NHS Residential Care? Worried about my sister, Carer for a Husband with MS.

Penry

Hi Vashti, Really sorry to hear about your brother-in-law's situation, it must be very difficult for you all. Just wanted to say that for those under 65 in scotland nursing care is free but personal care is not. This means that there might still be a financial contribution required from your b-i-l/sister if they do decide that nursing home care is needed. A financial assessment by social services would determine this. This would take into account half of their joint savings but be based on his income only. I think Social services have some leeway to disregard half of this, for example if he has an occupational pension which your sister is reliant on. However, if Health accept that his medical needs are high enough to meet their "continuing care" criteria (ask Social services or his consultant) they would pay for his care.

Is your b-i-l able to communicate his wishes? If he is assessd as still having the ability to make his own decisons he would need to agree to go into nursing home care. If he does, as a younger man he would probably be better living in a home with a "young disabled" unit, more appropriate than sharing with a mainly older people. Not all nursing homes have these and they can tend to be more expensive than social services will pay, requiring someone else to pay a "top-up".

As other's have said, the first step should be your local social work centre, has he got a named social worker? if not ask for the duty or access team. Your sister is entitled to a carer's assessment in scotland and there might be "young carer's" support available for their son. Additional home care, respite, day care might also be available. Also does he have access to a specialist MS nurse who might be supportive? Sorry for the LONG post. HTH

carbonel

As usual, lots of good advice and support on here.
Just wanted to add - there's usually lots of help around for the person with the condition/disability, but not so much for the family carer. A priority is for your sister and nephew to get some support for them. I have worked in the Care profession for a good many years and this is something that is often overlooked, people are expected to 'get on with it' when they are looking after a family member. We are not superhumans and can only go on for so long without help and support. I don't know what is available in Scotland but would hope it's similar to England. One previous reply mentioned Crossroads, and the MS society - both will be able to help your sister and nephew. They need to be able to talk about how they feel without fear of being judged. Your sister possibly feels guilty that she is even considering nursing care, it's like an admission of failure to cope with looking after her husband in his time of need. Your nephew possibly sees his mum getting tired and upset and feels bad that he cannot help more, and angry that this has happened to his dad. There will be lots of emotions churning about inside both of them - can they talk to each other about it? I know he's only young but maybe he will feel he is supporting his mum better if they can get their feelings out in the open.
You sound very supportive already but can you spring a surprise on your sister? Arrange for you and her to go get a makeover, massage, whatever you know she will enjoy - don't tell her, just arrange a carer to sit with her husband and arrive to take her out. Do the same for your nephew, spring a visit to a Pizza or burger place with a couple of his friends.
Also, your sister should be able to get some equipment to help with lifting/turning her husband, they shouldn't be doing this manually. The Occupational Therapists or Moving and Handling Advisors at your local Social Services should be able to help with this.
Sorry I have gone on a bit but, like other posters, I would like to offer whatever support I can to you and your family.
Good Luck.

Vashti

You are all so kind.

Unfortunately my sis lives a good bit away from me...although we are all in Scotland, so I don't get the chance to get her away from it all very often. We did go on a short break to Barcelona last year with our teenage sons, and we are in constant phone and email contact. And, she gets flowers, sent out of nowhere for the occasional surprise, usually sent by my lovely hubbie (who is also going down soon to replace her kitchen.)

She does have a hoist in the house...and a downstairs room has been turned into a bedroom, with a disabled shower. But when the carers leave at nights, and she is on her own with only her son for help - sometimes her husband will have a particularly bad night - he has IBS too poor soul - and needs changed frequently (although he does have a super pubic catheter and bag which also needs changed.)

As his carer, my sister has had to get used to this, although she would always say she is not a 'nurse' by nature.

You all seem to really know how she is feeling..and her son. It makes such a difference - really. Thank you. And my feelings too (I feel so useless, seeing her sink deeper into complete depression with her view that there is just no way out.) We all too have to balance these feelings with how we feel and felt for my
B-I-L, who was a smashing bloke and would really hate to know he was such a burden. He never really says anything at all, he just stares into space.

Great forum, thank you.

Justie

I can't add much to what has already been said but would echo the posts about your sister getting more support from both social services and a carers association and for your nephew to get help from young carers - he will find it helpful to see that he's not the only one in this position and to be able to get some support. Caring/ being a carer is very draining and while there is more support out there than there used to be it's still not always easy to access. Could your sister get more than one week of respite care? It sounds like she needs a good break or else she's going to get ill too. :grouphug:

Errata

I'm so glad you've found the posts helpful and informative, and understanding.
You sister's emotions must be in complete turmoil: she's lost the husband she had for so many years, has had the burden (and it is a burden a times) of caring for him in a way she never expected imposed on her, she's lost the future life with her husband she must have dreamed of when they married, and her child is being brought up by, to all intents and purposes, a single parent.
I'm just wondering if this is the kind of life her husband would wish for her if he could communicate his thoughts? Although you live some way from your sister, would this be the kind of thing you could have a conversation with her about? If there are other members of the family, parents, siblings, uncles, aunties you or your sister could talk this through with?
It's not uncommon for carers' physical or mental health to break down. What would happen to your BIL if this happened to either your sister, or his son?
We all marry for better and for worse, but in our wildest dreams we sometimes can't imagine how worse it can actually be. If your BIL is able to communicate his wishes and expectations, with support from a 'neutral' professional, would he be willing to do so?
Apols for more questions than answers, but hope it helps. Right now, it seems like everyone is desparately unhappy with the situation as it stands, an this may include your BIL. Best wishes.

Vashti

We talk about it all the time Errata. She is dreadfully lonely too..although she does have a network of good friends where she is. You can be surrounded by people I suppose, but be the lonliest person on the planet. Even with all the coffees and long chats, we none of us know how it is when she goes home and closes that door behind her. She has lost her future, all her hopes and dreams for family life, retirement. She can't even get a hug from the one person that would have once been able to make it all better, if only for a short time.

Ex colleauges, teacher friends of my B-I-L, used to come and take him out in the early days, but he became so withdrawn and seemed to be getting no pleasure from the outings that they slowly dried up. He has never said much about his illness. When he was first diagnosed, it took about five years for his health to really deteriorate, and he never ever talked about it in any depth or made conscious care plans while he was still able minded. Neither of them talked about it in front of anyone - it was like this huge, 'in your face' hell looming over them 24 hours a day but we never spoke about it. How strange, now I think back. He changed overnight from his diagnosis, became very insular - of course, he had the worst time of all of us accepting it, being the one that had to live with it. He did say once that he couldn''t bear not being the husband and father he always thought he would be, and once caught my sisters hand out of the blue a few years ago and said a choked 'thank you' when she thought he was unaware of everything.

His parents are both dead, and his one sister lives in Yorkshire and seems very uninterested.

Our parents are in their eighties, and are not in a position to help either.

I can't begin to think what to happen to him if she got ill, or had a mental breakdown, or just never went home again.

Justie

it's weird the things that don't get talked about - my dad was very ill on and off for more than 3 years before he died and on many occasions we were told 'this is it' he's got a couple of days left at most, only to then see him pull through. We knew he would never fully recover but as there was no definite diagnosis of 'he's got X months left' we never really faced it. Not once did we find out whether he wanted to be buried or cremated, did he want a DNR and all of those practical things. He never volunteered any information and didn't really talk about how he felt about being ill. My mum then had a lot of stress planning the funeral as she didn't know his wishes - we've since made it clear within the family what our wishes would be should we die or become very ill and it's really made me think about all these things - but rest assured your BIL is not unusual in internalising everything. It's too easy to say it's a male thing as I think it's more of a general human thing but in my experience women tend to talk things through more whereas men don't want to burden anyone with such talk. It's very odd to be grieving for someone before they die but that's just what you do. My dad was not my dad for a long time before he died, his personality changed and he aged rapidly. I still loved him but he was a different person and that took a lot of getting used to, how much harder to see that happen to your husband and contemporary...

I hope your family find the support they need both practically and emotionally. :grouphug: