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

Vashti

Hi all

This is a bit of a sensitive subject.

My sisters husband has MS - secondary progressive. He is one of a percentage who is terribly affected by this illness, mentally as well as physically. It is the worst of diseases. He was a gym teacher - and now he is 52, doubly incontinent and the poor man has changed beyond description. He can't make conversation, and his life is literally lying on a pressure mattress staring at the ceiling.

We love him. Please don't get me wrong. He has carers coming in three times during the day, his apparent needs are taken care of, but the burden on my sister is terrible. They have a teenage son (14) who has to help lift and change his Dad at night. The son is very withdrawn, and although has lived with this for ten years, the situation appears to be upsetting him a great deal and will only get worse as he gets older.

My sister loves this man, but he is totally unable to return this love. He is not the man she fell in love with. It is like he has died...but he is still there. She cannot grieve for him, and she is beginning to resent the situation. She would never say this...she married him for better, for worse, and she is a very loyal person.

But she has changed. She is terribly depressed, and has no joy in her life. I am worried about her mental health..she just sees the years stretching ahead of her.

We are all in Scotland. The NHS have said nothing to her about residential care, and I although I have broached the subject with her, she has no clue what to do next. She has spoken to her GP, who says any permenent residential care would have to be private. With her part time job, there is no way she could afford this.

Does any one here know anything about the subject?

Many thanks in advance.

bluebell13

Hello vashti. What a terribly sad situation. As I live in England I am not sure whether the rules differ from Scotland. Any move to permanent care (he would need nursing and not residential due to complex needs) would entail a series of forms to assess the financial situation of the family to assess whether they would qualify for funding.

What about the option of respite care for short periods to give them a break?I work in a palliative care setting which offers weekly respite care at regular intervals to patients with illnesses like your brother-in-law has to enable carers to take a holiday or just have a rest.Is there anything similar to this where she lives?

Hope this is of some help. I wish you all the best in such a difficult situation.

shazrobo

hi there, sorry your family is going through such an awful time, big hugs.
has your sister spoken to the local social services, i am sure they would be able to offer some help, eg finding resedential care

Vashti

Thank you.

Bluebell, he does go to a respite centre respite - once every couple of weeks, and for up to a week in the school holidays, (but my sister and son never go anywhere. He would rather stay at home with his friends, play the PS2...etc..what kid wants to be with their mum at this age.)

She actually phoned me to tell me when he went in for his respite day at Easter, when she went to collect him he was sitting all hunched in his wheelchair wearing an Easter Bonnet. She said it made her feel sick...this poor man, once so proud, lost all his dignity...and the staff just thought they were doing the best for the patients, had them all working with crepe paper and paint etc.

She said it suddenly bought it home to her what his life had become. I could weep for them - I am now actually thinking about it.

Apart from anything else - they live in a hilly area, she is tiny - and she struggles with the wheelchair, and getting him in and out of the motility van.

Sometimes not going out is just easier.

Thanks for listening. I have an easy life compared to my sister, who I love to bits. I don't know what is worse, watching him go through this slow living hell, or her.

Count your blessings everyone.

Louisa_Jane_2

I was just going to echo what shazrobo mentioned about Social Services. They should be able to arrange respite care or even someone to sit with your BIL for a few hours which would certainly relieve your sister - are there any support groups for carers in your area ? - having a social worker will be someone to talk to about the pressures of caring for someone and the practicalities.

Louisa_Jane_2

Sorry Vashti - you posted while I was writing!

Vashti

Oh and thank you Bluebell for pointing out is would be a nursing home that would be needed...not a residential home. I didn't realise they were different actually...

Louisa_Jane_2

Have you Crossroads in your area - very good where I am
http://www.crossroads-scotland.co.uk/

Vashti

Thank you for that link, I will email it to my sister.

Gingernutmeg

My boyfriend's parents are in a similar situation at the moment, as his mother suffers from Huntington's disease that has degenerated to a point where she can no longer live at home. As you say, it's an awful situation, particularly when there's mental degeneration as well as physical. My boyfriend's mum gets angry, depressed and violent, and we often struggle to calm her.

After struggling for a long time, my boyfriend's dad eventually agreed to contact social services and they have been really great. Initially they assisted up in finding respite care, and the social worker has been fantastic in getting us fast referrals to hospitals when we've needed it. At the moment we're at the stage where we're looking for a long-term nursing home, and again they have been great. The help is there for those who need it, and although it's heartbreaking to have to ask for it, to feel that someone you care about is getting the care they need is a huge weight lifted.

Also, we've found the Huntington's Disease Association to be very helpful, particularly in recommending homes that have experience in the condition. If there's a national MS support group/association, I can really recommend that your sister gets in touch as they can be a real source of advice and support.

wolfehouse

it is worth asking the local authority (social services) if they fit the profile for funding help. otherwise it is a secure tenancy I believe

margaret blackwood housing association have some 24 hour supported places:
http://www.mbha.org.uk/web/site/Home/Home.asp

the one in belses gardens in glasgow has 24 hour support:
http://www.mbha.org.uk/nmsruntime/saveasdialog.asp?lID=530&sID=282

they also have 24 hour care ones in ayr, aberdeen, stirling and greenock. You could talk to them directly about their set up.

Personally I would talk to the people at revive (ms society) who will probably have a lot of experience with this. They also have a counsellor if your sister wants to talk about how all this affects her or her son.
http://www.revivescotland.org.uk/