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Share your experience as a caregiver

As a caregiver, you’re providing support to a loved one. But, finding support for yourself can sometimes be so difficult. Share your experience as a caregiver and talk with others who are also caregiving for their loved ones.

  1. Newly married 6 yrs now, my husband new of my diagnosis on third date.
    So, juggling husband & primary care giver "roles" is fustrating need any suggestions.

    1. Just when I feel like I’m balancing all the plates something comes up and I have to recalibrate. I wish I had suggestions on how to balance spouse and caregiver but all I’ve got is take it one day at a time. I try to remember that my spouse did not choose MS.

  2. I am the mother of a son who was recently diagnosed at the age of 39 with MS on 10 August. I immediately started reading and researching to learn all I can about this disease.

    One of the books I read has given me and my son great hope:
    ‘Multiple Sclerosis and (lots of) Vitamin D’ by Ana Claudia Domene. My son has started the Protocol. I hope this book is helpful to others. I will post updates about my son’s progress.

    1. Welcome, aparks! Thank you for sharing! We're glad to have you here and please do post updates on your son's progress.

      Best, Erin, Team Member.

  3. My father was my mother's caregiver and shockingly passed away last year, leaving me to care for mother. She's going on year 25 with MS and in a wheelchair for about 8-10 of those years. My life feels over. I'm in my early 30s and find myself pissed off at her for having me when she was already having symptoms before she became pregnant. I find myself looking forward to the day she's gone because I won't be burdened anymore even though she's my mom and I love her. I feel like I'm being punished but I obviously hide how I feel every day from her but this is a truly terrible way to live. My youth is wasting away caring for my mother.

    1. @FlowerDaughter Gotcha. I understand better now. It's one of those situations where reality is what it is. I have your same situation but I'm 61 so I won't have it as long and I'm the wife not the daughter but I get what you're saying. There's no break in the forseeable future. I don't know about the options in your country but if it gets to be too much, can you have her admitted to a facility permanently and go there to visit regularly for support? I suspect that would be better for your health in the long run since long term caregiving is not a healthy lifestyle.

    2. Hello,FlowerDaughter, I' sorry that you're having a hard time, & I understand how frustrating it must be, in 1994 my mother was diagnosed with Alzheimer's when she had the diagnosis she was far stage but in the middle, I am one of five children and always been closest to my dad, then my mother,so I think it was only natural for him to ask me to go with him for her first appointment and that's where we received her diagnosis, my dad an Old Navy guy became the best nurse her, and although there are five of us I was the one that was mostly supporting my father in his efforts, Flower Daughter, luckily things have changed since 1994 and there are so many more options for people that are caregivers not to mention being compensated for, I don't know first how about your mom is but if she's 50 and over you can check into the Department of Aging for your city, also; if you haven't already when you find sometime, please get acquainted with her insurance and see if there's a program that allows for caregiving services, all so many churches have different programs that can also assist you, Flower Daughter, it's a good thing you found this site if it's very helpful and as you found out it's not just for people with multiple sclerosis I don't know about everyone else of course but I'm with you and I'll keep you in my prayers.

  4. I can imagine how you feel It is horrible to be responsible for caring for your mother for who knows how long. Are there any volunteers around that can help you? I know how you feel about your mother being pregnant with you when she knew she was a carrier of MS. My mother was a guardian of her 7 brothers and sisters. She complained about that experience a lot. After all that, why in the world would she even want three children of her own. My mother took her secret about MS to her grave. I had suffered symptoms for 40 years and misdiagnosed a lot by doctors. By the time, I finally received the news that I had MS I was 61. I had one living aunt and I called her to ask if my mother knew that there was MS in the family, yes she did and I even had cousins that were in wheelchairs. I was and am furious. My mother did this to me and believe me, I do say that a lot. I am so sorry that you are going through this, especially when you are so young. I'll be thinking and praying for you.

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