1. JoJo2821

    JoJo2821 Registered User

    May 20, 2018
    42
    Hi
    My mum has Alzheimers and epilepsy... recently she has had 2 epileptic seizures. These have had a serious effect on her mobility and cognition, speeding up her decline. She is currently in hospital and we have been waiting for the social services to come up with a care package that will meet the new care needs of our mum but they seem to be failing to recognise the seriousness of her decline.

    Before this decline mum was living in her own flat and receiving care visits 3 times a day, each visit lasting 2 - 3 hours. Mum needs help with washing, dressing, preparing food, shopping, house work. Her mobility is very poor, she needs to use a zimmer frame in her flat, she cannot leave the flat on her own as it is up 2 flights of stairs, she is continent but needs help using the toilet, outside the flat she uses a wheel chair.

    My family and I believe she needs to move to a residential care home. She is too isolated and reliant on carers for everything, her quality of life is so poor, she sits in a chair all day too scared to go down the stairs for fear of falling. She no longer enjoys the television, radio or books as her understanding of these things has disappeared Her only joy is when her family visits, which we try to do every day. I'd like her to have activities and company plus someone on hand to help her avoid falling so frequently.

    She has no money or assets. How can I get the council to contribute to the cost of a care home? At present they are only suggesting sheltered accommodation but that won't improve her wellbeing that much, she will still be isolated.
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,898
    N Ireland
  3. sah

    sah Registered User

    Apr 20, 2009
    332
    Dorset
    There are people on here who know much more than I do-but have you had a 'best interests' meeting? Remind social services that she is a vulnerable adult and they are responsible for ensuring her care is suitable/safe. Keep notes-every little thing you notice -to support your case. It also really helps if her GP is on your side...can you arrange to see him/her? If sh'es still in hospital-the elderly care consultant may be useful as well?
    The Human Rights Act is always worth a look at as well.....Good Luck!
     
  4. JoJo2821

    JoJo2821 Registered User

    May 20, 2018
    42
    :)
    Thank you - these look very helpful.
     
  5. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,761
    Salford
    I'm surprised that if she's getting even 3x2 hour visits a day so 6 hours at (notionally) £20 per hour seven days a week so about £840 per week (from what you say) presumably currently paid for by Social services that they aren't pushing for a care home, as that might be a cheaper option for them.
    If your mum has assets under £14k then the SS pay all the care home funding, although she will lose any benefits she gets and only be allowed to keep £23pw of her state pension and (if she has no partner) will lose all of any private pensions and any other incomes.
    The family visiting everyday may be taken as a part of her care package so volunteering family help may mean the SS will try to cobble a package of care using the family, if it's not going to work then decline to get roped into a part of her care, even if you're actually willing.
    As sah says there should be a "best interest meting" which is a multi-disciplinary meeting with the people currently looking after her so; hospital consultants, nurses, social workers and an Independent Mental Capacity Advisor (IMCA) from outside the local SS and NHS.
    The last best interest meeting for my wife was about 8 of them and me, the first one was only 5 of them and me, it wasn't in any way "them and me" but if a hospital consultant asks a social worker, on the record "do you think that's wise" then the social worker suddenly shuts up.
    Bear in mind that if the LA are funding they only need to find one home that can meet her needs and is within the figure they budget for, it may not be somewhere you like and it can be out of area and they probably will tell you this, if they can find somewhere 20 miles away in budget then don't expect they'll adjust the budget to cover somewhere local to you.
    The LA don't give money away and funding a care home costs a lot of money but if you remind them they're the ones legally responsible for her care and if it goes wrong they the ones who have ailed her, it does make them focus.
    It's an ugly way to sort social care but it is the way it is, so if you and the family fe3el she needs to be in care then push for it, sad it's all come to this.
    K
     
  6. JoJo2821

    JoJo2821 Registered User

    May 20, 2018
    42
    That is so helpful Kevini,

    We are paying for mum's care at present! The only help we get financially is the attendance allowance. My brother owns her flat, she has no savings and gets a monthly income of £1200 ponds from her state income and a small BP pension widows pension.

    Been reading up about needs assessment and as far as I can see there has been no formal assessment of her since this hospitalisation and deterioration. When I asked the social worker (who is a student social) if she needed a new assessment he replied that 'it was sort of happening'. But my understanding is they have to be clear about the process and they need to involve us. They were trying to establish capacity yesterday but he did it in a very underhand way, without my knowledge and waiting for a time when I had to leave the ward. Then told me she 'aced it'. I am annoyed that they are making recommendations without having properly assessed her. The best they have come up with is 4 days care of 4 x 1 hourly visits for which they would give us £200 a month in a direct payment.

    I did ask him if he felt she was safe to left alone then I would be happy to follow his advice and let them install fall monitors etc and she can return home that is when he suggested sheltered accommodation. My problem with that is we would have to go through the trauma of moving her for with only a marginal increase in safety (in Camden wardens are often not on the premises) and no benefit to her isolation, and will inevitably have to move her again in a year or few months time.
     
  7. Baz22

    Baz22 Registered User

    Dec 30, 2017
    46
    Male
    South West
    What Kevin said is all really good information. Do NOT trust the NHS or Local Authority as they invent ways to avoid funding. Keep detailed records of everything. Even when you get a Continuing Health care Assessment they will move the goalposts to deny funding. You need to be bloody minded which is not easy when you are emotionally involved. Do get and read the information from the Alzheimers Society and Age UK. It is a long hard fight at a time you feel vulnerable. Good Luck.
     
  8. canary

    canary Registered User

    Feb 25, 2014
    10,284
    Female
    South coast
    Unfortunately when you are looking at Local Authority funding, you are looking at a tick box exercise and they will make you go through the hoops - if you dont go through them you wont be able to get any further. ATM, they are not paying for the carers, so they cant tick that box - and you should never have been paying for them in the first place. although I can understand that temptation. SS will only consider a care home if they have been paying for carer 4x a day and she is still at risk. ATM you are providing the solution and, to be blunt, they do not care about whether she is lonely or needs stimulation - that are only looking at whether she is "at risk". By this they mean - does she wander outside her home, or leave the gas on, leave taps on and flood the place, or at risk of self neglect - not eating or drinking, getting her medication, incontinence, falls etc. If carers coming in plus family involvement can deal with this they will not consider a care home.

    You may have to accept their offer so that you can prove its not enough, unfortunately. As @sah suggests, keep a diary of everything that will back up your claim that she needs more help.
     
  9. JoJo2821

    JoJo2821 Registered User

    May 20, 2018
    42
    Thank you so much for all giving very useful advice.
    Yesterday the social worker assigned to mum at the hospital explained that her needs were not meeting the threshhold to make her eligible for a care home. They think the adaptions they make to her flat will suffice. They even suggested in a round about way it might be good to ask her to be incontinent. When I told the social worker that she does wear incontinence pads at night but she still prefers to use the commode or toilet he asked me to tell her to just wee in the pants rather than get up! I said I could do that but because she has Alzheimer's she doesn't remember I have told her that or why!
    I asked to speak to the senior social worker in the hospital and he agreed to look at sheltered accommodation for her with extra care. My question regarding this is if it is agreed this is in her best interest (it costs the council £700) how will they decide the funding on this?
    How much of that will they pay? Because if it is say £300 a week I'd rather have that as a direct payment and top up the rest for a proper care home. I know that sheltered accommodation will be a short term stop gap and I will have to move her all over again in the not so distant future.
    They cage all of this discussion in wonderful ideal about keeping mum's independence and privacy, and how it is always best to keep the individual in their home for as long as possible but Alzheimer's has destroyed all of that. What she values now above anything is companionship, reassurance, safety and care. I want that for her more than anything but they make me feel like putting her in a care home is a terrible thing.
     
  10. Casbow

    Casbow Registered User

    Sep 3, 2013
    989
    Colchester
    I think your Social worker needs a bit more training. I had a lady from the dementia unit visit once. We sat in the dining room with my husband pacing in and out like he always did and after five minutes she said" Look can we go somewhere else to talk. I can't stand this ." . Welcome to my world.!! I hope you get sorted with your mum. It usually takes a fall, or blocked hospital bed or violence to get a care home place. Good luck.x
     
  11. Baz22

    Baz22 Registered User

    Dec 30, 2017
    46
    Male
    South West
    You get a lot of angst and guilt when you put your Mum in a care home and it stays with you as it is not an ideal environment. However it is the best thing we ever did even though we would love to have her amongst us. In a good care home they provide all sorts of stimulus and help and are there 24/7. Some of the staff are truly amazing in their care and dedication. We found in our area that the Social Services were inadequate and sadly lacking whether it was a personnel shortage I do not know.

    We have a rota whereby a family member visits everyday. That said it is not cheap and currently we are having to fund it. There are no easy solutions just different levels of stress. When you have had a good visit you feel on top of the world. My Mum went from incontinent at night to incontinent 24/7 in a fairly short space of time.

    You
     
  12. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    You see this is precisely why Dementia needs to be treated as an illness. A medical problem, not just 'a social problem'. Dementia takes all the aspects of independence and privacy away, because by the time one is ragged enough, police have been involved because of wandering or the PWD has been in hospital, to consult SS the situation is usually way past the point of the PWD being able to manage alone in their own homes.

    Personally I would like to see the LAs running their own Council run Homes again. Ones with reasonable rates, which are more affordable within the budgets of the LA, rather than having to pay expensive run-for-maximum-profit Homes.
     
  13. DeMartin

    DeMartin Registered User

    Jul 4, 2017
    711
    Kent
    It’s all different if you’re self funding, “here’s a list of care homes with vacancies, we’d like her out tomorrow “ End of social worker and hospital involvement, and I haven’t had any contact since.
     
  14. JoJo2821

    JoJo2821 Registered User

    May 20, 2018
    42
    Thank you - it's quite an eye opener. She has been having about 5-6 falls a week! That's why they want her to go the incontinence route because then she wouldn't need to get up!
     
  15. Casbow

    Casbow Registered User

    Sep 3, 2013
    989
    Colchester
    Surely not. People can go in care without being incontinent. Can't understand this. Other than different councils tend to do things a bit differently to others. But there is also an awful lot of shortages for homes. They seem to be full up in most places. Have to say that your mum going in the home will probably not stop the falls. Just hopefully reduce them. They can put alarm mats down for a start. If your mum had someone at home 24/7 she would be able to have an alarm pad. I hope you can get it sorted for your mum and of course for you.x
     
  16. canary

    canary Registered User

    Feb 25, 2014
    10,284
    Female
    South coast
    I think they have a sort of tick-box points system based on behaviour that makes them at risk.
    My mum was continent when she moved into her care home, but what swung it for her was that she was not eating or drinking, she was going out at night in her dressing gown and knocking on neighbours doors because she was lost and she had previously refused carers (I organised them and she wouldnt allow them in)
     
  17. kindred

    kindred Registered User

    Apr 8, 2018
    2,183
    Look, this happens to so many of us. We get guilt tripped by the social workers and we have talk about the independence and privacy and freedom. We all know what the real agenda is. As for always being best to keep the individual in their own home, well, I have had a letter published in the times today about this. You can see it if you go to my posts in I have a partner with dementia. It really is time to speak out against this. All strength to you, putting someone you love in a care home is often the very best and most loving solution, as I know. Thank you for posting.















     
  18. kindred

    kindred Registered User

    Apr 8, 2018
    2,183
    Dear God. Mind you, I am self funding (for OH) and I said, please, I have no energy and my husband just shouts all through any phone calls I try to make, please could you just give me a list of care homes with vacancies ... (This was when I was ill and was trying to get respite). They said they could not do this as it would confer commercial advantage but they could send me a list of local care homes. They did this, but not before they had blanked out all the contact details ...
     
  19. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,295
    Female
    South of the Border
    I would like to read your letter, but I am not sure how to find it, even with the directions you have given here...... can you help me??
     
  20. kindred

    kindred Registered User

    Apr 8, 2018
    2,183
    Of course, maryjoan, thank you. Stay in this forum. Go to We're short, we're sharp but we're out there and scroll down about 3 posts to where I put the letter online.
    Thank you!
    Gx
     

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