NOTE: If you have reached the Caregivers Corner page before Oct. 21, 2011, click here to learn more about, and take a Caregivers Survey, otherwise, keep reading.
The Caregivers Corner is a place for you to find resources, answers, or just a place to share your story. And as a caregiver to someone who has a chronic illness, like MS, you face a special set of challenges. Many caregivers don't have to deal with the situation of taking care of a loved one until much later in their lives.
When your loved one has a chronic illness, care-giving can happen much earlier. And, although it's rare, children as young as 4 or 5 have developed multiple sclerosis. And if you are a caregiver to a young child, you know there are many other conditions that can cause you to assume this role.
Since this is a site about MS, more than likely you are a young adult facing a long road of illness with your spouse or partner. I knew there was something wrong with my husband even before we were married. He was my fiancé then. But I loved him enough to stay with him and face whatever it was he would have to deal with down the road.
We didn't know what it was, even though his parents thought it sounded like multiple sclerosis. Cir did a little research when he got a job at a popular health food store. To this day, he still follows most of the alternative healthy recommendations he learned back then.
My care-giving days began more as a cheerleader than giving actual personal care. I've always tried to be there and listen when he had complaints about strange symptoms or just was tired of dealing with people who didn't understand what he was going through. Also, in those early days, relapses were few and far between.
He still worked full-time and doctor visits were only scheduled for 6 to 12 month intervals. As time went on, he began to work less and less, especially after he began taking a weekly disease modifying therapy. By the time we had been married for almost 20 years, he had progressed to the point where working was no longer an option.
My care-giving skills came more and more into play. Now, along with me, he has a home-health aide who comes in three times a week to help him and provide respite for me. He has progressed from relapsing-remitting to secondary-progressive multiple sclerosis.
We've added links (see list to the right), to all of the caregivers corner articles and resources in one place to make them easier to find. And we would welcome your contributions as well. Have you found resources that were particularly helpful to you? Or would you like to share your story about something that made your life or the life of your loved one just a little easier? Do you have a question about something you're going through or just want to rant about the current system?
Well, use the form below the list to add your contribution. Anything that helps is very much welcomed and appreciated. In the meanwhile, check out the links to find some of the resources we've found helpful.
We know you have a story to tell. You live your life with someone who has MS. And let's face it, sometimes it's hard. By reading your story, other visitors will realize that they are not the only one.
We'd love to hear from you, and so would our visitors. Knowing how you cope with your role as caregiver, can help others learn to deal with day to day issues as well. Even if you just need to feel that there is someone out there listening; it helps.
So go for it! Share your story. Be a part of this valuable resource we are building for others living with multiple sclerosis.
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Cir & Akrista
You are reading original content written by Akrista or Cir L'Bert of Life in Spite of MS. If you enjoyed reading this blog, please consider following us on Facebook, Twitter, Pinterest. See you there!