[tri-med] ? re: my husband's aunt's boy

My dh's has a cousin with tuberous sclerosis.  His is severely MR, and he
has severe seizures.  He can walk/talk etc, but is almost 40 and unable to
do much on his own.  His mom is over 60 and widowed 2 years ago.  She has 2
dd's, married, who live nearby, which is a big help.  However, her boy is
230 pounds and very difficult to often take care of, especially during
seizures.  She is often calling family members in the middle of night for
help.
The only help she has is a man, not a nurse, who will come by and take him
out for the day.  She can then get out of the house and enjoy herself.  Her
other problem is that her boy has sleep issues and is often up all night and
sleeping all day.  His is on about 30 meds/day, some of which make him
sleepy and mess up his sleep schedule.

My dh's aunt isn't probably the most well-read person.  She doesn't have
internet access, if she even knew what to do with it.  Her dd's are pretty
much the same.  I am guessing there is probably more out there for her, but
she wouldn't really know where to look.

I happened to be there last week when her son had a seizure.  My dh had to
to help the boy's helper get her son out of the pool since he was 230 pounds
of dead weight.  Once the seizure was over, then had to drag him out of the
pool and clean him up since he loses control of his bowels during seizures.
I just sat there thinking HOW in the heck can this woman take care of this
boy on her own!??

My amazement is that this woman has NO nursing help.  I would think that a
nurse, especially a night nurse, would be something she could definitely
qualify for.  I would think that most people in her situation would be
almost forced to put such a boy in a home.  Since her husband died, it is SO
incredibly hard for her to take care of such a boy almost by herself.  BUT,
I would assume it would be so expensive for the state to have to house such
a boy, that they would offer services to keep him in his home.

Just curious as to what others think.  I may start doing some research on my
own.

Thoughts?

-- 
Irene
Christina (4), Caroline (3 with partial trisomy 17p) and Kallie (1)
Caroline's site:  http://www.caringbridge.org/visit/carolinesmith


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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