What caregivers deserve

November 10, 2014 at 2:37 PM (Uncategorized) ()

I’m having that satisfied feeling of a long term project brought to completion. I know a caregiver. Smart and thorough. She made the choice to care for her severely disabled son for nearly all of his sixty years on the planet. He wasn’t always the most respectful or grateful person either which can make caregiving more difficult. She did so without much respite, in a two story inaccessible home with her son “trapped” on the second floor.

Looking at their future I used information and referral and my own knowledge of his state’s accessible housing and long term care availability and passed the information on to him.

You can’t make someone act on information, but I had hopes, and he slowly began to work through the information, and learn (better late than never) the life skills needed to manage the basic bills for the home…
Physical safety for both became a concern when she could no longer care for him. I wrestled with calling Adult Protective services, but did not, since I don’t like stepping on the autonomy of people I’m working with to help.
His family built on this and did the research, and as of this weekend both are ensconced in a senior accessible apartment. She has the beginnings of help at home and he has a part time aide. It’s not enough, but it’s a start.

When I worked on this my mind was most on a caregiver who gave up her own life to take care of her child full time. She is in her nineties now, and deserves a small, peaceful, manageable space and some help at this time in her life. I wish her well and I’m glad to have had a part in getting her the space she and her son need.

I also told this story because I think persons with disabilities are often unfairly accused of not understanding what a demanding and difficult job caregiving is…for example I think in the debate over assisted suicide, a person with disabilities’ opposition to such laws is unfairly characterized as a person with disabilities not giving caregivers recognition of how hard it is.

I do recognize how hard the work is and appreciate and honor it whenever I can. My opposition to assisted suicide is about me and my own autonomy, and should not be construed as disrespect for caregiving in any way.

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