Hi Kandy! Thanks for responding to my question. My husband is Social
Security exempt, so we don't qualify for any govt. programs. So far God
has provided each piece of equipment we have needed as the need arises.
Thanks for your suggestions, though.
My husband was also on lots of meds. I asked lots of questions -
what is this or that for & does he really need it? Our pharmacist is
really helpful with this (at Walmart). We have weaned him off a lot of
meds over the past yr (most of which made him so sleepy he couldn't stay
awake.)
A friend used the wireless door bell and glued a popsicle stick on
top of the button. They fastened it on his wheelchair or put it next to
his head when he was in bed. All he had to do was turn his head to bump
it and call his wife. We use a baby moniter that plugs in where he is &
I keep the receiver with me so I can hear what he is doing. The baby
moniter works well for us - mostly at night when everyone is sleeping.
The rest of the time there is usually someone nearby that can call me if
he needs something (there are 10 people in our home).
It has been about 2 months since we completely stopped formula
feedings, but we still use the peg tube for the gallon of water he needs
to drink each day & to give him medicine. About 8 months after his
accident, the home health nurse stopped coming (she felt I didn't need
her anymore since I was doing all his nursing care by then). She had
been bringing the special soy formula that he needed. When I started
checking prices, Walmart was the cheapest at $400/month. I went home &
told my husband he was going to start eating or starve, since we
couldn't afford his formula and food for our 8 children that still live
at home! It was the motivation we needed to work on teaching him to
swallow again. At first I used a little table top baby food grinder to
puree soft foods, then fed it to him. In Jan., we were able to go to
soft table foods and stop the formula completely. He is using his arms
more these days and still doesn't have an appetite, so he has lost some
weight. I take him over to the nursing home where his mom lives
(Alzheimer's - I am her legal guardian) and have the aides weigh him
every month or so to keep track of how he is doing. If he continues
losing weight, I'll have to get him to eat more. Learning to eat again
is a slow process & takes patience. Keep trying! I'm not in any hurry
to have the peg tube removed since we still use it for water & meds.
The nurse that helps me shower him once a week suggested I keep one case
of formula on hand in case he gets sick & can't eat. Then I would have
the formula to give him & maybe keep him out of the hospital. We'll be
praying for you all. Mom Of Many
