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Care & carers

Brother needs to go into a home, help!

(33 Posts)
Classic Sun 22-Sep-19 10:48:40

My 46 year old brother has liver disease (which he will die from in next couple of years) deaf dumb, partial eyesight but copes with sight, autistic but not with official statement, but the biggest problem is lymphadema in thigh and buttocks and odema in lower legs. Legs are so swollen he can barely walk and falls, lower legs ulcerate and stream lymph, and need dressings and compression bandages. My sister and I, 60 and 61 have been caring for him, and trying to work. He recently had a fall and spent weeks in hospital, where he was on the 'Liver' ward, they had no idea how to care for the rest of him, he came out no longer able to care for himself at all, and is staying at my sisters house. She is doing her best, but he is incontinent, awkward, demanding but at the same time miserable. I do what I can three days a week, around work and travel commitments. He needs to go into care, for all our sakes, social services talk about assessments, need and finance, about getting teams of strangers into look after him, (he was living in a rented flat) though we know he would send them away. There is a bupa home, that is halfway between my house and my sisters, and brothers, but in a different local authority, apparently they could meet his needs but a top up would be required. My brothers savings, less than £9000 would last a month or two, and my sister and I have no savings. My question is, if we request a NHS continuing care assessment, how long would that take, would that pay for the Bupa care home/if he gets it? Would Portsmouth pay for him to live in another Hampshire town? Should we spend his savings and get him into the home while we wait for the assessment?

annsixty Sun 22-Sep-19 11:43:20

You need expert advice on funding , finance etc.
I got mine from AgeUK but as your brother is quite young I don’t think they would help.
Try CAB or the team that deals with his deafness, sight, etc.
Good luck, it is a minefield.
Get his GP involved

Floradora9 Sun 22-Sep-19 18:02:36

Be firm with any agencies you need to work with . Tell them that you and your sister cannot cope and something needs to be done . Has he got a social worker ? If he does involve them or contact social work department and see if they can help . Set a deadline after which you cannot deal with your brother .

Hetty58 Sun 22-Sep-19 19:16:42

I agree with Floradora about a deadline. It is the responsibility of social services to make suitable arrangements for his care. Hopefully, the rented flat situation is a past one (if not, end the tenancy) as residential and nursing care seems appropriate.

Care is not limited to the immediate local area but finding the right place can be tricky. Be aware that homes do their own assessments of potential residents before they allow admission. There is also a 'trial' period after which somebody can be asked to leave.

It is not up to you or your sister to care for him. He is entitled to and should receive a continuing care assessment. I would involve a specialist solicitor for this (with no upfront fees) to ensure he is awarded CHC, which is itself free.

CAB are very helpful, as are DIAL:

annsixty Sun 22-Sep-19 19:47:28

Your brother’s savings of £9000 should be disregarded when assessing care charges.

Luckygirl Sun 22-Sep-19 21:45:21

Yes indeed - £9000 is below the limit so would be ignored for local authority SSD funding purposes - he will be treated as having no savings; but they will take his income into account - they would expect him to contribute a large proportion of his pensions/benefits etc. I am assuming that the BUPA home you have found charges more than the fee the SSD are willing to pay and this is why they are asking for a top-up. It is an entirely iniquitous system which basically condemns those with no-one to top up to the most basic standard of accommodation and care.

Your brother undoubtedly qualifies for continuing healthcare funding (the NHS pays for his care) from your description of his problems. But there is a complex assessment which mainly seems to be about avoiding having to pay! I would strongly recommend that you contact Beacon - They are an organisation - I believe under the aegis of AgeUK - that provides detailed advice as to how to get this funding. They have been immensely helpful to me - I am in a similar situation with my OH. But please be warned - it is a process that demands a great deal of time and effort to be successful - but Beacon will give you guidance. The guidance and advice is free; but if you use them to represent you then there is a fee. Please get their advice before you attempt to apply otherwise you will be fobbed of straight away and told he does not qualify.

I am so sorry your brother is so ill and do know what a headache it is having to steer your way through these complex funding issues when you have a loved one who is so unwell.

Classic Sat 09-Nov-19 04:41:36

A very sad up date. My brother was allocated a social worker, she couldn't do sign language but as my brother is used to a world where people don't speak his language, that wasn't too bad. Unfortunately, she was part time, a strange choice for such a vulnerable person, as she was only available a couple of days a week and never got back to me after any messages were left.
We got off to a bad start, she had read the notes saying that I had refused to have a team of strangers going into his house four times a day to change his pad, pick him up if he had fallen, get him his meals, we didn't need that, we as a family looked after him till he needed full time care then he moved into my sisters home while we waited for a nursing home place. Because I had refused their offer of him going back to his flat and them sending people round, she decided he didn't deserve care.
She insisted that because it didn't say terminal on his notes, then I must be lying about how ill he was. I had read the National framework for Continuing Care and requested his assessment, she refused him one saying he wasn't ill enough and didn't meet the criteria to even get an assessment, though she has still not sent us the results and reasons in writing.
After many weeks the district nurse finally turned up, with the social worker, the delay was caused by the SW being part time. DN insisted if hes as ill as I said he should go straight into hospital or at least see a GP, she made a big fuss about how was he going to eat during the 4.5 hours my sister and I were about to go to work for. They said he could go to an assessment unit if a GP was sent for and agreed there was a need.
Duty GP came out, no idea about him or condition, said he was fine. That was on the Monday, I took him to see his own GP on the Tuesday, and she said he should be in a nursing home and wished me luck with it.
ON the Friday he reached the stage of not being strong enough to take the few steps from wheelchair to bed, even with my sister and I trying to part carry him. Due to lymphedema and ascites his legs were up to about 7 stone each and he was barely mobile. The locum Dr came again, while he was laying on the floor, we just couldn't lift him into the bed, and he was too weak to help. I had already called an ambulance, we were just waiting the 4 1/2 hours for it to come. In hospital they quickly assessed he had very little time left to live, which I had been able to see myself for weeks, and the reason for trying to get him into a nursing home. He had a fast track assessment for continuing care which was allocated but was now too ill to travel to a nursing home, and no hospice space was available. SW phoned me on the Monday, a week after she was still insisting he wasn't ill enough to even have an assessment, and after having refused him a Specialist Deaf Blind assessor, (his legal right to have one). In her phone call she tried to suggest his having had a sudden worsening and a 'fall' were the reasons for his hospitalisation, not the kidney and liver failure he was dying from. Sadly his last days were spent on a busy ward with a demented patient in the bed opposite shouting out "for gods sake hurry up and die, and do it quietly" and other even worse obscenities throughout the nights, as my brothers lungs filled with fluid and he was coughing. I stayed at my brothers bedside, day and night, 3 days and nights before a side room became available, and I stayed for the remaining 2 days and nights with him, there, untill he died on the Thursday morning. It was so traumatic, a terrible strain on the nursing staff on the first ward, it was so wrong, he shouldn't have been there to die.
I had previously found a lovely nursing home, where he would have had his own room, care for his legs which were oozing lymph and splitting into open wounds for weeks before he died, and most of all they had staff that could communicate in sign language. I feel so angry that a know it all but knows nothing social worker had the power to deny him that, to basically call me a liar because what I said wasn't written in his notes, that I was exaggerating his illness, and because I wouldn't go along with her idea of care, would get no help. I miss him dreadfully, but mostly I feel I let him down because I couldn't get him the help he needed.

heavensjoys Sat 09-Nov-19 05:11:46

Classic Reading you very sad story about your dear brother’s last weeks has filled me with great sadness and sympathy. I am so sorry for your loss.

What is happening in this country, when a very sick vulnerable man, is totally disregarded and your pleadings for him to be placed in a suitable home, have been completely ignored and disbelieved.

Your brother’s Social Worker should hang her head in shame. So many people in this very sad tale, have let your brother down. I just wanted to send you a few words of sympathy for you and your family. You must all be heartbroken that the whole system has let your dear brother down so shamefully.

My heart goes outo you all. RIP your dear brother. May he rest in eternal peace now, from this sad sad world. God bless him.

Dottynan Sat 09-Nov-19 05:22:55

I cannot believe you are having to ask on here for help. I thought we were a caring society. With all you brothers needs you should have professionals supporting. Start kicking some backsides and demand help.

Willow500 Sat 09-Nov-19 06:01:11

Classic I'm so sorry for your loss. I missed your original query so have only now read the sad outcome and my heart goes out to you and your sister for all you have been through. The care system in this country has been broken for a long time and I wonder how far we have to go before a fairer way of assessing desperate people is put in place. flowers

Grammaretto Sat 09-Nov-19 06:28:47

I am so sorry to read of this tragic end of life experience.
I hope you can send a copies of what you have written here to someone who needs to know.
Your MP perhaps. The newspapers? The health workers and SW dept.

Sending you and your sister strength and prayers.
You did what you could. I wish it had been different for you and him.

BlueBelle Sat 09-Nov-19 06:36:56

dottynan please read the thread properly

What a very very sad story classic you did everything you could under dreadful circumstances You love your brother and he knew you were with him I wish him and you the peace you deserve xxx

gmarie Sat 09-Nov-19 06:39:47

So very sorry for your loss. Reading all that you three went through broke my heart. flowers flowers flowers flowers flowers That social worker should be fired.

cornergran Sat 09-Nov-19 07:40:51

I’m so sorry for the loss of your much loved brother. You’ve been through more than anyone should, be gentle with yourself now. classic. You have nothing to reproach yourself about. flowers.

travelsafar Sat 09-Nov-19 08:01:21

Heartbreaking story with such a sad outcome sad You and your sister are to be comended for all the care and stress yo have both been through. I hope you both can have some well earned rest to get over all of this . Be kind to

ninathenana Sat 09-Nov-19 08:41:50

I'm so sorry for your loss.
Such a tragic chain of events.

Your brother was so lucky to have you to fight for him. It certainly was not you that let him down it was the system which I know from experience often doesn't work, that and the inept SW.
If I were you I'd be writing to her superiors.
flowers flowers

sodapop Sat 09-Nov-19 08:48:55

I'm so sorry Classic that is such a sad story and unfortunately not uncommon.
Your brother deserved better care than he was given and you and your sister should not have had to struggle as you did. It's a sad indictment of things today.
Take care of yourselves now, you did all you could. thanks

dragonfly46 Sat 09-Nov-19 08:58:59

I am so sorry to read this Classic and for the loss of your brother. I would make a formal complaint about the SW. she needs to be reprimanded at the very least!

GrandmaMoira Sat 09-Nov-19 09:02:15

I'm very sorry that you have had such a terrible time. At least your brother is at peace now. You have nothing to feel guilty about.
The system we have now is appalling and failing those most in need. I know a very elderly couple who are currently going through this. The husband has become very ill and the frail wife is desperate to get the help needed.

annsixty Sat 09-Nov-19 09:12:10

I could weep for you and your brother, you both and especially your dear brother deserved so much more.
Please do not let this go, send all details to everyone you think needs to know.
My H had 2 very young, inexperienced SW but at least they were lovely young women who did help us.
The one you dealt with should have retraining , in my opinion she should lose her job, but that won’t happen.Your MP should take up your case.
I feel very bitter on your behalf and sincerely hope for justice for you all.
I send you and your family my condolences.

IslandGranny Sat 09-Nov-19 09:12:54

You are concerned that you might have let your dear brother down. Please feel reassured that he would know by your constant presence and kind actions that you loved him. You were his champion.
You knew him and cherished him and made his life meaningful.
If you and your sister can summon the strength from somewhere then ask for an enquiry into the break down of SW care which has let down the very person the system was set up to protect. Such an action might bring some healing for the family and it may prevent others experiencing a similar ordeal.
As you grieve for him together and remember past happier times with fondness I wish you peace. 🕊

Liz46 Sat 09-Nov-19 09:12:57

I agree about making a complaint. This is what I did. Those of us who don't know how to get round the system don't do very well.
I remember when someone came to assess my mother. If mum could make herself a cup of tea and a piece of toast, then she was able to live at home. She couldn't manage so the assessor helped her and then said she was fine!

annsixty Sat 09-Nov-19 09:14:34

Send a copy of your complaint to the leader of your local council, the CEO and head of SS.

mumofmadboys Sat 09-Nov-19 09:15:24

Classic ,it sounds as if you and your sister did your best. Well done to you both. May your DB RIP

midgey Sat 09-Nov-19 09:25:58

So sorry to hear your dreadful story. Please complain about the social worker or she will carry on with her uncaring attitude. RIP to your DB flowers