Wednesday, June 06, 2007

The Breaking Point

Everyone needs a break sometimes. If there were a way to take a break from this stupid disease, life with the disease might not be quite so bad.

Just a short break. Enough time and energy and strength to take a walk. A walk on the sidewalk outside my house to see the spring flowers that are beginning to sprout in the neighborhood, u
pright again with Garry. Going to the end of the street without the familiar bumpety-bump when my wheels cross the cracks between each sidewalk square. Just a short, smooth walk for just a short time. That would be nice.

But my MS does not allow breaks anymore. I need help with even small daily tasks, so Garry is on call all of the time, all of the time. Caregivers don't get a break either. Even though my caregiver is not disabled, he is still trapped in some disability restrictions. Caregivers deserve a break sometimes, hopefully it comes before they reach their breaking point.

To help caregivers take a break, the National Respite Coalition has a Locator Service to help find respite services in your area. Meanwhile, the Lifespan Respite Care Act, passed by the House 12/6/06 and by the Senate 12/8/06, and signed into law 12/21, cannot be implemented unless Congress includes funding for FY08.

Susana Carballido Perdigon
Caregivers also deserve an award sometimes. MSIF announced the winner of the Evelyn Nicholson Award for International Caregiver for 2007 in recognition of a volunteer caregiver, Susana Carballido Perdigon in Uraguay.

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1 comment:

Anonymous said...

We have not quite reached the 24/7 carer scenario yet but my husband has changed my life in the two years since we met. Before that, I lived alone with a network of friends and my two sons supporting me.

My husband is currently also at home as he is being treated for cancer of the thyroid. We call it the Mutual Care Home Society. In truth, I get more out of the situation than he does. Soon, he will go through radioactive ablation and be poorly for a few weeks. He'll need me then - and I don't know how I'll find enough energy. It scares me.