PLEASE HELP. Need advise about sister with MS.

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

nicekitty
New Member


Date Joined Feb 2008
Total Posts : 5
   Posted 3/10/2008 3:12 AM (GMT -6)   
My sister is having problems right now with her legs. She was diagnosed almost 10 months ago with MS. She is terribly fatigued and for the past 5 days, her legs have felt like "lead". She had been doing well for a while, but now she seems to be having a relapse. She gets no support (emotional or otherwise) from anyone in the family but me. She and her two children live with my mother, another sister and one of my brothers. She is 33 years old and has never left home. She has always taken care of the rest of them; now that she is sick, no one gives a darn about her. They verbally abuse her and expect her to do all the cooking and cleaning and they also verbally abuse my two nephews, telling them that she is sick because her brain is rotting. If she does not cook and clean for the rest of them, they all go out to eat on their own and threaten to kick her out of the house, and my two nephews go unfed and uncared for.

My adult sister and brother make no financial contribution at all to the household, but that is just fine with my cruel mother. The only person who is required to make a contribution to the household is my sister with MS. She is expected to give my mother all of her money, while my two siblings squander their money on alcohol, clothes, and whatever they choose. Most of the time, she runs out of food stamps that she gets for herself and her two children because my mother, brother and other sister all feel entitled to eat without buying any food. So two weeks into the month, she'll has nothing to feed her children but bread and macaroni and cheese.

My mother tells her that her disease is what she deserves from God. My mother and brothers were horribly abusive to us (physically, sexually and emotionally) when we were growing up. They are no longer physically and sexually abusive but they are still so cruel. She feels stuck because the father of her two children was murdered 5 years ago and she gets only $750 per month in disability, plus a few hundred dollars of social security death benefits for my nephews. She lives in New York City where it is impossible for a single person to live on such a low income let alone three people.

I think the physical and psychological pressure of the environment is making her MS worse. I don't see any hope of a recovery unless she gets away from them. Last night, she was so tired that she could barely talk. She had asked our sister to do her grocery shopping for her. Our sister refused, although she had no plans, so she had to go to the store herself. The walking exhausted her so much that when she got home, she had to go straight to bed. Of course, when she got home exhausted, our sister had eaten the meal that she had prepared for her two children before she went shopping. There was no food left for her and my nephew made her a sandwich which she was too tired to eat.

I am so distressed by this situation. I want to be there for my sister, but I cannot go to NYC to be with her. I live in upstate NY. I want her to come to where I am so that we can live together. I love her two children and I have no children of my own. The only problem is, I have no money either. I am on disability for psychiatric problems which my therapist believes were triggered by the terrible abuse I suffered from my family as a child. However, I am not violent or cruel and I have learned to control my condition with medication, therapy, and hope for a better life, including going to school very part-time(one or two courses at a time). If I dared to go back, I would suffer a breakdown. My sister realizes this and tells me not to risk my mental health by coming back.

I was thinking that my sister and I could pool our disabiluty resouces and live together as a household. The cost of living is much cheaper in upstate NY than in NYC. That way, we could be there for each other and her children. I am all alone in upstate NY and besides my mother and cruel siblings, I have no relatives and I have no boyfriend. I have always wanted children in my life but at 39, I accept that I will never give birth to children of my own and I do not have the resouces to adopt. So having my nephews in my life would be a joy not a burden. My sister likes the idea but we need to find a way to make it happen.

I would like an opinion from anyone who wants to offer it. My sister and I have always gotten along well and when I was in college, she spent her summers with me. She does not expect life to stop because she has ms but she does need love and support and the knowledge that someone will be there for her chidren. Also please share with me what medications and nutritional therapies have been helpful to you so that I can help to inform her of options. sad

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 3/10/2008 8:17 AM (GMT -6)   

Given what you described here, I'd think it would be better for both of you to indeed pool your resources and live together, away from the rest of your toxic family.  She'd need to find a doctor in your area, but since you are already there, that wouldn't be impossible.  How old are the children? It might be good to let them finish up this school year and move over the summer. That few months would also give you time to investigate what other resources might be available to them and to you. Some states have subsidies for people without resources that go beyond the basic social security; have you looked in to food stamps, subsidized health care, those sorts of things?

I can't and won't speak to "nutrituional therapies". If you research the internet, you'll find lots of "diets" and "supplements" that are supposed to help. I am a firm believer in simply eating a balanced diet, with emphasis on fruits and veggies, fish, and not a lot of red meat...a basic "good for your general health" diet, and exercise.

As for MS treatments, do you know if she is on anything now?


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


nicekitty
New Member


Date Joined Feb 2008
Total Posts : 5
   Posted 3/10/2008 7:06 PM (GMT -6)   
Thanks for the reply uppitycats. I came home this afternoon to find a distress message from my sister. She said that she could not hold on anymore, and that she was meeting her neurologist at the hospital near where she lives in NYC. He was going to see what he could do to help her feel better without hospitalizing her, but he could not guarantee that she would not be hospitalized. Her voice was so full of pain that I wanted to cry. She told me that she loved me, and said that she knew how much I loved her.

I have not been able to reach her since I got her message 4-1/2 hours ago. I believe that she has been hospitalized. I know she would not have risked being away from her children were her situation not unbearable. I want to reassure her that she did the right thing. I am sure that my mother and siblings will keep me in the dark and not return my calls because they know how much I love her and want to be there for here. I do not have the number of any of her friends, so I can't call anyone outside of my family to get information. So I will just keep calling and waiting until their hardened hearts choose to respond to me. I will never give up on her. I have advised her to keep our possible plan a secret until it is too late for them to thwart it.

My therapist thinks my plan to have the four of us together is a good one and would be good for me as well as my sister and nephews. I agree with you that they should finish the school year, if at all possible. She has two boys, ages 9 and 12. I am going to seek information about a housing subsidy (section 8). I currently have one for myself, but I don't know if it can be expanded to include them if we lived together. And also, I would have to find a place that sells inexpensive used furniture, as we would not be able to afford the cost of new furniture for a new household. But my therapist says that he thinks we can make it happen somehow, especially since we are biological relatives and it is not unusual for someone to live with and care for a sick relative. There are three-bedroom apartments in the apartment complex in which I now live in a very quiet and safe town. She would be able to get treatment with her medicaid at the medical school in Syracuse (which is better than the low income hospital where she gets treatment in NYC). And I wouldn't have to worry about her becoming a victim of crime in my town because of her physical disability. The schools are close to where I live, so the children would not have trouble getting to school.

But my therapist says that I must not pressure her, but allow her to realize that what I am offering her is much better than what she has right now and will place her in a loving, supportive environment. She was not currently taking anything, to my knowledge. She had been on a whole bunch of medications for a whole bunch of symtoms (vision and bladder problems etc) but was having problems with them. She is seeing a couple of doctors and they don't care about medicaid patients like my sister. The neurologist had prescribed betaseron but I think she had horrible side effects and was afraid to continue.

The truth is, MS is nothing to dance with. None of the medications have been around long enough to prove that they prevent disability in the long run, and they certainly don't repair the damage done by the disease. I am not a doctor, but I am pursuing a graduate degree in biochemistry, so I actually have a lot of the same knowledge as doctors. After all, these drugs were invented by scientists, not physicians. The only hope is to repair the damage done by the disease and I really don't think that we will figure out how to do that in my or my sister's lifetime or with a prescription drug. In the past, before my sister was afflicted, I knew people who had MS and went into remission without any prescription drugs, so it is not possible for any doctor or drug company to claim that any particular drug is the sole or primary cause of remission of the disease in everyone who takes the drug. But I will accept that some of the drugs may help some people, and I am happy for those people. Thank you for responding. I am trying hard to remain optimistic and look forward to brighter days.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 3/11/2008 8:32 AM (GMT -6)   
No, MS is nothing to dance with. I've had it for 25 years and gave up dancing a long time ago. But if you are a biochemistry student, you need to do more homework on the medications for MS. How long do you need for them to be "be around" to "prove that they prevent disability in the long run"?? Betaseron and Avonex have been around for 20 YEARS, maybe longer. Rebif for 15 or or so. Copaxone for at least 8. No, dear, you do NOT have "a lot of the same knowledge as doctors", at least not yet, not until you are no longer "student" and actually have a degree..and a degree in MEDICINE, not only biochemistry. Physicians ARE scientists...and some scientists ARE physicians.

There are TWO "hopes" with MS: one, to lessen the disability and damage (which these drugs do), and the other, indeed, to figure out how to repair the damage that has already been done in some of us.

I don't think ANY doctor or drug company claims that any particular drug is "the sole or primary cause of remission". But they HAVE PROVEN that the drugs help some people. Some people do better on one drug and not another...how long did your sister stay on the Betaseron? Long enough to see whether indeed it WAS working -- like 9 months to a year? Or did she decide that the initial side effects were too onerous to continue?

Yes, I'm annoyed with you. Your attitude won't help your sister much, if you claim to know more than her doctors, claim to know more about MS than she, and base your "knowledge" on "knowing people who had MS and went into remission" and therefore so should your sister.

Good luck with your plans. I still think it better you and she (and her family) live together, away from the others. But I also hope you do some better investigation about what MS is, what the meds might do, and be able to offer her some better support in that area as well as in her living arrangements.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


TintríCroi
New Member


Date Joined Feb 2008
Total Posts : 16
   Posted 3/15/2008 7:09 PM (GMT -6)   
I think the most important thing is not to have a "can't" or "won't" attitude. I can understand that sometimes things can seem insurmountable but they cannot get better unless you're willing to try now and then. Having a closed mind only eliminates possibilities that can really help in the long run as well as the short run.
 
If you've taken biochemistry, or anything remotely medical, you should know that, sister or not, dismissing possible treatments right away like this is not within your scope of practice and to really believe you have "the same knowledge as doctors" is destructive.

Post Edited (TintríCroi) : 3/15/2008 7:12:20 PM (GMT-6)

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, October 23, 2017 6:49 PM (GMT -6)
There are a total of 2,886,331 posts in 316,704 threads.
View Active Threads


Who's Online
This forum has 157796 registered members. Please welcome our newest member, Rjfdgkde.
953 Guest(s), 18 Registered Member(s) are currently online.  Details
cupcakespinkgal, bhorvat, notsosicklygirl, 0311, Dahlias, countess18, Michael_T, pasayten, ArtAngel, The Dude Abides, Dr Gearhead, statback, gabybee, Gutsycal, mareish, Labradorite, straydog, NeedUChelp


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer