Some help and advice

Primary progressive MS
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Hi, I’m new to the forum. I don’t have MS, but my younger sister does. She is 43 and was diagnosed with primary progressive about 12 years ago. She is now confined to a wheelchair, with only use of one arm. She is married to a man who is mobile, but has his own disability. They have a soon to be 16 year old daughter. My brother in law works full time, managing a factory but is my sisters, main and only carer. She will not allow my brother in law to get carers in to help. She refuses to not only let her daughter help with the house hold chores or simple caring duties, she hasn’t even told her what’s wrong with her. Just simply that mummy has sore legs.

My my brother in law struggles to cope, and this has meant that my sister once went without a shower for 2 years, just washed down. Her hair can go unwashed for weeks at a time. She is always in pain and get aggressive towards her husband when he tries to move her into bed, out of bed and doing toilet ing etc. She doesn’t hit him, but the verbal and emotional abuse is scary.

I hope I don’t seem selfish, and don’t want to make it about me but, I’m not coping with this. I cry myself to sleep every night and have actually stopped visiting. I can’t stand to see my sister be like that. Not just the sitting in a wheelchair, but the unwashed bit, the house stinks, is always messy, and if you raise these issues, she blames her husband and then asks me to leave. My parents, who are both in their 80s, know that this is all wrong, that they need to get help, but they don’t say anything. They don’t want to upset her. I just see my beautiful wee sister, with such a lovely nature, who was always dressed beautifully, smelled gorgeous, and would never argue with anyone, turn into this person. I know she is in pain, I know this was always going to change her, and maybe I need to learn to accept that this is how it’s going to be, but I can’t. I can’t stand to see her like this, or her wee family. Social work sent someone in to assess her for something, not sure what, and I hoped that this would trigger some kind of emergency care package. It didn’t. All that happened was that she got an iPad to help her control the tv.

she also hasn’t attended any medical appointments. None. And I just wonder why this isn’t being flagged up somewhere, why no one seems to care about her, why she has been forgotten. I have tried, on many occasions to raise these issues with her, but she gets aggressive and upset and I leave. Sorry for the length of this post, but I feel so desperate

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Hello Anna, iv’e just read your message and wanted to reply with advice, sadly i don’t know all of the answers. I really feel for you and your sister…Sadly disability changes us as people and what we once were can feel like a distant memory, i wonder if as well as this dreadful illness your sister is suffering depression. I find the depression far harder to cope with than the loss of my legs. I have also got teenagers and i have really struggled to ask them to help out more…I think it was my own guilt that i felt and still feel for getting ill and “putting them through all of this” daft but that is sometimes how I’ve felt . A good friend pointed out to me that i was not being cruel but actually teaching them important lessons in life by asking them to help but also being honest with them about my disabilities.

I wonder if CBT might help your sister it really made a difference to me, and helping me feel better has helped my whole family.

One last thing having a social worker may feel intrusive at first, but they are so kind and really want to help, mine got me direct payments which means that i can chose my own Carers.

I hope this helps, you sound like a wonderful sister, please don’t suffer alone there is help out there and support for you as well as your sister

Michelle xx

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Hi Anna

Your sister is lucky to have you, a loving caring person, it’s hard on all members of the family.

MS not only affects us physically, but playys havoc with emotions, and although she appears to be a very different person, deep down she is still that lovely sister, but needs help desperately.

I would be inclined to ring social services adult care team, or if she has one, her OT and have a word with them. They are incredibly useful, putting in place any sources of help that they think appropriate. I appreciate this is a really difficult situation you are in, I wonder if it is possible to have a chat also with her GP, as they may be able to offer a solution?

Whatever you decide to do, I wish you all my best wishes.

Pam x

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your brother in law needs to get in touch with adult social services and he needs to ask for a carers assesment for himself and also an assement for your sister too, they need help but i do think your brother in law has to be the one to get the ball rolling,its not fair on him. Your sister having MS affects the whole family not just the person with MS.If she wont listen to you is there anyone else that could try and talk to her,she sounds as though shes buried her head right in the sand,and thats no good for anyone,it just makes things even harder.Hope they get the help they clearly need,it must be so upsetting for you.

J x

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AnnaB, l do hope we can help you find the right care for you brother in law -niece - as well as your sister. Does sound like depression is the worst of her problems. Your niece is surely aware how ill her mother is - and should be told what is going on. l was pregnant with my daughter when l first started with PPMS - that is 34 yrs ago now. My daughter grew up knowing l needed lots of help - she grew up fast l admit. But it made her a very caring person who helps everyone she meets who needs it.

lt sounds as if your sister would benefit from going into a special rehab hospital for respite - she would be cared for and assessed as to what help she needs. And at home - an occupational therapist could put into action ideas to help her live more comfortably. A wet room with hoists to allow her some dignity. Sounds like your poor brother-in-law has his head in the sand and does not know which way to turn - what a life it is for them all ----- and of course you.

l do hope a care plan can be devised that suits your all - and life becomes easier. You might need to start the ball rolling yourself. Men do not always want to admit they need help - feel they have failed. But three lives - four with you - are all suffering for want of professional help and care.

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Michelle

thank you. I think you may be right about the depression, I’ve suspected it for a long time. And CBT would be fantastic, if she would accept it. She won’t. She just wants to die. That’s what she tells me. When I read some of your posts on the forum last night, for a brief and hopeful second, I thought you were her. We call her Shell. I’d hoped that she was trying to find her way through this and seeking help, but no. Thank you for your kind words.

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Thanks. I actually was, at one point in my career, a social worker. I feel her family is being incredibly let down by social work. I have sent a text to one of my friends who is a senior social worker, to ask for some advice, thank you so much for the prompting

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Thank you. The problem is, my sister just point blank refuses any help apart from demanding it from her husband. He seems so brow beaten and scared, he won’t go against her. Unfortunately too, this experience has not made her daughter very caring, more aggressive and defensive, which is a real shame, because underneath it all, she is a lovely, fun girl. The parenting style being used seems to be let her do what she wants and let’s give her what she wants. She does well in school though, and progressing as she should, always in the top groups etc. But t I doubt she is coping emotionally, she doesn’t know what’s wrong.

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Thank you MrsJ. It really does affect the whole family. I have been really surprised at how much it has affected me. The emotional toll seems to be getting greater by the day. I feel selfish though. It’s not me being robbed of who I am, my sister has been. I want to help. She won’t let me

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I can’t offer any advice the others haven’t already spoken of. Unfortunately someone needs to be firm with your sister, it isn’t healthy for your niece to live in the kind of environment you talk about. I wonder if suggesting she takes control of her own personel hygiene and the cleaning of the house by employing someone to do it might give her the impetus to look into direct payments etc. Do you know if she claims PIP or any other benefit?

I hope you and your brother in law find a solution to this very soon and you hear from your friend the social worker soon.

Best wishes

Jan x

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Thanks Jan. I really don’t know if they get any money for that. I work for another big health related charity and asked one of our specialist welfare rights officers to do a home visit for them. My sister told the poor woman to leave, so I’m unsure if they already have it sorted or think that I will find out their personal business so didn’t want the help. I agree that someone needs to be firm, and if I’m honest, I am happy to be that person, but my fear is she will take it out on my brother in law and it will make their living situation even worse. I go from being so, indelibly sad about this situation to incredibly mad at my sister for putting them into this situation. I know she will tell me that I don’t understand and that she isn’t ready for someone to help or that it isn’t my business and she just wants to die. What I need are replies to this. How do I tell her I know I don’t understand but that it’s affecting us all. That it’s putting her husbands health at risk, that if he becomes too ill then my sister will end up in some nursing home and her daughter will have no parent at home? She will just tell me to leave. I have suggested to my brother in law that he just organises help, because physically, there is nothing my sister can do about it. I suspect though life would be intolerable for him, even more so than now.

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I am so sorry you find yourself in this situation. All above have given you good advice. The only 5hing I would add. Your niece really needs to be told what is wrong with her Mum. Can you take some advice on how that could he achieved. Poor girl must be distressed and confused. Please try and take care if yourself. Your sister is lucky to have you. Anne

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Anne, yes, thank you. I agree so much with your comment. She is distressed and displays this in all sorts of ways, mainly being rude and aggressive and very defensive of her parents.

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Thank you all so much for taking the time to read my story and share your experiences and advice. I have contacted a friend who is a senior social worker and will meet him before the end of the week to discuss what options we have. I have also briefly spoken to my brother in law and am trying to convince him that, if my sister won’t allow an assessment to happen of her own needs, then he should get his own needs assessed. He appears to feel pretty hopeless about the whole situation and feels the only end he sees being that he will need to leave to force her into action. I hope we can do something before that happens. I know this will not make me popular with my sister, but I am doing it with the best of intentions, and because I love her dearly. I can’t begin to tell you how much just being able to share this story with people who understand has helped me. I wish I had found you all months ago. It’s just after 4 am and I think I might even get some sleep tonight. I hope you are all well x

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hope you can get your sister and her family some help.yes she might take it out of you,but just remember its for her own good.

J x

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Well, my brother in law went out today, after a lot of stress from my sister and my mum and I went to visit my sister. She can no longer sit up without falling forward, so she was lying in an easy chair type chair. Her mood seemed to have brightened when we went in, although she was convinced there was a buzzing noise that no one else could hear. I asked her how she was and she did everything she could to avoid the conversation going anywhere near me raising the issue of getting help in. When I did, she got incredibly angry and upset and told me it was nothing to do with me and told me to leave. I told her I wouldn’t. My mum told me to be quiet and I told my mum no. I told my sister I wouldn’t leave and that I thought she was being incredibly selfish to her husband, her daughter and our parents. She told me to stop talking and kept repeating that, “stop talking, stop talking”. I said its you who is talking. She started again and told me it was nothing to do with me. I let myself down by losing my cool and told her she was making her husbands life hell, that she was selfish and that if she didn’t do something about the situation then I would need to. I told her if she wasn’t careful then social work would do an assessment on her daughter. She told me they wouldn’t they had no right and that I should leave. Eventually mum and I did go. My sister was crying. I met my brother in law alter and he described to me his day. It’s starts around 5am when my sister awakens. She shouts at him to get her up. It takes him 3 hours to get her up and in her chair. She also weakens my niece, her daughter, up at this time due to the noise. My brother in law says he is always late for work, every single day. He gets home, he gets dinner, does the house work, catches up on any paper work he might have, as well as ensuring my sister has what she needs, then has to get her to bed. She won’t go to bed before 11pm, and it takes, on average, 3 hours getting her to bed. Which means he gets to bed at 2am. And this happens every single day.

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Dear Anna,

You are in a real Catch 22 situation - dammed if you do and dammed if you don’t. I feel for you, your mother, your sister, her husband and their daughter. You did the right thing in raising this issue with your sister. Perhaps some of what you said will get home. Your sister has enormous strength to be able to keep up her demanding and controlling behaviour. Can this be redirected to organising her own care “package”? Sadly I don’t know. Even retired social workers can’t always keep their cool especially with loved ones that we see hurting so badly. I’m one myself so I do know. I have PPMS and struggle sometimes with the amount of care my husband provides. He insists its his responsibility to care for me as much as he can. We made vows to care for one another when we married. Having Attendance Allowance does meet some of the extra costs we incur in being disabled. I will arrange my own Care Package when the time comes. Enough of me. This is about you and your family.

Of course your niece is confused - bless her. What a situation she is experiencing through no fault of her own. Would she be persuaded to join a Young Carers group locally? I’m sure their are other children and young people in a similar situation. She too needs support to be a young person in her own right. It would not be betraying her parents but giving her vent to her own troubles and help her understand how complex living with a severely disabled parent can be. Does she help her dad at all in looking after her mum? Or does her mum not allow her to?

All I can say at this point (note the early hour too!) is keep chipping away gently with your sister. She is the key to her own life and she is responsible for herself and her own family. Her strength is needed to change from her unhappiness and its effects on those around her.

I know you know these things but, don’t give up hope Anna. A crisis may be the only way your sister sees that things have to change. Just keep the door open to everyone who seem so scared but powerless to find find a way out for now.

Thinking of you and your family, Anne (Big hugs)

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Anna - You have made a big step forward by bringing all of your sisters problems - and the problems she is causing for her family to the fore. Don’t give up now - keep the momentum going. lf only she could be admitted into hospital - an assessment of her needs. Give her husband and daughter a break.

lf it goes on as it is - and her husband does move out - and who could blame him - [tell him that] - what will become of your niece and sister then.

l still feel her main problem is depression and low-esteem. To be so hateful - she must hate herself the most.

Don’t make yourself ill with all this worry - as it does have a knock on effect.

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Thank you so much for the support and advice. I have decided that I cannot give up on her, even if she has given up on herself. I need to do this for her, her daughter and husband. I honestly believe her husband will leave her once their daughters standard grade exams finish at the beginning of June, so I don’t have much time. When I left my brother in law yesterday, the plan was we would both go to her GP to seek help. My brother in law seems to have lost his nerve, so I will need to do it in my own. I will. I need to, I come onto this forum and read about the struggles of others with the same diagnosis and how you are all, individually dealing with them, and it makes me all the more determined. I know every single persons ms story is different, but I need to plow ahead and at least try and make a difference. I will try and get my brother and other sisters to support me, but know it might just be up to me. MS is a bstrd (sorry for the language), so cruel and unfair. And I am so angry at the moment

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Xx