This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi All,

I need some suggestions and I see here you have a strong community that seems to work well in helping each other. I hope you can help me..

My sister was diagnosed about 10 years ago. She moved back in with my parents in Toronto about 8 years ago so they can help care for her. She's now 42 and they are 70. I've watched my big sister's health and mental stability deteriorate over the years. My parent in their golden years (God bless them!) never even complain - but they are truly suffering with her and it's becoming more difficult for them. My mother hurt her back trying to help my sister get up from the toilet. Thankfully, she's recovered. But they live in this really big house that they can not maintain while also looking after her. They've literally dedicated the rest of their lives it seems to helping her. As a father myself - I can understand that. I don't think this can go on though as they are getting older and weaker and already struggle taking care of her.
My sister is living in pure misery. She's constantly being extremely disrespectful (screaming, swearing, insisting that she will soon be moving out, etc..). I'm sure that she has convinced herself that she is on her way to recovery and after all these years does not show any sign of accepting who she is nor what the rest of her life may look like. She literally never leaves the house. She's on the computer a lot - but doubt she has any sort of 'community' or friends since she seems to only ever complain and express her hate and disgust of her surroundings. She avoids seeing a neurologist unless a hit immobilizes her. Her limited interactions with neurologists are basically her delivering the diagnosis to the doctor insisting what she has is mercury poisoning from dental work 10 years ago that she's working on recovering. They've told my father they can't help her if she doesn't want to be helped (which is one red flag that I can use help with!) Their lives are truly miserable and I've stood by watching this for far too long.
I've been recently trying to feed the ideas to my dad that they either need to move to a smaller (handicap friendly) home. Or they need to move in with us (in Chicago and we'll buy a larger home). Or they need to find an appropriate facility to help take care of my sister. While my father is receptive to ideas - it seems like he's not really motivated to make any changes. I think they've just lived this way for so long that they can't imagine there could be a better way. I see some articles in the MS Society site about finding assisted living. I plan to call them to see what they might want to suggest as well.
I would love to hear from others on their thoughts or suggestions or anything really that might help me put some perspective on this.

Best wishes,
Lil Bother Geo

My sister did the CCSVI in Poland. 5 weeks later and not much of an improvement. My parents found a buyer for their house (being too big) but couldn't find an ideal house to move to - so they decided to stay put and try to focus more on figuring out ways to improve their living situation. They've been talking to someone from their local MS Chapter and I believe they're scheduling for someone to come out to examine the situation and hopefully suggest ways to improve their day to day life.

She's down to eating once a day and is quite malnourished. Her state of mind continues to worsen. She has no correspondence with any type of doctor. She quite obviously depressed.

What's most difficult to me is that she's alone with this disease. If she had someone in a similar situation that she could at least feel like she has a friend with something in common - I think that would help. Maybe it would be the first step for her to accept that she's not alone and try to live life with whatever struggles she has to face. I know 2.5 million people have this disease - but from what I can tell (around here anyway) - many of them still have a life! I can't help but to think - why the hell doesn't my sister have a life? What will it take after 8 years to come to terms with this and move on?

I guess my parents didn't realize there was even an MS Chapter in their area that could possibly help. Let's hope that they can provide some help. They're getting too old to take care of her, and to be quite honest - I don't want the verbal abuse in my house with my young kids exposed to that. As difficult as it is to say - I don't want anyone in my family to have to look after her and I can't see that changing.

I know you all have major challenges and I pray that no one will get to the point to where my sister is. I mean, what's the point if all you ever do is HATE?

God bless you all - best wishes,
Lil Brother Geo

Hello Geo,

Welcome to TIMS. I am very sorry your family is having to deal with this MonSter, as we sometimes refer to this disease. You are right... this is a strong community and I noticed that your first post got somehow lost in the shuffle and so after reaching out, you obviously never got any replies, unless by PM. That is too bad that we all missed your post.

It is so difficult to predict where this disease will take us and everyone has different things that we deal with as far as symptoms & emotions. Emotions are often very much affected by MS. I can in some way understand what you are feeling in regards to your parents dealing with this situation. My parents dealt with a sick son (leukemia), and had to bury their 19 yo son. Parents should never out-live their children - there is no greater pain, I'm sure. I am sure that as difficult as this is for your parents to deal with sis's condition, they would have it no other way. I am happy to hear that you/or they have made contact with the Society & I sincerely hope that they get some home care or some form of assistance. Is your sister on medication to help with depression? If not, that could be beneficial.... I was referred to a Psychologist by my neurologist when I was first diagnosed. This was done so that I had someone to go to if I was experiencing difficulty coping. I sat down with this woman 1 time, 5 years ago when I was dx'd, but she is a member of my "team", should I ever feel I need that sort of help. It may be something you may consider checking into, b/c she obviously needs help coming to terms with her dx, and may even be helpful for your folks in coming to terms with what is best for them and their ill daughter?? Not sure what else to offer. It sounds like her procedure has not been the answer either? I can say this - positive attitude is the best thing while dealing with almost anything in life and it sounds like sis is not really in that state of mind. That not only makes it hard for her to cope, but it makes it most difficult for all of the family to cope. I hope you find some help & you are so right to be concerned about your senior parents - they deserve so much more at their age. Take care & all the best in your search for help.

Deb

Thanks Deb. A few things you mentioned definitely help. I know my parents received from reading material on depression but they were not sure if it was the right path. Hopefully someone with some experience with this sort of situation is going to be helping them out soon. I'll keep you posted - thanks very much for your response.