This Is MS Multiple Sclerosis Community: Knowledge & Support

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Hello,

My sister that was diagnosed with MS 7 years ago, her symptoms are severe. She has been forced to use a motorized chair for a couple of years now and the disease is very aggressive.

For the last 2 years most of the information I have on her condition I have gotten second hand because she will not talk to me, answer my calls, my emails or letters.

Up until 2 years ago my sister and I were extremely close and I considered it a great relationship. Even after she was diagnosed we were very close. But that all changed when she and her husband came to visit me and my wife. During their 3 day stay she and her husband went through 4 one liter bottles of whiskey. Just the 2 of them. I couldn't do that if I tried and I'm healthy.

I couldn't believe it. As sick as she was her husband not only condoned it, but was the lead drunk. It was so outrageous I had to say something about it affecting her health etc etc, and her husband and I got into it. Since then the relationship has gone to hell.

Since the moment she began living the nightmare of MS I have done all I could to support her. I have flown to be by her side during testing and MRIs. I have given and loaned thousands of dollars, called continuously with support and love and took over a car when they they could no longer afford it and couldn't sell it as they owed more than it was worth.

My sister is not under a Doctors care, no medications, no therapy, no nothing and its been like this for sometime. She's literally wasting away.

She did take interferon in the early years but the side effects made her very ill. Now from what I am told she spends her day in bed or her chair, not able to walk or even use the bathroom on her own. The only thing she is interested in doing is traveling to Asia for stem cell therapy which is unproven at this point. Besides, they cannot afford it and are hoping for donations to get them there.

I'm heartbroken and don't know what to do.

I miss my sister and fear for her. She tells people her husband is amazing as he takes care of the home, and her, but she's getting worse and doing nothing about it. They still drink, although I have no idea how much. He doesn't work, she has no insurance and is isolating herself from the family that loves her. We can't even reach her by phone and the emails we get are one liners or quotes of scripture.

What the hell is going on? Is this normal behavior? Is her husband trying to kill her through neglect or is he just an idiot with a drinking problem and an allergy to work?

I have been trying for 6 months to talk to her, even offering via my father to travel up to see her. But she told me not to come that I'm not welcome.

Have I lost my sister? Is there nothing I can do?

brother...
Your situation is heartbreaking. I'm so sorry you are watching your sister wasting away, and are unable to help her. There are tremendous problems on many levels, you're right in all your observations. The alcohol consumed, the lack of medical attention, the inability of your sister and her husband to face life and her MS, to hold down jobs, deal with their finances. There is major co-dependency going on. And your poor family has to sit on the side-lines and watch, as your sister deteriorates.

My brother stopped talking to me for 2 years when I confronted him about his drug and alcohol abuse. We eventually made up and he dealt with his issues, re-married, got a good job and was doing well. He died in a motorcycle accident 2 years ago, at the age of 40. I am so glad we made peace, and I was able to share in his success....but it is bittersweet.

The reason I tell you this is because it was my brother who decided when and where to make peace with me. I had to wait until he was ready. While he was keeping me away from his life, I wrote to him, left messages and let him know I was there for him, sent him money, prayed for him. But I couldn't make him change...he had to want to do it. Thank God, he did. And we had five years to celebrate his recovery and successes before he died.

Your sister needs help, but only when she and her husband acknowledge this fact. Your family may eventually need to make an intervention, and show up on her doorstep together, but be fore-warned...it won't be easy. Are you close to her husband's family? Maybe they can help, too. MS can be a devastating disease, and it does change the mind...causing depression and personality changes. Her husband is not helping- he may have psychological issues as well.

My thoughts go out to you this morning....sorry to be so verbose, but I really feel for you in this situation. Hang in there, don't give up on your sister. You are a good brother-
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hello Brother2 -

My heart reaches out to you and your sister. One important side effect of MS is Depression. It sounds like your sister is self medicating with alcohol, and alcohol creates deeper depression. I too am wheel chair bound, have incontence too. How do I cope? here we go...maybe some of this can help you.

After I could not work anymore, I applied for Social Security. I was denied the first time but whe I reapplied my symptoms were so obvious that denial was not an option. One approved there was a one year waiting period before the bennies would kick in. Depending on your state, I was granted the state Health care program until SS kicked in. This allowed me to receive medical treatment. For MS, depresson whatever.

Your sister reads scriptures. Religion is a good coping skill. Having faith can alleviate the pain and suffering of the ones soul. Going to church can get her out of the house too, along with offering spirtual support. (the same goes with you) I jsut started participating in this forum and it is has become an at home support group for me. Furthering my purpose.

Other support can come from caregivers. I get at home physical therapy, at home personal care (bathing cooking cleaning) 2x's a week.

I have taken the emotional component of MS and put it in a locked box. I have accepted the fact that I have MS (doesn't mean that i approve it) This helps me to focus on other things instead of dwelling on it.

I just read Cheerleaders comments which are very true. - the co-depency thing. Also One can not force anyone to do anything unless they are ready. Maybe Planting seeds your sister might get a hint.

Take care of yourself so you will can remain balanced in this chapter of your life.

When I think of this the only way for you sister to change is for the ms to go away, what she is dealing with is incomprehensible to most and what she is doing is her way of dealing with loosing her life her dreams her everything. it is a shame that you and your sister are on the outs but you are the only that can make it better even if its only for you, your sister has to much now and forever to deal with. Some are good dealing with ms and what it does to you and some aren’t. Just love her and understand

_________________
Had ms for over 19 years now.

my 2cents (which are crap seeing as i know nobody involved), is that she is being abused.
he doesn't love her and is just a screwup. he loves himself and his habits and if she tries to change her ways he will come down on her.
even though they came to visit - when was that? - i wouldn't be surprised if he's deliberately isolating her... can you rescue a family member from an abuser against their will? i doubt it would be easy...
[quote]The abuser will control whom the victim sees, where she goes, whom she speaks to and what she does. This can take the form of simply not allowing her to use the phone, [to] have her friends round or visit her family, or ensuring it simply isn't worth it by being in a bad mood because she left some housework undone, making her feel guilty that she was out enjoying herself while he worked, or even encouraging her - theoretically - to make friends, and then discounting them or complaining that she cares more for her friends/family/hobby than she does him or is neglecting him. Some abusers may move home frequently to prevent their victim from building a social support network.
Many abusers justify their control over their victim by stating that it is proof of their love, or that they worry about their safety when out, etc. In reality however, the abuser needs to isolate his victim to feel secure themselves, they feel as though any relationship, be it family, friend or colleague, will undermine their authority over and take their partner away from them, i.e. poses a threat. The effect of this isolation is that the victim feels very alone in her struggle, doesn't have anyone with whom to do a 'reality check', and is ultimately more dependant on the abuser for all her social needs.
Forms of Isolation include:
* checking up on you
* accusing you of unfaithfulness
* moving to an isolated area
* ensuring you lack transport or a telephone
* making your friends or family feel uncomfortable when visiting so that they cease
* punishing you for being 10 minutes late home from work by complaining, bad moods, criticism or physical abuse
* not allowing you to leave the house on your own or taking away your passport
* demanding a report on your actions and conversations
* preventing you from working
* not allowing any activity which excludes him
* finding fault with your friends/family
* insisting on taking you to and collecting you from work
[JL: and may i add, encouraging you to stay on a health trajectory that leads to your even greater dependency]
In extreme cases the victim may be reduced to episodes of literally becoming a prisoner, being locked in a room and denied basic necessities, such as warmth, food, toilet or washing facilities. Other family members or the perpetrators friends can also be used to 'keep an eye on' the victim, acting effectively as prison guards.

Thank you all for the replies there's much to think about.

Hi brother.

My sincere sympathies for what you are dealing with.

The fact that she is not taking any medication for MS is not necessarily bad. None can really alter the history of MS. Just side effects...

Depression can be an issue with MS. It is quite reasonable to be depressed when your whole life becomes an obligatory procedure to the grave. From my experience, drugs for depression can bring a temporary relief, but their side effects, such as weight gain, will only make it worse in the long term.

Keep in mind that there is nothing that can be done for her physical condition. Stem cells are not the solution to the MS puzzle. They are a "sometimes" temporary relief, but the symptoms will only come back after a brief amount of time.

Given all these, consult a specialist, be it a psychologist or a psychiatrist. She urgently needs emotional support. But so do you. Only a specialist can make you understand how to "gain access" to her locked self and her ruined self esteem. Please, do it ASAP.

sou

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Hi Brother,
You are obviously not going to get through to her at this time. The more you push her the more she is going to avoid or not speak to you.

The best thing I think you can do is put together some information on some of the treatments available (i.e diet, LDN, copaxone) and maybe direct her to some of the helpful websites and say that you will leave her to get on with it all, if she needs you you are there for her but you can't make someone change or acknowledge things.

You have to tell yourself that you have tried your best whatever happens, she is a grown woman with a husband and you are not responsible for the decisions she makes. You have done your best and you have to just be there for her and support her if she wants you to. Its frustrating but there is nothing else you can do.

All good suggestions. Except for the money part. Alcohol is a drug. Alcoholism is just another word for addiction. Sending money to a practicing addict is as good as pouring gasoline on a fire. It is often a fine line that one must walk between helping an addict and enabling them.

I agree with the intervention suggestion. From the limited information that you have shared, they sound like candidates for an addition recovery program as that which can be offered through a treatment center.

Unfortunately, she may not do anything about her health until she has started to deal with her addiction. ... and that is not easy. Addiction is one of the few diseases that convinces you that it's ok to wipe your crap covered work boots all over the love of others as though it was a worn out door mat. Recovery from addiction is possible but it starts with complete abstinance from all drugs. Only then does an addict have the opportunity to come to the realization that there's a different and better way to live.

NHE

brother2:

This is an incredibly difficult situation, made worse by the fact that your sister has MS. It's not clear that she's definitely an alcoholic from you from your post; but based on your instinct, you can probably make this determination. It definitely sounds like her husband has an abuse problem, and she's in a co-dependent relationship.

Doing an intervention has been mentioned. These can be effective, but you should know that an intervention has a pretty specific meaning in addiction terms. It is done with the help of an addiction counselor (who usually attends), and is well rehearsed beforehand. It is also usually a last step; whatever ultimatums you give, have to stick.

You can consider this. In the meantime, maybe you should enlist the help of family members; make sure everyone is on the same page. Then visit her in person, with some other family members (I know you mentioned having to fly to see her, and this isn't easy). Lay out your concerns, how much you care about her. But don't accuse and don't (overly) criticize her husband; this will only make her defensive and unresponsive. You might also talk to a addiction counselor for advice on how to approach your sister. If you work has and employee assistance plan, you find one through this. Otherwise, you can try the local hospitals.

I wish you the best.

The reason she is doing what she is doing is because of ms, she is just making easier for her to deal. This is one of the problems with the perception of ms, it's not just walking with limp or numb fingers its ruining lives and doing an intervention is crazy. Will an intervention cure her ms, will it get her out of her power chair ,come on.

_________________
Had ms for over 19 years now.

Robbie...
You may very well be right. You're further down the path, and you understand the tragedy of losing your independence. I totally respect your view, and love you for this honesty. Brother may need to get to this place of understanding.
BUT...there is a lot more going on in this situation, and none of us really know these people. We're just all talking from our own personal experiences. And mine is that I'm really glad my brother was clean and sober when he left this planet, and that we were good. Maybe that's selfish, but it's all I know-
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Robbie:

I agree that what she is doing is because of the MS. And what I wrote was meant to address the alcoholism/unhealthy relationship issue. I know this won't do anything for the MS. But I don't see how she can do anything for her health living the way she is. Maybe brother2's sister feels she is too far gone with her MS, that it doesn't really matter anymore; might as well drink the days away. But he wrote:



Even if nothing can be done for the MS, trying to get her out of this situation can only be a good thing.

Real helpful.