topic Re: Sad experience with MULTIPLE SCLEROSIS in Wellness

Sad experience with MULTIPLE SCLEROSIS

Junker2327 — Thu, 19 May 2022 04:29:38 GMT

My sister found out several years ago she had MS. She refused all meds and treatments since it wasnt affecting her at the time. She has just retired from her job a year ago and the MS has savaged her with a vengence. She still refuses to believe it is MS. She has been to many specialists and they have all told her the same thing. She bought this large house right before retirement and was getting settled in when this started. In a little over a year she has gone from working full time to not being able to walk at all, drive, cook, clean, or even take a shower on her own. She is crying all the time. Its so incredibly sad. She is only 50. She is constantly falling out of her wheelchair and having to call EMS to come pick her up off the floor. Her hands have completely curled up. She can barely use her phone. She keeps adding things to her home such as ramps, walk in tub, 2 kinds of wheel chairs to try and reach her kitchen counters and now a bidet. No one can convince her that she cannot be alone any more. She has her groceries delivered, a housekeeper, a yard guy, someone that comes and does laundry and still it is not enough. No one in the family can talk to her because she is violently angry about it. I dont know what to do to help her. Its sickening. Her condtiion all went south in just a years time. I dont know if this disease has a prognosis or not. I do not know what stage she is end but IMO she would be in end stage. Has anyone experienced anything like this. She wont let me talk to Dr. DOes anyone know anything about living with this disease. I need someone to talk to about it as I am mentally exhausted on what to do next. we have suggested assisted living or a live in person all she does is cry. The thing is, her mind is all there. I am sad about this and dont know how to help her.

Junker2327

Re: Sad experience with MULTIPLE SCLEROSIS

colleena — Thu, 19 May 2022 04:52:23 GMT

@Junker2327 Sorry to hear this about your sister & the little I know about MS this does sound like that is what she has.

It's easy for me to say but if your sister is violently angry & refuses to get treatment there's not much you or anyone else can do - it's up to her.

I know it's hard but hang in there, don't beat yourself up & be there if/when she is amenable about getting help. Good luck.

Re: Sad experience with MULTIPLE SCLEROSIS

On It — Thu, 19 May 2022 04:55:27 GMT

@Junker2327 I do not know what to say or do about her refusal to allow treatment. It seems your sister may need a psychologist to intervene and help her come to grips with the reality of the situation. This must be horrible for you and your family as well as your sister. I hope she gets the help she needs.

Re: Sad experience with MULTIPLE SCLEROSIS

Sooner — Thu, 19 May 2022 04:56:43 GMT

@Junker2327 I feel your pain and frustration. One of the most difficult aspects of dealing with older parents is that often they make terrible decisions and it's nothing you can do something about if they aren't where they could be declared incompetent.

I don't have any advice for you, just sympathy and saying that some things are beyond our control, and we have to simply live through it and remember that people make bad decisions sometimes and there things on this earth that you can't fix.

Re: Sad experience with MULTIPLE SCLEROSIS

FancyPhillyshopper — Thu, 19 May 2022 05:05:48 GMT

I am very sorry to hear about your sister. I am sure she is angry and in shock at the failure of her body to deal with this terrible illness. Yes, she is very young to be suffering so much, and was probably just not mentally prepared for the severity and the speed of the symptoms.

Mayo Clinic has some information about this disease which can help us learn more:

https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/diagnosis-treatment/drc-20350274

If she is constantly in touch with you, she is seeking support. Perhaps she will go to see a doctor if you go with her. I agree that a live-in person could be a real boon. Perhaps she could interview some people and then she would feel more comfortable with the option.

I know you are worried, but do not let yourself become mentally overwhelmed. Your sister needs everybody's help now, so you need to be strong for her and help her create an action health plan. According to research, people with this disease do not necessarily die from this disease, so she needs to look to a future and figure out how to best meet her physical needs. I will keep both of you in my prayers and send my best wishes.

Re: Sad experience with MULTIPLE SCLEROSIS

Goodie2shoes — Thu, 19 May 2022 05:09:43 GMT

My heart goes out to you and your family. Unfortunately there appears not much you can do since she is mentally alert. Maybe looking into contacting a support organization like the National MS Society who can give you information on how you and your family can deal with your sister and how to get through to her. Once you can get through to her if at all possible then maybe she will allow their help as well. Keep us posted on your progress with getting her the help she needs. Prayers and blessings to you and your family !

Re: Sad experience with MULTIPLE SCLEROSIS

Flatbush — Thu, 19 May 2022 05:24:49 GMT

@Junker2327

This is such a sad story. I don't know how close you live to your sister, but maybe limiting very frequent contact with her, (not mentioning the illness), but still keeping in touch will make it a little easier for you.

Sending a card now and then, telephone calls to let her know you are still thinking of her might bring her some comfort.

There is little to nothing you can do while she is in this deep grief and depression she must be feeling.

You will most likely find information on the internet that can help with any questions you may have.

I wonder if some on line MS forums with those afflicted can help you with information on how to approach your sister.

Sending you my thoughts and good wishes that she will be in a more compromising, accepting place re: her illness ( in time).

Re: Sad experience with MULTIPLE SCLEROSIS

Beauty$Junkie — Thu, 19 May 2022 10:52:57 GMT

I am so sorry about what your sister is going through. You may want to look at resonance frequencies? Spooky2 has even got many YouTube frequencies that may help her. Praying for your family.

Re: Sad experience with MULTIPLE SCLEROSIS

AspenGrove — Thu, 19 May 2022 12:34:43 GMT

@Junker2327- I’m so sorry you are experiencing this. As someone who experienced something similar, I would urge you and other family members to become a united front and force help for your sister.

Several years ago, myself and my siblings had to do this with our elderly father who was in complete denial about health issues and needing meds and assistance. We sought advice from his physicians and mental health advocates—each of whom had seen this same thing umpteen times and therefore were a great help. They each explained that his denial, anger, bitterness, etc. was an expression of utter fear and a silent cry for help.

And so we swooped in and organized in-home care, as well as specific plans for meds, treatment, etc. He’s fully mentally competent and therefore chose the in-home person, along with us, of course. He was and still is part of the decision-making continually. As soon as we took control and made it clear that we were there to support him and weren’t ever going away, his entire attitude changed. He’s still grumpy from time to time, of course, but he’s thankfully now onboard with his own care and knows that we love him and are there to help.

About a year after everything was initially in place, he casually said to me on the phone one day, “I’m so glad you guys stopped me from having temper tantrums and are taking care of your ol’ dad.” Phew. Me, too.

Sending all good wishes to your sister and you during this really difficult time.

Re: Sad experience with MULTIPLE SCLEROSIS

eyeron — Thu, 19 May 2022 12:35:06 GMT

I am sorry your sister is going through this. The fact that this came on so suddenly (after years of having having little or no symptoms) made me wonder if it can be something other than the MS. Has she ever been tested for Lyme disease? (late stage) You don't have to see the tic or get a bullseye rash to get it. It can mimic the same symptoms of MS and one can become extremely dibilitated. I am not trying to suggest she doesn't have MS but at this point it can't hurt to rule out other things that may be causing such an acute attack this past year- in addition to her MS.

Re: Sad experience with MULTIPLE SCLEROSIS

shwarma — Thu, 19 May 2022 18:46:07 GMT

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.

Re: Sad experience with MULTIPLE SCLEROSIS

RedTop — Thu, 19 May 2022 21:36:52 GMT

@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.

Re: Sad experience with MULTIPLE SCLEROSIS

chrystaltree — Thu, 19 May 2022 21:59:26 GMT

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.

Re: Sad experience with MULTIPLE SCLEROSIS

Jhincher — Fri, 20 May 2022 01:46:49 GMT

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!!

Re: Sad experience with MULTIPLE SCLEROSIS

Jersey Born — Fri, 20 May 2022 13:02:14 GMT

@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.

Re: Sad experience with MULTIPLE SCLEROSIS

IMW — Fri, 20 May 2022 13:07:12 GMT

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.

Re: Sad experience with MULTIPLE SCLEROSIS

Mindy D — Sat, 21 May 2022 03:35:02 GMT

@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_3AhUnc98KHU91AooQFnoECAoQAQ&url=https%3A%2F%2Fwww.nationalmssociety.org%2FWhat-is-MS%2FTypes-of-MS&usg=AOvVaw3On1ef2aSIffyZFhUcWRyD

Re: Sad experience with MULTIPLE SCLEROSIS

Growing — Sat, 21 May 2022 15:53:04 GMT

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.

Re: Sad experience with MULTIPLE SCLEROSIS

qualitygal — Sat, 21 May 2022 17:08:46 GMT

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.

Re: Sad experience with MULTIPLE SCLEROSIS

Cakers3 — Sat, 21 May 2022 18:32:19 GMT

@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.

@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.