Wellness

[shwarma]

You are in such a desperate position. Care is needed. What would her reaction be if you asked her to be her medical advocate, legally? Trying to find help for her without a legal agreement will not be possible. Taking care of a loved one is a 24 hour concern. If she sought help she might be eligible for disability assistance. I pray you will find a solution. Remember you are doing your best to help. You need to also watch your health! Does she have a minister she might listen to? Trying to give suggestions. 

[RedTop]

@Junker2327 

I am very sorry your sister is in this position.

I am also very sorry your sister didn't take the suggested medication for her MS in the early stages when the disease was in a silent phase as far as active symptoms, but still quite active within her central nervous system.  Much of her anger now is realizing she didn't do all she could to help herself when she had that open window of opportunity.  

The key to MS is in early diagnosis, and treatment, in an effort to control the progression of symptoms for as long as possible.  Once the symptoms reach the level your sister is in, there's no getting control, no turning back.  It's progression of problems until the end, which may eventually include kidneys and lungs and the problems with multi organ failure.  

I have a friend who was diagnosed with MS in the last 10 years.   Her first symptoms were with balance, fatigue and tremors, but she still drove and managed to do for herself, and her family during this stage.  Within the last 4 years, there has been a gradual worsening of her overall condition; her eyesight has changed to the point she can no longer drive, her fatigue is a constant issue now, she cannot stand for any length of time because of generalized weakness and no balance.  She is in a wheelchair and declining steadily, but is in her home with family.

I can well understand your sister is not in a good place mentally or physically.  She must get a plan in place for the future while she has the mental presence to make those decisions, or accept that she will soon reach a point where decisions will be made for her, because will be unable to make them for herself.   

I send you prayers of strength.  

[chrystaltree]

Your sister refused treatment, she chose to stick her head in the sand and pretend she didn't have MS.  So she's paying the price for that now.  You need to step back and stay out of it.  You can assist her in any way that you want but you should not feel that you are responsible for her.  Don't think you must be her caretaker.  If you curious about the disease, do a Google search for general information.    I know a person with MS,  a work friend that I knew for 20 years.  She was mid 30s when it was diagnosed.  She took advantage of various treatments over the years.  Her symptoms would go into remission for a year or two and then come back but she started some itype of iv medicine a few years ago and has been symptom free since them.   She gets  the iv meds 2 or 3 times a year.  

[Jhincher]

My husban had MS forty years. He started falling in 1972 and it was the start of MS. He used a cane until 1979 when he went to crutches. He went to a wheelchair in 1886 and bed bound in 2010-2012. He had the chronic progressive type and took Betaseron shots every other day until they started breaking his skin down. He was never angry about it and had such a huge faith. He did have crying spells a lot, but his doctor put him on Prozac and that helped a lot with that. He was affected mostly from the waist down, his arms stayed strong until the end. He passed with septic pneurmonia. Your sister has a different type. All types are the immune systeem turning on it self, destroying the coverying on the nerves.  With an MRI, it should show plaques on her brain and spinal cord, they showed up as little white sports on my husband's MRI. My husband did not get the IV solutions, they were not for the chronic progressive MS he had. You can google MS and learn a lot, wish I could help you. I did just want to tell you my experience with it. My prayers are with her and also you, it is hard to watch a loved one go through this. You hurt for them. God Bless!!

[Jersey Born]

@Junker2327 - I am sorry you are going through this emotional rollercoaster of wanting to help your sister get the medical help she needs, but not being permitted to help her.  The truth is that there is nothing you can do to help your sister if she rejects your help.  Nothing. You should not blame yourself or your sister. Your sister has the right as a legal adult human being to make her own healthcare decisions, and she has made them. Whatever happens to the course of her progressive illness due to her medical decisions is 100% on her, and rightfully so. 

I would send her some good quality Curcumin supplement to take along with some Vitamin D3, as these may lessen some of the inflammation in her body. It would be up to her to take them, of course. 

Sometimes we cannot help the people we love.  They have the right to self-destruct and choose paths that we do not understand and would not elect to take ourselves. 

Wishing you peace, and your sister the strength to determine to get some type of medical help or assistance from others. Just be sure to tell your sister how much you love her.  That will give you some peace during this trying time.

[IMW]

So very sorry for your sister and for you.  She refusing

to deal with her reality includes locking you out.

Not a lot for you to do the way things stand now. You've let her know you're there for her.

Try to find some peace for yourself, take care of you.

You didn't cause this, you are not responsible. 

[Mindy D]

@Junker2327 @Besides trying to help your sister psychologically and getting a caregiver, you will really be helped by increasing your knowledge about the disorder. This can help you make sense of things. I strongly suggest you take time looking over the information on the types of MS and all the treatments available at ms . Org. There is information about the frequency and types of ongoing assessments that are needed as well. There is also information about home  care and information about resources. Take the time to arm yourself with knowledge. You might come up with more ways to help your sister if you know what will be needed. I don't know if you live near your sister. That would be great if you do. Don't give up trying to break through. There might be a need for special hone equipment that can change over time, Finding live in care could depend on the type of MS your sister has and her response to treatments. I send you my heart felt wish for success in getting you and your sister to work together. Try looking here. https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwjci_So0O_3AhUnc98KHU91AooQ...

[Growing]

I am so sorry and I hear your distress. You are a caring and loving person, I can hear it in your posting. My suggestion is to change how you think about this. How you are dealing with her at this time is not working for your own emotional wellness. She can not change at this time but you can change how you think and react. The more distressed you become, the less you will be able to help her whenever the time comes she is ready to change. If ever. 

Do you know the Serenity Prayer? Accept the things you cannot change. 

You do get to set boundaries about her anger if she is directing at you and getting nasty. The boundaries are your decision on what ugly behaviors you will allow someone to do to you - the rules you set for yourself not the rules you tell her she must follow. 

While you can't change her, you can limit your interactions with her if you need to. Yes, you love her and yes she needs you but you can't allow her to destroy your own happiness and peace of mind. 

You can call the adult protective service in your state if your sister is a danger to herself. 

Try responding to her feelings that she is expressing. When she is angry about falling out of her wheelchair, say back to her something that recognizes her feeling but doesn't give advice. Most of us would say "you need to be in a facility where there is help when you fall" but try something else "Oh, I am so sorry to hear that, you sound very upset" - or sad or angry. When she is crying, respond to her feeling "you sound so sad or unhappy". This shows you validate her feelings. She doesn't have to push back against others who want her to change, get more help, accept her diagnosis, etc. Don't give her any suggestions for change and she won't have to push back in anger against those suggestions. 

Perhaps consider a support group for yourself, even an online one, or individual counseling for yourself to learn coping skills for this distressing situation and to have a person to talk to about it. Take care of yourself, too.

[qualitygal]

You need to consult a physician who can tell you about the disease.  There is info on line too.  Many sources for many illnesses, do see what they say too.  Everyone is different, but you'll get some insight, you need.

I too see what a family member had happen, when he refused to take meds, when he should have.  They are younger, feel great and all the while, the diseases are wrecking havoc on their bodies, and you can't see.  It comes crashing down and it's the body that pays.  

It's bad.  Good luck to you.

[Cakers3]

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@chrystaltree wrote:

Your sister refused treatment, she chose to stick her head in the sand and pretend she didn't have MS.  So she's paying the price for that now.  You need to step back and stay out of it.  You can assist her in any way that you want but you should not feel that you are responsible for her.  Don't think you must be her caretaker.  If you curious about the disease, do a Google search for general information.    I know a person with MS,  a work friend that I knew for 20 years.  She was mid 30s when it was diagnosed.  She took advantage of various treatments over the years.  Her symptoms would go into remission for a year or two and then come back but she started some itype of iv medicine a few years ago and has been symptom free since them.   She gets  the iv meds 2 or 3 times a year.  

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@chrystaltreeWell good for your work friend.

FIrst, she is receiving Ocrevus twice a year.  Ocrevus is not a miracle drug but it is used for RRMS, PPMS in adults,  and active secondary progressive MS in adults.

MS is a very fickle disease; what works for one may not work for another or not work at all.

Your opening sentences lack empathy and complete ignorance of this disease.

I know what I am talking about.