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Help and advice desperately needed. - Carers UK Forum

Help and advice desperately needed.

Share information, support and advice on all aspects of caring.
I Live with my 83 year old Mum in her own house and have been looking after her for two years now, as a full time carer. I do almost everything for Mum as she can no longer do anything for herself. The only thing I don't provide is personal care, for which we have a carer come in from an agency, every day. Twice a week to give Mum a shower and help her get dressed, and the rest of the week to give Mum a wash in her bedroom, before dressing. Mum has dementia, arthritis, a heart murmur, low blood pressure (causing severe bouts of dizziness at times) . She has some mobility and gets about the house using a walking frame, but can't manage stairs. Recently her physical condition has deteriorated, and she has been sleeping during the day much more than usual. She has also had an ongoing struggle with UTI's that never seem to clear up.

I have power of attorney along with one of my sisters, Julie. Eleven days ago, Julie arranged with my consent for mum to spend 2 weeks in a residential care home. The idea being to help Mum acquaint herself with the place that may become her home in the future, and to give me a short break from the responsibility of mum's welfare.

Within four days Mum was taken ill. She felt very dizzy and weak, and it was determined that she had a UTI and was put on antibiotics. I was given assurances from Julie that Mum was being well looked after, but having visited Mum six times myself over seven days, I have not found this to be the case. Because of Mum's condition she needs to be prompted to drink, and with a UTI this is vitally important. Each time I have visited Mum I found her alone and unattended. Twice with hot drinks left to go cold beside her, and once with a breakfast tray still in her lap at 11 o' clock. Mum's ankles and feet are also swollen as they are not ensuring she keeps them raised when necessary, as I do at home. When Mum needs the toilet she is left waiting, five minutes on one occasion. I also found her call button left out of sight and reach on one visit. Julie was told that Mum is checked on every couple of hours. It is my opinion that Mum is not getting the care she requires, as this is a residential care home and not a nursing home.

Within a week of mum being there, Julie informed me that she wants Mum to stay in the care home and not return to her own home. This was completely unexpected and came as a great shock to me. Julie has since convinced two more of my sister's that Mum should not return home. Only my 4th sister, Tricia, wants Mum back home and not committed to a care home.

I feel under great pressure to agree with my sisters, because the care home have said that the room Mum is in could be hers permanently, but we have to agree quickly as they say the room may not be available in the future. I feel I could continue to take care of Mum, with the correct care package in place, but my sisters are not interested in this option. I really don't know what to do.
Also, I'm now faced with the prospect of becoming homeless and I have less than £1,200 in savings, which is very worrying. I would greatly appreciate any advice or information you may have, regarding re-housing carers who have no assets.

Thank you very much.
Hi Phill
A couple of thoughts for you
1. NO home no matter how good ever provides the very personal and loving care that family members do. However most do provide 'good enough care' and it takes a few weeks for them to get to know Mum and her needs, and for her to get to know them
2. As dementia advances, the care it needs advances too and often requires more care than can be provided for at home
3. Is the Home an EMI home (elderly mentally infirm). If it isn't it is likely Mum would need to be moved again as the dementia advances.
4. Is the Home close enough that you can pop in daily? It isn't a prison and you should be able to visit whenever you like and for as long as you like.

I think you need to talk to Julie and your other sisters as to what they think your situation will be. Are they aware Mums care could easily cost £1000 a week or more, and could go on for decades yet? Once any cash or savings she has have been spent then the Home would normally xpect her house to be sold (but do check what your rights are )

In any case I suggest you contact Shelter to see what your rights are

No matter what happens, remind yourself you are a loving and caring son and nothing will take those attributes away from you

What does mum want? Maybe you should ask Social Services to arrange and independent advocate? It could be considered Deprivation of Liberty.
Can I ask who owns the house? Do you sisters think they can sell up and split the proceeds if mum goes into the home?!
Thank you for your replies and advice. To answer your question, Mum owns the house.
I've been reading up on possible care options, and it's my opinion that residential care would not be enough, and that Mum may require nursing care, which could be either in a nursing home, or preferably in her own home. There is also more financial help available this way, if Mum were to be eligible.
Hi Phil
Sorry only just read your post. It is important you stand up for your rights. If you are resident with mum , it is my understanding that the Local Authority can't force a sale of the property until after Mum has passed away under a deferred payment agreement.
I live and care for Dad with dementia and my advice would be not to let your sisters (presumeably not resident with you and mum) call any of the shots. they are not the principal carer (I presume) and it is not their home!!!!!!
They may well have steam rollered mum into saying she likes the home but don't let them put pressure on her.
The home are bound to put pressure on saying the bed won't be available soon- they want the contract signed and sealed and are seeing £ signs rolling in front of their eyes.
There are many types of help available to keep mum at home. Sitting service, befriending, respite breaks, specialist equipment, ways of dealing with incontinence.
There are other things to weigh up- how many years could you potentially have to care for mum ? (sisters have already given up- care home is an easy option to ease their conscience) , Are you managing okish at the moment and if not what do you need? Are you claiming everything you are entitled to? Attendance Allowance for mum, Carers Allowance for you, CTAX discount 50%- 25% for mum as SMI and 25% for you as carer?
Are you paying yourself for the care you provide? or are all your sisters all going to have their share for doing nothing? (not very good at that bit myself- the guilt mosnster strikes in strange ways)
What do you want? Presumeably if you were planning on mum coming home after 2 weeks respite you were ok with that?
Be very careful what you comit to signing at the care home and stand up for what YOU want as principal carer.
Cntd I suggest that you take mum back home and start paying yourself the money that siblings are so willing to pay over to the care home every week (perhaps less what you pay the outside carer for a morning visit) .
Yes, I think the MAIN question is - why do your sisters want your mum in a home? Is it genuine concern for YOU, or just that they want to sell her house and get their hands on her money (and make you homeless in the process!)

Do NOT sign anything, and, if I were you, I'd maybe change the locks on your mum's house right now, so your sisters can't get in without YOUR say so.

Don't be railroaded into anything at all.

Importantly, STAY PUT in the house. Do not leave 'voluntarily'!!!!!

All the best to you.

And remember, this is not the only care home in the world - others are available, and may well be better IF you decide that you don't want to look after your mum yourself any more.
Thank you for your support Jenny. I saw Mum today and she told me she would prefer to come back home. She said she was concerned that I might not be able to manage, which sounds like Julie is putting negative ideas into her head. I'm waiting to hear back from Social Services and Citizen's Advice, before I do anything further.
Hi Phill, that sounds good. Once the dust has settled, you need to think about your housing in future. Perhaps mum could give you the right to live there for the rest of your life, or give you a làrger share of her house in recognition of all the help you give. My mum did tis. Initially she left equal shares to all three children. Later she changed it so I go half, and my brothers, a quarter each.
Glad you are a bit easier about the situation. I do think, though, that it is time for a Big Talk, first of all with your mum, and then with the rest of your family altogether, since it sounds like there are differences of opinion amongst you all, eg, you and your younger sister versus the two others??

Plus, of course, what your mum would prefer IF it doesn't cause too much stress to you, her main hands-on-carer.

All that said, I think you do all have to discuss money, alas, as well as 'where does mum want to live' (and any implications for you).

Bascially, if someone owns their own house (or has savings), then the decision that has to be made right from the off is:

- do we (as a family) want to try and preserve the house for the next generation (however it is apportioned) by keeping 'care in the family'


- are we willing to see what could become the entire value of the house go on care homes.

I think the worst case scenario is saying the first, and then ending up with the second! That way someone (in this case probably you) has 'given up' what could be years of your life to care for your mum, and then, if things worsen and she NEEDS residential care, you STILL have to 'lose the house' (or a lot of its value - remember, allow at least £100 a day for residential care I would say.....)(That's £36,500 a year!!!!!!)

I also think as BB says there is a VITAL principle to apply. IF YOU LOOK AFTER YOUR MUM then EITHER she 'pays' you NOW for that care, OR she makes a will NOW that leaves you a MUCH bigger share of the house for after her death (and that latter is dependent of course on her not needing residential care later on.)

I know your mum is 83, but my MIL is now 93, and it was only at 89 that she developed dementia and then NEEDED residential care....her flat was sold, and she is now spending her way through it. Unless she dies before Xmas I'd say then in a year or two it will be ALL GONE......so you must factor that possible situation into your own family too, alas.

It's a grim business, but sorting it out now is timely and sensible. There are no easy answers - and no cheap ones!

PS if the sisters who are keen on a care home now think they can 'help themselves' to her house (ie, she could 'give it to them'.....!) they can forget it. The council will INSIST it is sold to pay for her care, whether now, or, if you continue to live in it alone, once she has finally died. You CANNOT 'give away' your house to evade care home fees - the council come after you with all their legal clout, and get the money off your mum, and those she gives her property/savings too! Tell your sisters that!