Welcome to the MS Caregivers Blog. My name is Jon Strum and I am a caregiver for my wife Jeanne, who was diagnosed with secondary progressive MS in 1997. I'm happy to welcome you to a blog written by MS caregivers for MS caregivers, and I'd like to thank Audra Hindes, Director of Services Management at the Southern California Chapter of the National MS Society for providing the energy that moved this project from concept to reality in what seemed like the blink of an eye.
Being a caregiver can sometimes feel like an incredibly lonely undertaking. That's why I'm excited to be starting what I hope will become an ongoing conversation that you will find to be supportive, resource-rich, funny, sad...but, most of all, I hope this conversation will serve to constantly remind each of us that we're not alone.
Please stop by often...add your own comments...ask questions...provide answers...and interact with what I hope will grow into a large online community of MS caregivers. Welcome to the conversation.
As sole caregiver for my husband, diagnosed in 1988, I find there's plenty of moral support available on caregiver sites, but very little in-the-trenches guidance. I get a bit tired of the "care for the caregiver" stuff. We don't need to be told this - we're all doing the best we can to stay sane and healthy, and often not much more is possible. I'd like to see some focus on sharing practical information on day-to-day caregiving techniques and tips. Unless you're in nursing school, nobody teaches you how to be a caregiver - we devise our own solutions, or learn them from others. (Some of us even make our own "daily living aids," since the commercial ones are so outrageously expensive.) This could be an invaluable source of that on-the-ground expertise.
Posted by: Lindagene | August 02, 2007 at 04:55 PM
Like Lindagene, my wife was diagnosed in 1988. This coming Sunday we'll be married 40 years. That means half our married life has been under the influence of MS. The last 5 years my wife has had to resort to a "power chair" for her mobility. The past 8 months we've also been battling Breast Cancer. She's had six chemo treatments and will have another seven months of Herceptin treatments yet to come. As I sit here tonight, trying to think about what to write, how do you put into words the "challenges" of being a "care giver"? How do you describe the "tricks" of keeping your sanity or of "sticking to IT"? I think we're all in "IT" for the long haul, only because the alternatives are unacceptable.
Posted by: Mike Mullich | August 02, 2007 at 11:42 PM