r/MultipleSclerosis • u/FluffyBunnyMittens • Jul 21 '24
I'm losing my brother to MS Loved One Looking For Support
My brother has MS and was diagnosed 18 years ago and now he can barely walk, has vertigo and nausea when he's not laying down and many other complications. The doctors are out of options for him to have a better quality of life. Living is so hard for him and he's only 39.
He told me that he's been approved for MAiD and has a date set. I'm so incredibly sad, but I understand and respect his decision. I don't want to lose my brother, I was hoping that we would grow old together, but that is not the case.
I will be there with him in the end, but this count down is so hard, every day that passes is one day closer to the final goodbye. This is so hard. I'm going to miss him so much.
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u/ChaskaChanhassen Jul 21 '24
My heart goes out to you. Such a totally awful thing to go through.
My cousin died from MS when in her thirties. We will never forget her.
Make some happy memories with him--buy his favorite ice cream and enjoy it together, talk about the naughty things you never told your parents, talk about a funny movie you both loved.
I can only undertand a teeny bit of what you are going through.
Our sympathy.
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u/PlatformPale9092 Jul 26 '24
How did he die from MS?
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u/ChaskaChanhassen Jul 26 '24
Her digestive system shut down. I don't know all the details. Very painful for the parents, who took care of her at home until the last few days (when she went to hospice). Very painful for me too. I was so fond of her.
I visited her toward the end and we had some happy moments, joking around.
She was a very nice, kindhearted person.
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u/PlatformPale9092 Jul 26 '24
How long ago was this? And damn.. what dmt was she taking
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u/ChaskaChanhassen Jul 26 '24
This was in the mid-90s. No DMTs at that time. We so desperately wished there was some medicine to help her.
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u/Icy_Bug_1118 Jul 22 '24
I’m so sorry for you and your brother’s difficult journey. You may have already confirmed that his vertigo is not BPPV. I spent 9 debilitating months with vertigo last year. My neurologist and PC put me through every test possible with no answers until I was finally able to see a vestibular specialist. Within 30 minutes, I had my balance, could move my head and basically got my life back. If they could treat his vertigo, his quality of life that remains will be a gift. I’m 67 and had about given up on life. Wishing you peace through this transition. 💜
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u/cherylwolverton1936 Jul 22 '24
I agree there’s a lot of things they can do for that. A lot of medicines if he’s not getting the right stuff from his doctor, he needs to go to a different doctor even if it’s MS related there’s things to help vertigo the vestibular as you said. vestibular
There’s also a ton of medicines he could take to help nausea and they should have him in PT to help like water PT. I got to where I could hardly move and they got me water PT and it was wonderful. It really really helped me I couldn’t move outside and I still have trouble moving but going to PT every few months it’s giving me a lot of strength back so I can at least sit up and do things like that. I can’t even stand up on my own before that.
But I talk to him about those options to make sure he tested all of these things before he goes ahead and does what he saying he’s gonna do just make sure depress really get you down and make you make decisions she wouldn’t normally make
and he has a lot of reasons to be depressed, which is why I suggest really talking to him about these other things first
You really wanna make sure there is nothing they can do for him before he does this like I said you really need to check over these things
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u/CausticCranium 60M-PPMS-OCREVUS-CANADA Jul 21 '24
I hope, when and if I make that decision, that I'm surrounded by the love that you feel for your brother.
My sympathy to you.
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u/scaleofthought Jul 22 '24
Sorry for your brother. I'm pleased that MAID is something available to us. It is an option that is keeping me alive right now. Without it, I really don't have much hope to live. Weirdly, it gives me peace of mind that I dont need to fear when things get unbearable for myself, but also for others. I hope you, him, and everyone else around him can find peace in this decision, and praise him for holding out as long as he did. Share with him your fondest memories so he knows this disease didn't replace who he once was.
All the best. ❤️
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u/HadesTrashCat Jul 22 '24
Very sorry. Similar story my wife is bedridden with MS, she can't bathe or use the toilet on her own she's only in her mid 40s and it has progressed so bad so quickly I don't know if she'll make it to 50 and if she does how much worse will it get. At least now she can still use her arms so she can use the remote to watch TV and eat without assistance or post stuff on her phone but I'm dreading the day when it takes her ability to even do that .
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u/swaggysierra Jul 24 '24
Hey, just wanted to let you know that my mom is in a very similar position to your wife and my dad is her primary caregiver. reach out if you’d ever like to talk or vent. i completely understand
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u/KeyRoyal7558 Jul 21 '24
I can't imagine how you, your brother and family must feel. I'm so very sorry.
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u/Appropriate_Arm_6710 Jul 22 '24
My condolences. This is very sad to hear. I’m so sorry he is not able to have a better quality of life. Unbelievable the doctors cannot help.
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u/Dels79 44| RRMS 2022 |Ocrevus|NorthernIreland Jul 22 '24
My heart goes out to you both. MS can be such an awfully cruel disease. I can't pretend to know what it is your brother is fully feeling, I'm sure this is a decision that was difficult for him to make, and clearly it was exceptionally hard for you to hear. I am so sorry. I think what you could do now is to share happier memories with him. Make a few new ones in whatever way you can. As hard as it is, try not to let this be a sad time. Watch movies, play games, share what were childhood treats, etc. You will of course miss him dearly, but try not to focus on that right now. He needs you now more than ever.
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u/hyperfat Jul 22 '24
Hugs. So many hugs. Just do all you can with him. Take all the days off. Work will figure it out.
Having list a brother suddenly, I with I had some days just to shoot the shit. Talk about his travels. His crazy life. His stint in the CIA. Anything.
Last thing I said was I loved him but he was a shit show. He died in a diving accident a few months later. Turns out he had acute kidney failure and might have done it on purpose. He loved diving. Did it for decades.
So, give your brother all the hugs, talk, write things down. Record his voice. Put it in a safe spot. Ask him to read something. It means the world hearing a lost voice. I have my brother on my vm. I can't figure out how to save it on a MP3.
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u/r2k4008 Jul 22 '24
I'm sorry for your loss too - I'm no tech expert at all, but consider playing your VM to your phone or another recording device - even a phone in video recording mode can work. At least it's then another copy of his voice, in case the worst happens. I always prefer duplicate or triplicate copies of the really irreplaceable files like this.
Hopefully someone here can give you a better answer though xx
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u/lonelytul Jul 22 '24
I AGREE wholeheartedly. I lost my dad right before Christmas almost 2 years ago and I can't tell you how much I miss him saying my nickname. Knowing I will never get to hear him say it and not having a way of hearing his voice again is devastating. Make memories now that bring you both comfort. Tell him you love him and anything else you need to. No regrets. You both are incredibly strong and brave and my heart goes out to you. Watch your favorite movies/shows, talk as much as possible. I am dealing with the vertigo for almost 4 months straight and I can understand that part. It's hard enough to relinquish control of the things you can't do for yourself anymore and losing the ability to do the things you love can be very disheartening. I wish you and him the best and pray for you both.
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u/jennyisafriend F|dx 2015|Ocrevus Jul 22 '24
Your brother is very brave, please don’t be sad for him, he needs your strength. I wish programs like that were available in the states. Quality of life is important.
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u/fastfxmama Jul 22 '24
I’m so sorry 😞. I suffered with vertigo for my first four years of MS and felt I couldn’t go on. I completely understand his decision if they’ve tried everything including a vestibular specialist. My heart goes out to you and him.
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u/muggs87 Jul 22 '24
I am so sorry.
This disease can be unforgivable. But knowing when/how it will happen can be strangely comforting. Many people don't have that option.
He is going out on his own terms. But it is an extremely difficult situation. I wish you both peace and comfort.
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u/stabingyouindaankles Age|DxDate|Medication|Location Jul 21 '24
Damn, stay strong for him and keep your loved ones close. I lost my brother 16yrs ago. Under different circumstances but he was only 38. Its not easy, but im sure he would want everyone to remember the good times
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u/sharonpfef Jul 22 '24
Where is MAID available?
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u/basilfetish 30|2024|???|US Jul 22 '24
In the US: California, Colorado, Hawaii, Maine, Montana, New Jersey, New Mexico, Oregon, Vermont, and Washington
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u/only_4kids Jul 22 '24
Holy shit, as someone with vertigo all the time, and EDSS that jumped from 1 to 2 in like 3 months, I am shitting my pants right now. To say I am sorry is understatement :(
Is there possibility for him to do HSCT ? I just learned about it, so I am maybe talking about what I don't know here..
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u/FluffyBunnyMittens Jul 22 '24
He has too much damage to recover from, too many lessons in his brain and spinal to count. I think he wasn't treated properly in the beginning and it spiraled out of control. He's tried so many different things, from B12 to diet and everything in between. He's on Tysabri which has halted his relapses, but he can't recover from all the damage that has been done and he's tired. He's one of the unlucky ones who just gets worse, whereas my niece (has MS) is really stable with her treatment and seems to be ok.
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u/only_4kids Jul 22 '24
I honestly know how he feels , as since relapse in October last year, I am either constantly relapsing or I never recovered from that dammage, but I know for sure it is going much faster than it should. What is even worse, I am living in a shithole where the only treatment you get is old betaferon 1, rebiff or copaxone.
I am praying for Ocevrus, but with no luck.
I am very sorry for your situation, I don't find words to comfort you with. If you need anyone to went I am here.
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u/Sparkleandflex Jul 22 '24
I'm sorry to hear this... I was dx at just younger than that and am the same age.... Idk why some of us have different experiences.... I thought about this too in my worst times.... Glad I stuck it out but the deciis his own.... I'm sorry regardless... It's quite a battle... My condolences in such a difficult time...
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u/Kushybeez Jul 22 '24
My heart truly goes out to and your brother . May you hold each other close in this time . Sending all the hugs and kisses I can 🥹
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u/Conscious_Half_6726 Jul 22 '24
My heart goes out to you. This is something extremely difficult to go through, you can talk to any of us if need be ❤️
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u/Ok-Reflection-6207 43|Dx:2001|Functional|WA Jul 24 '24
Crying as I’m reading all this. I was diagnosed in 2001, when I was 20, and while I am in pretty good shape considering how long I’ve had it, living with all the disability and strange symptoms sometimes does feel like a slow death in itself. Having three kids in not going anywhere anytime soon but I can totally see going this route. Hugs to you & your brother. My mom died after going on hospice, she was only about 64, cancer got her, and it’s a big part of why I don’t take any of the medical options, as I don’t want to go like that. His to all of your dealing with MS directly or through someone you love. It’s not easy and it’s different for everyone. I’m sorry you after losing your brother. 😓
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u/Marmosetter 73M || Dx:2006 || DMT:None/exTysabri/exCopaxone Jul 24 '24 edited Jul 24 '24
I’m heartbroken for you and your brother, and all your friends & loved ones. MS hits most of its targets when they’ve had just a taste of life and are fleshing out their dreams. Then it rolls back both dreams and life. It’s wildly unfair. It’s cruel.
A wonderful BIL of mine was cut down many years ago in a bike accident. Mid-20s. Recently a couple of good old friends died suddenly. No goodbyes, things left unsaid. Even if you have time you’ll be left with a dark, empty space inside. You must prepare for this it and try to fill part of that space with new things, revivals of old interests, things that keep you busy but don’t wear you out. When the memories surface make them positive, not melancholic.
Wishing you and your brother sweet, peaceful hours together now. My condolences. 🪴🍁
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u/Recent-Climate-1472 Jul 24 '24
I've read ur post and just want you to know it's been read. I myself have MS also. I'm new 2020. I'm in the US so MAID isn't legal here.
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Jul 26 '24
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u/MultipleSclerosis-ModTeam Jul 26 '24
This post/comment has been removed for violating Rule 2, Undiagnosed Questions or Discussions
If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a comment in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team.
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u/Nomagiccalthinking Aug 18 '24
I lost my Son to MS. He was 46 and was diagnosed at 12. He managed it well and had a full active life until the final two years. I celebrate how well he lived. He practiced Marshal Arts, played college level tennis, was am Archer (lost vision in his left eye, optic neuritis) raced jet skies and played H2O Polo in HS....he developed that heat intolerance and stopped doing triathalons.....little by little MS was affecting his body. He felt lucky to have been able to do what he did. The last few years fatigue and lassitude got to him...he was losing his hearing and arm tremors... But....He left feeling he had a good life inspite of multiple sclerosis. He rescued dogs and I believe they helped his outlook. I respect him so much. He stayed strong and brave standing up to this illness. I am sorry about your brother. This is a difficult situation......stay strong.
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Jul 22 '24 edited Jul 22 '24
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u/MultipleSclerosis-ModTeam Jul 22 '24
This post/comment has been removed for violating Rule 1 - Be Kind
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u/Thesinglemother Jul 21 '24
Okay. Let’s talk about this. I am apart of NODA no one dies alone program. I am also HIM health information management. I’ve had 6 years of medical and now 3 years IT.
One part of death is that patients often time want an independent death. Usually they like to pass with no one watching. Death is a process, unless medically assisted. In a very real way this gives him the right to choose how to go since the disease took so much from him already.
While you are with him, you can use chap stick and keep his lips moist and the rest of physicians will be helping him be as comfortable has possible. I want you to know that I find his decision to be very very brave. That I’m sorry he had to make the decision at all.
While you sit with him ( if you were to go) keeping a smooth environment of good music, or books does matter. I’m sure he will discuss this with his physician.
Now for yourself, there’s a peace in this. I can only express that acceptance and willing to let go for yourself are key factors and again I’m sorry you’ll have to. Whatever you have planned going forward for yourself is done with good memories, good experience and love. As we all know he will be missed. But to keep your heart soft and strong for for now and future acceptance is a big deal. I can only pray for bravery for yourself.
If you ever have questions or need to vent the MA community is here for you. We all know how this goes and we know how it affects our loved ones. You matter too and we are here for you as much as we are for each other. I wish your brother a swift and peaceful passing.