For those of us caring for loved ones with Multiple Sclerosis. Group started by a Caring.com member in April 2012. Information Caring.com offers for MS caregiving: Multiple Sclerosis Resource Center
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about 1 month ago
I am a caregiver for my wife who has MS. I am, and always have been, a "fixer", but I cant fix this, and I kills me. I looked at myself in the mirror last night and came to the realization that since my wife's diagnosis, 1 1/2 years ago, I have been so focused on making her comfortable and trying to see that each day, one at a time, she is as happy and healthy as possible, that I forgot to grieve, for my wife, my family and for me. I don't do well with grief and I know that I am doing her more harm than good until I can come to terms with her condition and what it is doing to the vibrant, energetic, independent, good soul who shares my life.
about 1 month ago
I was prepared for the physical part of MS. I was prepared for the trouble walking, the wheelchairs, the drop foot, the incontinence, the bowel issues, etc. What has surprised me is the cognitive issues. In 2010 my wife had a significant relapse. She was for a short time in a wheelchair and nearly bedridden. Fortunately she recovered from quite a bit. She has some trouble walking, but can walk well with a crutch, cane. What didn't recover was her cognitive ability. I went from having a vibrant 40 year old, professional to what seems like a 12 to 14 year old. Her memory is bad, especially for new things or appointments. She acts immature, doesn't clean up after herself anymore, and seems oblivious to anything other than her world. She has turned inward and has gone on disability and now spends her days watching streaming content or listening to books. While this works well, she loses all track of time and doesn't take care of herself. She doesn't shower or clean up for days. Eventually I have to tell her to shower because she smells so bad. She ignores her phone and text messages so I can't get in touch with her when I am at work or need her. She spends money on things like clothing or political campaigns without talking with me and i have to either just write off the money as lost or try to get refunds. So far its never been more than a couple hundred at a time, but I am afraid one day it will be. How do I deal with someone who physically is better than many MS patients I know, but mentally is a preteen?
2 months ago
I'm 23 years old taking care of my mom with MS, she is 53 and can't use her legs, or her left arm. Being that she can't use her legs she is in a wheelchair, she can't get up by herself and can't even get into the toilet by herself. My life constantly revolves around the times she goes to the bathroom or making sure she has no bed sores. I seem like all she is doing is getting worse. She has no excitement to life and she looks physically just terrible. I'm at a lost at what to do, I'm in the middle of lawyer fees trying to get her into Medicaid so she can have in house help while I work, but I just don't know what to do. My dad passed away when I was 15 (the story gets better clearly) and my older sister is oblivious to it all, and I have a younger brother in high school who I so desperately want to have as normal as a life as he deserves. I get jealous of everyone who does things with there parents, like going to the mall, or even just going food shopping, because getting my mom out of the house is a back breaking task. I rely heavily on my mom to help pay for rent because I can't do it on my own, and of course she is my mom so I do love her, but she's not the same anymore, I can't go more then 24 hours without a huge fight, I slowly feel like I'm starting to resent her more then anything. I simply think I just want to talk to somebody who may actually understand. But being with how young I am, I'm starting to loose hope in a lot of things.
3 months ago
My only sister was diagnosed with MS a few years ago. She was dumped by her then fiance, had to move out of her home as she could no longer climb the stairs to the third floor apartment. She moved back into our family home. She continued to work the best that she could, and eventually met a guy that treated her right and loved her. They were married in May of this year. For the past two years it seems she has been declining. At first it was her legs. She had what we like to call "noodle legs." With physical therapy she seemed to get some strength back. She was confined to her wheelchair from Thanksgiving of 2015-February of 2016. She seemed to get stronger after that and was able to get married without the shadow of MS clouding her big day. In September though she seemed to be getting weak again. She was really upset when she was confined to the wheelchair for her honeymoon in November.
She talked with her doctor about the increased weakness, and the increased occurrences of her relapses. They did an MRI and they found new lesions on her neck. These lesions affect her diaphragm and her arms. Now she struggles to do the smallest things. Getting dressed is tiresome, never mind putting her beautiful hair in a ponytail or holding her adorable yorkie. She has called me multiple times to come to her house to help her shower because she cannot hold her arms up long enough to do it herself anymore.
Her doctor finally diagnosed her with secondary progressive MS. I'm not a doctor, but the name does not sound good. I am scared...What is her future going to be like? Does she even have a future anymore? She is only 28. I know she is still here and we should make the best of it, but I am terrified that living the life she wants will end the life she has.
I am mad. Why her? Why now? Why?!?!? She has so much living left to do. She has so many dreams and things to accomplish. She has given up her dream to be a mother. The doctor told her it is too dangerous to carry a child. She has given up her dream to be a hair stylist. You can't do that when your arms don't work.
I do not like all the uncertainty.
How does one deal with all the unknowns? Yes there are some treatments and I am grateful that the doctor is taking an aggressive approach, but that scares me too. The medication he is suggesting sounds terrifying. It can cause deadly brain infections.
I am her big sister, the defender of all bad and scary things. How can I defend and protect her from things I cannot see or understand?
I am really struggling with this news and right now it is extremely hard for me to keep a positive attitude. I am trying though, because I need her to stay positive. I need her to fight for her life. I cannot lose my sister!
3 months ago
I have no Christmas decorations up. 3 trees sit in their boxes in the attic while I'm out working for 10 hours. My daughter is coming home after finals tomorrow, with 3 friends in tow all in need of a warm home for the holidays while waiting impatiently to fly to their homes for Christmas break. I spent the weekend grocery shopping, cleaning, cooking, baking cookies and running to tend to my aunt recently released from the hospital with heart issues. I snow blowed, shoveled, and played with my dogs. I drove my husband who has ms to work his part time job on Saturday and Sunday at 6:30am. I had asked my husband for a little help getting some things ready for our guests. I came home from work to disappointment. Dinner hadn't been started. I went to the fridge to find 1/2 of the cheese cake I purchased eaten. 1 sleeve of Oreos eaten, the lunch meat and cheese left untouched, and my husband at the table sitting on his phone playing games. And so it begins. Pointing out it that the mail had not been filed, no chores had been done, the poor food choices, Suddenly I'm in the role of parent instead of spouse. It happens quite often now. A reminder to shower, put on clean clothes, not leave the used depends underwear on the floor in the bedroom, etc. it's a full time job. How do I juggle it? How do I make my life easier? How do I keep from hitting break point? I'm only 41, and I've been doing this for 12 of the 14 years we've been together.
3 months ago
I have been trying to help an old friend who has multiple sclerosis. She returned to our lives about 5 months ago. She also shows signs of some ptsd and is very paranoid. She has been through a lot in the time she was away from us. I just don't know if I'm helping her or making things worse. I usually don't challenge her beliefs even when I know its just her paranoid delusions. Has anyone else had anything like this happen?
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