Dave has Huntington's Disease, which doesn't require "skilled medical care." It does require over $600.00 monthly in medication, food via the feeding tube, and help to bathe or dress.
We live on Social Security and I use the food bank and other charities to provide for my family which includes two teenagers. I have lost my home and am $40,000 in debt. I have been made to prove his feeding tube was inserted for "other than cosmetic reasons." I have dealt with some of the rudest people through social service programs who have suggested I divorce him.
Having an orphan disease means there is little support. There is only one neurologist who takes Medicaid here, and he has never had a patient with HD. It is bad enough to watch someone you love die in slow pieces from a disease for which there is no cure. I have lost my best friend, my lover, my other half.
Everyday when I leave my forty-six year old husband of seven years in his narrow bed at the nursing home, he looks at me with sad brown eyes. With far fewer benefits I could have kept him at home where he wanted to be till the end. But the rules would not allow for that and I couldn't fight any longer. I know Dave doesn't want to live in a nursing home. I have no choice. Maybe now I can find some of the me I lost while caregiving.
Note: For information on the author's book, Faces of Huntington's, visit Amazon.com.