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Thanks to Caregivers Who Share Our MS Load

Thanks to Caregivers Who Share Our MS Load
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MS_Wire_Ed_Tobias
The MS load we carry is heavy. Some of us, unfortunately, must carry it alone. But many of us are fortunate to have someone with whom we can share the weight.

It’s National Family Caregivers Month and a new survey shows just how heavy that load can be. Caregivers, it will come as no surprise, are carrying their own problems and needs.

Here are some of the key findings of that survey. It was sponsored by EMD Serono, which makes Rebif, as well as many non-MS drugs.

  • Nearly half (49%) of unpaid caregivers surveyed have feelings of depression.
  • Nearly half (45%) of unpaid caregivers surveyed feel that their physical health has suffered as a result of their caregiver duties.
  • Nearly half (45%) of unpaid caregivers surveyed often don’t have time to book or attend medical appointments for themselves.
  • 41% of female unpaid caregivers report that being a caregiver has put pressure on their financial situation, as compared to 28% of male caregivers.
  • Almost half (47%) of female unpaid caregivers do not feel supported at all by the local community, and a third (33%) of unpaid caregivers do not feel supported at all by their local health system. Just 40% of unpaid caregivers feel supported by their employer in their role as a caregiver.

No surprise there, nor in the depression and health problems that were reported. I am surprised, however, that the percentage of caregivers reporting these problems wasn’t higher.

Caregivers shouldn’t have to go through this alone. Just as there are support groups for MS patients, there are organizations supporting caregivers. They include:

I’ve found some of the best resources for caregivers, however, are the personal blogs that are written by caregivers themselves. Here are a few that I’ve stumbled upon. Not all of these are specific to MS, and some are no longer active, but they all contain good information:

And the National MS Society has published A Guide for Caregivers that’s chock full of good tips.

Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.
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Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.

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