My two sons are dying they received their death sentence in 2001. They have Huntington’s disease (HD), and I have watched them slowly deteriorate in mind and body for 9 years.
HD is an inherited neurological degenerative brain disorder for which there is No Cure.
Both my sons live in a group home in Portland and receive 24/7 care with three caregivers for 16 hours per day, and two caregivers for 8 hours per day. They are totally dependant on others for their care. The time is coming where the group home will no longer be able to care for them. The only option is for them to die in a nursing home.
I have begun my quest to have them spend their last few years at home before they die and take part in their care. The State of Maine does not have a solution to this problem because everything is controlled by a Goold Assessment (Medical Assessment) and programs that just do not fit the needs of everyone.
The program available would allow my sons to come home but only receive 1/3 of the hours of care that they currently receive, and this is based on the program type and the funding source. This basically means I would be responsible for 2/3 care on my own and due to current policies I would have to give up my guardianship. What is ironic about this whole thing is their care hours will decrease and their needs will increase. I would not be able to do this on my own.
Becoming my sons guardian, watching them lose their abilities and knowing they do not have much time left, has proven to be a heart wrenching experience. They should not have to spend their remaining years in a nursing home. I also know if my sons could talk, they would say, “Mom we only have a few years left can we come home to die?”
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