Dear husband has forgotten how to swallow after chemo and radiation for throat and tongue cancer. Must take all meds, food and water by tube. Special food is delivered by Apria and his meds are mostly compounded liquid. We live in CA. He has a decent pension.....none for me when he dies and he does receive social too...much less. However, we can't afford nursing care. Both of us are 77.....I'm tired and scared if something happens to me, nobody will be able to do this. Closest relative 1 1/2 hrs away.......

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You are exactly right JoAnn29. I have learned how to do the tube, but I do not have a single soul to help out if something happens to me. He has insurance, but it won't cover an RN to come to the house or for a nursing home. We have Medicare through an HMO so it is different. The HMO does not have a facility for him other than the hospital and of course, that's limited. We do not have enough money to pay for extra care should it be needed.....I did research an RN and they only do a minimum of 3 hours at $36 per hour. That could get very pricey.......
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I read this post and did not get the impression that she couldn't do it but is concerned if something happened to her who would take care of him. Do u have children or relatives close by? If so, see if one will learn how to do this. Is this Medicare covered. If so, a visiting nurse assoc. maybe able to help.
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Yes, the food is from Apria.....Thank You. Good suggestion!
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Get someone from Apria who supplies the liquids to show you how to do it. They should have given you instructions, so ask. Your insurance is paying for this, so you have a right to know how to do it.
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The biggest problem here, it seems, is that we both belong to the Kaiser HMO and both the chemo and radiation was done through them. There is no separate home healthcare agency......however, I will contact the Social Services Rep. to see if she has a suggestion for help in an emergency. I think, at this point, I know how the tube feeding works. Thank you for your input.
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Some healthcare professional should be required to make sure you can do this and also sign off as to your ability to do this. Get back to the provider who wrote the order for tube feelings or the home healthcare agency
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wendiq, I can understand your being nervious at first, but i think in time it will become so natural you wont worry. Just remember to follow the instructions carefully. Also talk to your husbands doctor. They should have set him up with home care after rehab at least for the first 4-6 weeks. Cantact your ins company and see what they will cover. As for the times when you are not available like an emergency situation, you may want to line up a caregiver who is trained in tube feeding. Contact area agency on aging see if they can refer someone. You should also check into respite care. If you have either a caregiver who will come in or a home he can go to should the need arise you will feel much better prepared. Make sure the doc knows you need help to get this all under control. You can do this many many people do. We are here to support you so let us know how u are doing.
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wendiq, I take care of both my parents.
Dad has been on tube feedings for 3 years because
he has late onset Parkinson's with swallowing
problems that caused aspiration pneumonia.
He has nothing by mouth.

We were all shown how to do the feedings, flush the tube,
grind the meds, and clean the peg. A nurse from home health
gave us a demonstration and had us each do a feeding.
I took notes so I would remember the steps. The company that
provides the cans also offers a nurse to come and review again.

It took a few months to get the right feeding
schedule. The Dr helped adjust his schedule.
I wrote it down and taped it to the wall. His tube
feedings ar easier than grocery shopping and fixing
mother's meals.

Emotionally it is hard, especially at holidays.
Meals are very social. I remind myself that
daddy had 85 years of fine dining and this was
done to save his life.
I hope this helps.
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Wendig, if you're referring to a PEG tube inserted through the skin, just above the navel, I've been through this, and was unsettled and concerned when l learned I'd have to do it. While still at the rehab facility, I did it once with a nurse, continued it cautiously at home and after a day or so became very used to doing it.

It's been over a decade, but as I recall the liquid food was also delivered, with about 10+ crates delivered at one time. They filled up the entire front entranceway closet.

Are you using a syringe, cleaned before and after, with apple juice first if the tube becomes clogged?

If your father has a pension, regardless of your financial situation, you might want to consider reserving some of that for care in the event you're not available. I do understand your concern since your father will be relying on you for feeding.

However, I don't understand why, at least initially, his oncologist couldn't script for home care so you don't have to fund it out of pocket.

Is there a possibility he can do it himself? As I recall, the PEG tube "top" was unplugged and the syringe used to slowly insert the fluid. If he has use of both his hands and understands, perhaps you could work with him to learn to feed himself?

If not, I think it's worth consideration to use some of his pension or SS funds as a reserve for care. It wouldn't hurt to explore now to find a home nursing company with experience in this.

I don't mean to pry, but I don't understand why some of the funds he has shouldn't be used reserved for his eventual care if necessary.

But I would discuss the issue with his oncologist, and perhaps, ask for a referral to a speech pathologist.

In addition, there are swallowing exercises that can be done to strengthen the swallowing muscles. If I remember correctly, they're called Shaker exercises. I would speak with his oncologist and see if you can get home therapy with a speech pathologist to work with him and test with a videoscopic swallow test to determine if he's aspirating, assuming that chemo and radiation haven't destroyed his swallowing functions.

If oral consumption of food and liquid is a permanent impossibility, research online to find other support groups. I found one with people who were NPO completely, including some parents who were managing the care of children with trachs and would always be NPO. It was enlightening to see how they coped.

Would your relatives be able to step in if needed? Is there consideration that if you're not available, DH might move to a facility with some level of supportive nursing care?
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