MS Caregiver Sharing - MScaregiver Donna

by Donna
(Richmond, VA)

MS Caregiver Donna

MS Caregiver Donna

MS Caregiver Sharing - written by MScaregiver Donna



http://mscaregiverdonna.wordpress.com/

I am a full time caregiver for my husband who is disabled with MS. Though diagnosed in 2006 with Relapsing Remitting, he has probably had MS for at least 10-15 years prior to that. He is a published writer and continues to work on his writing skills.

I work from home and in reality am a full time employee and a full time caregiver 24/7. My blog is written for other caregivers and provides a real life view of the challenges and triumphs of living with MS. My hope is that it will provide support to others who may be in the same situation.

The three children have now grown up and are out on their own. Our daughter married a wonderful young man who took my place in caring for her (and does a fantastic job of it) and they are expecting our first grandchild. Both boys are out on their own–struggling still–but doing okay.

It’s unclear if my husband has now developed a progressive form of MS (secondary progressive) or if his many losses have been due to exacerbations, hospitalizations, or severe spasticity. Whatever the reason, since 2006 he has gone from being very healthy and able-bodied to being in a wheelchair and unable to do very much without assistance.

His decline in 2010/2011 due to three hospitalizations has caused me to have to be home with him full-time. I’m very fortunate to be able to do my job remotely. Our three children are wonderful about helping out but for the most part, I’m a full-time wife, employee, and caregiver. I’m doing one or the other of those roles 24/7.

I often am helping Lynn with his care as I simultaneously try to get “work” done. My schedule and Lynn’s needs are such that it is impossible to consider attending support groups for MS caregivers. My world is pretty much narrowed down to home now.

I expect many of you are in the same situation. Therefore, I offer you this opportunity to share with me as I share with you. Hopefully by doing so we both will get the support we need to make it through each day and each new challenge.



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May 04, 2012
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Wonderful Site
by: Akrista


Hi Donna,
I have spent at least an hour (or more) reading through your site and I can SO relate. Love your insight and willingness to share. I plan to visit your blog regularly.

Take care,

Akrista

Apr 18, 2012
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Tempus Fugit
by: Anonymous

Donna,

I read your blog because your name caught my attention. My wife is named Donna, too.

I am 42 and have primary progressive ms. MS kinda runs in my family as my deceased mother had it for a few years and died in a nursing home when I was 12. She was 36. Although I know I had symptoms about 2 years prior I was not officially dx till 10.9.06. I went from being able bodied to wheelchair bound.

I write now to tell you how much Lynn appreciates ALL that you do. I know he endlessly tells you and I am not writing this to patronize you with an over used 'thank you'. I am doing this because this disease can rob you of your self when you have a progressive prognosis like we both do. You are not alone although I'm sure a lot of the time it feels like you are.

MS is a livable inconvenience for most patients but for those with a progressive prognosis the stakes are a bit higher.

Watch a sunrise or sunset. Listen to birds. Play with your grandchild. Enjoy the life that is here.

All my best!

Brian

PS: I guess I am writing this to tell you & Lynn that you both are not alone in this battle. Love each other and forgive. This disease is nothing more than an inconvenience for most patients but for the select few with an advanced case it can rage.

Watch a sunrise or sunset together. Listen to birds chirping.

Life is challenging enough but throw in a chronic illness and burdens can seem insurmountable.




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