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New Member
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Join Date: Jan 2010
Posts: 1
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New Member
Join Date: Jan 2010
Posts: 1
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Newbie, Questions galore???
A family friend was recently diagnosed with ALS w/ Dementia. The family now knows, looking back that she started having symptoms about 4 years ago. It took a long time to get a diagnosis.1st it was a nervous breakdown/depression. Over the last year she has demised rapidly week by week. Behavioral at first then muscular. Over the holiday's she was choking on food and drink often, her husband brought her to the e.r. (by the way, this is prediagnosis) They admitted her and quickly transferred her to a bigger hospital. This is where the diagnosis comes in (finally)! She was put on a breathing tube and would stop breathing whenever they tried to take it out. She now has a full trac. She is in a long term wing in the hospital(45 days) after that the family has no idea what or where they will go with this.
They are talking about training family to care for her at home. They and many others fail to see this being an option. She has a feeding tube, trac,and a catheter. Her husband still works, and so does all close relatives.
I guess my question is???? what are they to do? there is little to no support from the hospital, both hospitals she been in tell them there is only a few long term care facilities with vent support in our area, only to find out that the ones they (the hospital) was telling them about, was the one they are affiliated with. B.S.!!! That's not being helpful, that's being greedy!
Medicare won't pay over 45 days, won't pay for home nurse (just visiting nurse) Are there any support groups in West Michigan?
My heart hurts for this family, and for the mother/wife with this rancid disease that has so rapidly stole her body and mind.
Any suggestions or help is greatly appreciated.
P.S. I also would like any advise on what to do for the woman afflicted? Things that commonly they like or want. I want to bring a c.d. player so she can listen to music, lotions to rub her hands, arms, feet and legs... are there any other suggestions on what to do to make them more comfortable?
Thanks so much
IMAMOM in Michigan
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