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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25 days 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!
about 1 month 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.
about 1 month 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?
pressing forward 2 said...
about 1 month ago
My daughter, 49 has progressive MS. Started out 25 years ago while in college. From relapsing remitting to secondary progress to progressive. She is wheel chair bound, has dementia, incontinent urine. Has become almost non verbal. Has flat affect. Mostly agrees with anything said. She seems to be slipping away from me in bits and pieces. I am her caregiver. I am married, but my spouse does not understand the disease, nor is willing to. I am on a lonely journey. I still work. I am overwhelmed. I am so hurt to see her continually decrease. How does one get thru this when there is no one who understands
2 months ago
I quit my job in December 2014 to go to school full time and two days later my wife was diagnosed with MS. At first changes were small but over the last year they have become basically unmanageable. She and I have a three year old together and I also have a seven year old with my ex-wife. I had to quit school in May of 2016 and wished I would have quit sooner. I went from the Presidents List to not attending class. We had to empty our retirement funds just to stay afloat and that money is basically gone. Im presently trying to prepare for test that certify me in the field I'm attempting to get into; but Im over whelmed trying to care for my wife and family while doing anything else. Most of my wife's health issues are cognitive for the time being but it changes regularly, it will fluctuate between depression, IBS, memory lose and struggles with thought process ( such as what am I doing and why ). A lot of days these symptoms are collectively working against her almost on a daily basis and for weeks or months I handle it all with a smile on my face and positive reinforcement; but eventually it always leads to me feeling resentment towards her, then I lose my since of patients and start to question if I will be able to continue to do this for much longer. I don't want my son raised in two separate houses and I don't think she could survive without me but I don't know what to do. Money is running out as is time and energy. I love my wife and want what is best for her but I struggle to keep up and I'm not sure where to go from here. Any words of advice would be appreciated.
angle face said...
3 months ago
my friend is loosing the battle of MS. has been living with it for about 43 years. comming to a quick end... he had a sezier August 1 and the legs have stopped working... prior to this episode he could transfer to the couch from the wheel chair, and onto the toilet and bed as well.. he was pretty independent... since August 1 he needs help almost 24/7 its really been hard....
4 months ago
My son is 32. He had relapsing remitting MS for ten years before he transitioned to secondary progressive ms. He lived with me for 5years and I watched him decline. He is now in a wheelchair without the use of his right arm (tremors). I do everything for him yet he lashes out at me constantly and says any mean thing he can think of. I have RA scleroderma and lung fibrosis. I know he's angry and depressed (he takes meds). What can I do my heart breaks for him but I can't take the abuse anymore. Help!
5 months ago
My dad has had ms for 44 years and now is declining bad and keeps getting urianry infections that land him in the hospital. My mom is taking care of him but he is mean to her and doesnt follow what he should do and falls onto the floor and lays ether for hours until his legs are strong enough to get up. My mom changes him bc he cant make it to the bathrroomn by and i dont think she can do it anymore.
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