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NEW...Caring for mum who has vascular dementia - Carers UK Forum

NEW...Caring for mum who has vascular dementia

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Hi, im caring for my mum who has vascular dementia for a few years now. My dad passed away last year, so I moved into my mums house to care for her, as her chair lift etc was here. My mum is 81, she had a fall in Feb, this year which was quite bad so she spent 5 weeks in a care home for physio, but I find her mobility has went down hill since she came home as she doesn't walk about as much as she used to. She gets up at least 3 times during night, but as her walking is not good she sits in a chair. She had a visit from physio about 3 weeks ago and they suggested that social workers should assess again, which they have done, I have 2 part time jobs and a carer who comes in once a day for personel care for my mum, which doesn't happen as my mum is sleeping when they come in and doesn't want to get washed etc, so I do it all when I come in after my morning job. I asked social work about respite care as I want to have it in place for when things get bad, but cannot see me using it unless I really have to, so that should be in place in January, I was told....I feel that I turn down lots of invites of drinks and meals out etc, as I have no one to look after my mum, she gets more agitated when im not here with her, infact a friend I have known for years has disappeared from my life after been asked to come over for drinks etc, I feel quite let down by people to be honest....no one wants to involve themselves in any way....even for a chat....sorry if I feel negative, maybe its this time of year that's causing it...but I found this web site, and look forward to reading all the posts on here....Caroline
Hi Caroline, it sounds like you may be reaching the end of the road as mum's carer. This might be a good time to think about how mum's future care will be funded. If she goes into residential care, and she owns her own house, you might be asked to sell the house (depending on various things) or else the LA would give an interest free loan, secured on the house. If she has limited savings and lives in rented property, Social Services would pay. Does mum have a will? Are you the sole beneficiary? If so, then your own future financial position might be affected. I don't want you to divulge lots of personal financial information here, that's not really appropriate, but I raise the issue of funding future care so you know what is involved. If you want to keep the house, mum wants you to look after her, and she has significant savings, it might even be better in the long run for you to give up one job, and then mum pay you for the care provide, or you claim Carers Allowance. Alternatively, if mum can afford it, employ outside carers. The Carers UK helpline will be able to give you further information.
Hi Caroline and welcome to the forum,

You are not alone in your experiences. A lot of carers find non-carers fail to understand what caring is like/ entails. Some friends get lost along the way and as our opportunities to socialise diminish, we feel lonely. I agree that these feelings are often intensified at this time of the year.

If the care visits are not suiting your Mum, time wise, then I think it is worth contacting the care provider and requesting a more suitable time frame.

As for her walking, it is a case of if she doesn't use it, she'll lose it. This is a challenge. Can more movement be part of her daily routine, eg she could walk to the kitchen and sit on a chair in there for a cup of tea whilst you cook dinner or whatever ... it's a case of working movement breaks into the day.

Whilst seconding Bowling Bun's post, I thought I would raise a couple of extra points. If your mum has dementia, do you have Power of Attorney for her finances and is that all sorted since your father died (if he had PoA himself)? You shouldn't be paying all the household expenses yourself, eg, food, electricity etc - at the least your mum should be paying half (and really, as BB says, since you are doing so much for her, I'd say she should be paying all the expenses!) (This will be significant if you go down the route of her living in a Care Home, as there is no point 'saving her money' by using your own on paying her bills, since social services will want her to pay for her own care, until she has only around £23k, left in savings and assets/property, before they will step in. If you use your own money now to pay for bills etc, the only beneficiaries are SS - you're just saving them money!

My other thought was this - you may be thinking 'but I don't want Mum in a care home, I should look after her myself' - and this is very, very praiseworthy. But.....this is your life too, and at the moment you are really not getting much of (any of?) a life yourself. Caring for someone, let alone with dementia, is utterly exhausting and time consuming, and is unlikely to get better - please don't sacrifice your own life, however much you love your mum. Moreover, as her dementia gets worse, it will get more and more difficult to look after her, and one of the things about Care Homes is that they know how to deal with patients with dementia.

Another consideration is that if she owns her own house, you may be thinking 'I don't want to sell the house to pay for her care, I'd rather look after her myself'. Again, this is absolutely understandable, and it's a decision that some people here have taken themselves, and I'm sure they can comment on it from their experience, as it has 'pros and cons' (as do all decisions of course.) BUT, and this is my point - do, do, do please get some expert medical opinion on just how long your mother's life expectancy is. 81 is really not that old any more - my own MIL is 90 (and physically very fit, though mentally frail - she is in a home) (and she could last another ten years) - so although you may (just!) be able to cope with caring for her now, think seriously about whether you could still be doing so in five, ten, maybe even longer......

Yes, you may end up having her house to inherit, by saving on care home fees....but you will have earned it at the price of precious, precious years of your life......

Finally I know I am not alone in discovering that once an elderly relative has moved into a care home, one's relationship with them can actually improve. This is because all the 'day to day' care is being done by the home, and that means that the time you spend with them, visiting or taking them out, is actually 'quality time'. And because you are not so stressed and exhausted, you enjoy being with them more.

I do wish you well. It's intensely sad when someone we love becomes so physically and mentally frail, but, as I say, you, too, have to take care of yourself - your life is also precious.

Kind regards, Jenny.
Hi Caroline,

And welcome to the Forum, a great place for advice, chat or just somewhere to vent :D .

I could have written your post myself six months ago as my mum who is 87 has vascular dementia / Alzheimers plus mobility problems. And yes, friends do not really understand what our world is like or why we are turning invitations down.

Everybody's case is different and we all have different limits. I personally did not want to give my job up as it was my lifeline to the outside world (ironically I have since been made redundant) and practically speaking, I was also worried about the financial impact. However, I found that as mum's dementia got worse, I was being called away from work almost on a daily basis. Being woken up several times a night and then going into work also took its toll.

I can only suggest, in no particular order:

- finances. As mentioned above. Do you have Power of Attorney? Depends how far advanced your mum's dementia is but worth getting if possible. Do you know what money mum has and what benefits she can get? For example, mum got Attendance Allowance (non means-tested) which enabled me to pay for dementia sitters once a week. Does mum own her own home? If so, what is your legal position if mum had to go into a home? Carers UK adviceline can give you confidential advice on all of the above.

- support for mum. Insist on a revised care assessment and additional care visits (mum had 4x daily which I think is the maximum). Is there a branch of Alzheimers (for all forms of dementia, not just Alzheimers) or Age UK near you? Or Crossroads which also supplies sitters for those with dementia. This is not just for mum but for you too. If you are to continue to care for mum, it is essential that you get breaks.

- support for you. Is there anyone who could stay with mum for a few hours? Or could you pay someone to do so? My mum was very reluctant but it became essential once I started struggling.

Also, hopefully this will not happen to you, but my mum ended up in hospital with infection / dehydration / falls etc and I was told she required nursing care. Fortunately, I had already visited about 10 care homes so I had some idea of where I wanted her to go. It would probably be a good idea if you visited some as well. Maybe you will never need them but, like a boy scout, it is good to be prepared.

Finally, sorry for the length of this missive but this has become my specialist Mastermind subject :roll: . If you have any questions, just holler away. Anne x
People with "severe mental impairment" are exempt from Council Tax. Ask your local authority for details of how to claim exemption.
Hello everyone, and thanks so much for all your kind replies, especially as its a busy time of year. T o answer a few questions, I was told it was to late for me to get power of attorney, for my mum, as she had dementia for a while beforehand. My mums mobility problems not getting any better as she refuses to get up and walk around , ive told her it would help with her walking if she keeps active, but she seems to think shes walking around everyday and I don't see her....so I cant win....she says she does all the housework and I do nothing....grrrrr, she can be very stubborn and wont go to bed at night even when it gets very late, she tells me she can go herself and to leave her alone, so social worker is getting in a carer at night to get her to bed ...so that should be interesting. I will wait till later this month to see what social care will do about respite....although I know I wont use it unless im at my wits end....although I have 2 part time jobs, I did think of giving up afternoon one, but to be honest I think it keeps me going , as I can chat to other people, and makes me feel I have a normal life.
Caroline, hi - I think Anne has raised an excellent point (well, all her points were excellent!), which is to start checking out your local care homes. Even if you decide you can, with extra third party carers coming in, still continue to cope with having your mum with you, if you have started to check out care homes, and have a few possible ones lined up (checking fees, vacancies, having visited them etc) then, when and as and if the time comes for your mum to need residential care, you will not be starting from scratch on the care home front.

Another thing to consider is this - just because someone goes into a care home does not mean they can never ever be 'let out' for visits home again! My MIL is in a Home, and she comes to stay with me usually once a week, on Sunday nights, and I take her back for lunch the next day. She's been 'out' for Christmas for a few days, and again for New Year last night, and I think it works very well. Because I only have her with me once a week, on that night I can cope pretty well (usually!), and she is cossetted and fussed over and is 'at home with me' (as she would love to be 'always', alas, but can't ,because I'd go insane!), and then, once she is back at the home again, I get my own life back.

Something similar may work for you and your mother perhaps - that she comes out to you on regular visits and overnighters, and so the stress is taken off you (I can't tell you the relief I feel knowing that, like right now, she is 'somewhere else' and that 'other people' are there on duty to look after her!), so that the time you are together is far more relaxed and enjoyable.

One thing however is for sure, you CANNOT live 'at your wits end' indefinitely. Something has to change....

Kind regards, Jenny
Hi Caroline
My mum has Alzheimers rather than vascular dementia, but I could have written every word :roll: I did not live with her and she is now, unfortunately, in a care home, but before then I was tearing my hair out. When Social Services contacted her (by phone!) she told them that she did all her own housework, shopping and cooking and no-one had to help her at all. In reality she was doing none of these these things and was not eating, or washing, or going out at all :o

The trouble with dementia is that they really do think that they are still doing things and there is no problem, because they have forgotten that they cant (and arnt) do them. Loss of mobility is part of dementia and it is no use telling her to do things, because she will forget. It also wont work if you try to arrange things so that she has to walk to do things, because she just wont do them (and will then forget that she hasnt). The most you can do is encourage her to walk with you while you are there.

If it is too late for Power of Attorney - as it was for my mum - then you will need to go for Court of Protection. I would start soon as it is a whole load of hassle and takes a long time - I started the procedure 8 months ago and still do not have it.

Find out as much as you can about dementia - The Alzheimers Society deals with all types of dementia, not just Alzheimers, and offers a lot of advice and support.
Hi Caroline,
My mother also has vascular dementia following a brain haemorhage. She is only 75 - she had the brain haemorhage 3 years ago.
She does have a full care package which means 4 visits a day. At first I was living with her but moved out after a few months . I am married and live about a mile away from my mother. My mother also refuses to help herself in many ways - I now believe though she believes she is onthe road to recovery and will soon be back to normal. I have to go into hospital onthe 13th for major surgery and my mother insists she will drive herself to town. It's all very sad and very difficult. Plus as my mother is so young, I have had to take a back seat or give up my own life. The carers make sure she is fed, warm and safe but any quality of life is down to me and my sister. My sister however has very young children and 2 jobs. I am 'retired' so inthe main it's all down to me ( medically retired from a job I loved ) .
Sorry I can't add anything positive. Our situation is ok now but with me having surgery all that could change. If she goes into a home she will lose her modest little house - she has made a will and has split everything between 5 ( another story). I do have power of Attourney but most of her bills are on direct debit and I just cash her pension which she keeps inher tin - she is happy with that - gets very confused about money.
I find shopping a challenge - every week she insists in buying a massive french stick! Don't ask me why - she never eats it . So if you ever see a frazzled woman tryng to manoeuvre a wheelchair with 14 stone woman in, plus french stick - it's me!!
Keep posting - it helps to share experiences xx