Can we have a visiting nurse come each day?

Glad to be of help. Best wishes with this new venture for both you and your brother.

Thanks for your help. I now know what questions to ask the doctor. I'll check on the speech pathologist and ask about the stims and thicker liquid also.

Sorry - I didn't mean to scare you, but I did want to give you a heads up on the various issues, as it seems as though no one really explained the various issues to you. It can be overwhelming if you're not prepared.

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.

Thanks.It all really sounds scary to me. I really don't know why they haven't had a speech pathologist working with him all this time, but he's been doing ok eating on his own and drinking Ensure but he says it just takes him a long time.He's never choked so far, but they say he didn't pass some test the speech pathologist did on him which allegedly means he could choke or aspirate. I guess I will have to talk to the doctor first to find out more. That should be Monday. The caregiver says she has done it before for her own mother, years ago. So she'll be a little familiar with
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.

Another thought - we had some thickened liquids that the speech pathologist used when she came for visits; I think the rehab facility gave us some, but you might have to order them.

Your brother may have some element of dysphagia, in which he aspirates his food and could develop aspiration pneumonia. My father was on tube feeding for about 9 months, but the home treatment was from mid February to June.

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.

thanks so much for your response as it has helped me quite a bit. My brother says he can still eat, it just takes him a long time. But the nurse told me it is not safe as he will choke or inhale liquid into his lungs and get pneumonia. So I think he will not be able to take anything my mouth. It does sound exhausting and I don't know if his caregiver will handle it. I am thinking of trying a board and care home. There are several here that have 6 live in patients and a nurse and aids in attendance. It might be the best thing for him, although he does not want to leave his home. Have you heard anything of these types of living arrangements?

Ask the doctor who's scripting for the home feeding tube and equipment to prescribe home care for him, and be sure to explain his situation, that he has a live-in caregiver. The visiting nurse will do an assessment and determine necessity of visits, which may or may not be daily.

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.