I agree with the below post. Stay out of a nursing home unless it is a total
last resort. I am doing all I can to try to get my friend home after over 2
years in hospitals for severe pressure sores, where half of his "behind" was
actually gone due to the severity of his wounds. This was done to him at a
community based hospital in NJ, and not at a nursing home. But nursing homes do
not usually have the staff to turn, adjust, etc. Not to mention the problems of
staph infections.
There are Medicaid Waiver programs and grants. I just contacted the National
Spinal Cord Injury Association. They told me there is a national organization
where you can raise funds and use their nonprofit status. This will then allow
you to keep your benefits and still have a better quality of life. There are
some group homes too. It take time to get the right working arrangement to live
at home with an aid available, but I have friends who do it all the time,
including my friend who was a C4/5- and had lots of problems keeping PCA's but
he managed, as well as managed keeping a kitten. He made connections with
friends in his apartment who checked up on him, and gave someone else his key
as an emergency. He kept Emergency button, and was very well hooked in online.
Check out Medicaid waiver programs if you get Medicaid- and see if you qualify
for more private duty nursing or care....Sometimes the local vocational rehab
centers have options as well, and independent working situations for extra
funds. I am a lower quad incomplete and find it is not easy, counting pennies,
and have gotten stuck...
________________________________
From: Dan <d...@unh.edu>
To: quad-list@eskimo.com
Sent: Mon, December 14, 2009 6:49:21 PM
Subject: Re: [QUAD-L]
Good God man! A nursing home has to be your
absolute last option. Nursing homes are breeding grounds for pressure
sores and antibiotic resistant bacteria. They are understaffed and their
help is underpaid which leads to the worst possible care. I am a
high-level quad -- I can only use part of my left arm and that is very
weak. I live alone in the old family homestead. I have helped during the
day but at night I am totally alone. I have two lifeline buttons -- in
case one doesn't work -- but otherwise I am alone. I know there is at
least one other high-level quad on this list that also lives alone. Yes,
it can be very scary but I prefer to be alternatives.
Some of your alternatives -- besides the nursing home -- are, if you have
the room, getting a live-in aide. You could provide him or her with free
room and board providing they assist you during the night if need be. Of
course, you could end up with an angel or a devil.
Also, I had a quad friend level 5/6 who lived in an apartment complex. It
was built for the elderly and disabled. He was the only disabled one in
the complex but he made friends with many of the other residents. At
night he was alone so he kept his door open and was able to call for help
during the night if he had to.
The other option we have in this area is a housing complex strictly for
the disabled. It has 24 apartments. Everyone has their own PCA's and they
also have a shared PCA for the nighttime. Not a really bad option but it
is very clicky.
So those are my options. Keep us informed on your choices and/or
decisions.
Dan
At 05:16 PM 12/14/2009, Merrill said something that elicited my
response:
Presently living in
>San Diego, California. My spinal injury is C5. Single
>living is not an option with my level of disability. As many other
>disabled quadriplegics, my income is a base level even before paying for
>health care. So, how are others here maintaining a quality of
>life.
>>
>>Nursing home living has been avoided for the near 20 years of my
>disability, but perhaps an acceptable facility would be an option.
>I have considered a living situation with a caregiver, other disabled
>person, or other person right for my needs.
