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Long Term Care of Children, Parents, or Partners

Posted Dec 24 2009 11:10am

I had an e-mail from a distraught parent recently saying she didn't know how she could continue caring for her large son who had a severe progressive neuromuscular disorder. He was getting too large to lift and she wanted to know if I had any suggestions.

Today in the New York Times  was an editorial talking about the wives who have given up their careers to stay home and care for husbands who had been severely damaged by the wars in the Middle East.

The caretaking of a loved one on a long-term basis can be emotionally and physically exhausting. We have few resources whether it is for children, the elderly, or our injured service men. There are usually nursing homes but those I have had to visit left much to be desired. Often the smell which hits you as you walk in the door can be overpowering.

My answer for the mother with the son with the muscle disease was calling a former parent of an older young woman who now lives in her own apartment with around the clock caretakers. The father immediately offered to contact the distressed mother and the woman couldn't have been more grateful.

It is possible to go through the local housing authority to request special housing but it may take two or three years to get housing. Other resources are to contact a social worker connected with the veterans' administration, an agency associated with a specific disorder or a social worker at a nearby hospital. Other  possibilities are to contact the excellent group, Family Voices, the Center for Medicare Advocacy, the Center for Patient Advocacy, the Patient Advocate Foundation, or the Center for Children with Chronic Illness and Disability.

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