the only way to make SS wake up and smell the coffee. Problem I have is this is not a piece of meat I am dealing with it is my Mother, I love her, hate the situation we are all faced with and simply could not see any harm come to her if I could possibly avoid it. Her stitches have to come out on Monday so whilst the nurse is dealing with that I have an appointment in Mums name to go through everything with this lovely GP, he isn't promising miracles but made it quite clear that he, even if no else in the practice can help, will support me as much as he can. Also added that he was Aunty reared and his Aunty was in exactly the same situation as my Mum and he too had to fight for every bit of help she had. I rest my case in that only folk that have been through this awful situation could possibly know what it is like - the likes of Mr Cameron and his cronies haven't got a clue. SO SO SORRY for the rant folks but I truly find letting off steam to those in the know helps much more than medication to calm me down. xxxxxxxxxxxxxx
119 posts