My brother, with Parkinsons, will be coming home from the hospital (in for dehydration) with a feeding tube in his stomach. I'm worried his live in caregiver will not be handle what needs to be done for him. Is there a nurse we could have come by each day--at least for while--to check on him?Is this covered by medicare?
Is your brother able to eat by mouth at all, or will all his nourishment be through the stomach tube? If so, there are some other arrangements that would need to be made.
My father was on 4 hour feeding schedules, which including crushing his meds and administering them the same way as nourishment, through a very, very large bore syringe which had to be flushed before and after use.
Just FYI, if the tube gets clogged, as it did once, I was advised to add some apple juice in the syringe - and it cleared the clog.
I was initially very nervous and didn't think I could handle it, but one of the nurses at the rehab center showed me how and after a few tries I got the hang of it. But there is some maintenance with this. And it has to be done on a regular basis - for Dad, it was every 4 hours, 7, 11, 3 and 7, then again about 1 am.
You should also inquire (assuming he's not eating by mouth) whether there will be a machine (I don't recall what it's called) that operates something like an IV machine. Every evening I had to hang the tube and fill it with 4 cans of the liquid food.
Medicare in 2003 did cover all the costs, but only provided a smaller sized overnight tube, so the evening and late night feedings had to be split up. After the four 7 pm cans were drained, I had to add another 2 about 1 am (it took about 5 hours to drain), which meant that I napped until about 12:30 am., got up and oriented myself before adding the last 2 cans (6 cans were required overnight).
It WAS exhausting to be on that schedule (there were also home care staff coming so there wasn't that much nap time during the afternoon). If his live-in caregiver is the only person doing the feeding, and it's on a similar schedule, she will quickly run out of energy.
Eventually the home care nurse did one of the day feedings while I napped.
If his doctor prescribes it, it should be covered by Medicare, but there have been changes since 2004 so you'll have to ask his doctor's staff whether or not Medicare covers everything. Or get specific information on the equipment and canned liquid he'll need and call Medicare yourself.
I agree - your caregiver will need help or she'll burn out very quickly. My sister had just died, so I had her house, mine and my father's and decided early on that I could only deal with one house. Everything just got left behind. Your caregiver might find that keeping up the house and medical issues are too overwhelming. You'll want to keep in regular touch with her to make sure she doesn't become exhausted.
I'm wondering if you're close enough to handle some of the tube feeding, to give her a break? Do you have any other family close by?
I'm not at all personally familiar with a board and care home, but if you check it out, make sure someone knows how to manage a feeding tube, or is willing to be trained. My first fear was pushing the liquid too fast through the syringe and causing problems, so I was unduly slow, but eventually got used to the right pace.
If there's a nurse in the care home, check with her to see if she's done this. A trained aide could also handle it.
Just to add some humor...when Dad first came home, the supplies of canned nutrients were delivered. There were 10 cases of them! I had to empty out the hall closet to stack all the boxes of liquid nutrients.
Something else you should check is getting speech pathology home care along with nursing care. Dad had a speech pathologist who taught him how to use specific exercises designed to strengthen the vocal chords. We joked about it because one of the exercises was to make guttural sounds - of consonants together, such as "ungh". I don't remember any other of the peculiar sounds. We joked that we were using "caveman speak".
Another exercise was basically a sit-up, but only for the neck and head. These exercises should never be done without explanation first from a speech pathologist, and neither you or the caregiver should do them along with your brother. Our speech pathologist told us it could harm my vocal chords if I did them.
So I didn't get to grunt and groan along with Dad!
Yet another thing to check out is when your brother will be getting videoscopic swallow studies to determine if he's still aspirating. It was only after these showed no aspiration that Dad could eat real food again.
The issue of the exercises though didn't come up until we had home care; it was the home care speech pathologist who mentioned them. The speech pathologist in the rehab center wasn't very aggressive and just gave up after a month.
I should probably have also mentioned the "stims" - little foam squares on a stick like a lollipop stick. To the best of my recollection, they have a lemony taste, which apparently stimulates some of the swallowing reflexes.
it. I live 40 miles away, so a long trip but not impossible for me, but if she can't handle it, maybe that will be the time to seek out a home for him. I will make sure they know his condition and can handle the feeding. Thanks again.