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Sideways
Feeding tubes.

So... it turns out that after a little googling, I have discovered that feeding tubes and elders is more of a hot issue than I realized. From what I gather, the issue is usually in whether to place a feeding tube in an elder who cannot feed themselves due to dementia. That is not what led to my situation, but it is polluting my search results so much I'm getting frustrated finding good information about elder care options when there are feeding tubes involved.

Short story for those who don't remember: my mother was diagnosed with throat cancer and underwent chemo/radiation. It is not unusual for head/neck cancer patients to get a feeding tube during treatment even if the cancer itself isn't intruding on the throat because the radiation itself makes swallowing very difficult. However, my mother, now 69, isn't participating in her own recovery. Not doing the throat/swallowing exercises necessary to relearn how to swallow and get off of the feeding tube. So the tube is a fact of life for the foreseeable future. And she is becoming less and less engaged in the world in general. Not exercising, not cleaning up after herself when she makes (horrible) messes in my sister(primary caregiver)'s house.

The short of it is that there needs to be additional help. I don't know if it needs to be in the form of a visiting service or an inpatient location, but she is behaving in ways that are increasingly dangerous to herself and the household pets.

The sticking point is the PEG (feeding) tube. Apparently, a lot of services are not legally allowed to be provided if the patient has a PEG tube. For example, assisted living is not allowed to take patients with feeding tubes by law in this state (Florida). Does anyone have any experience with what kind of services do provide for patients with feeding tubes? Are there visiting nurses? Is nursing home the only option?

My sister and I are being held hostage by her feeding tube and her refusal, for whatever reason, to work to get off of it. I just spent the morning at the hospital getting the tube reinserted after it came out, since she won't care for it properly. I'm exhausted of the situation, and I don't even live with her. I'm just hoping that someone else has "been there, done that."
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Ann
Yours is a different situation, but if she is that far gone she may just need hospice, where they dont encourage forced feedings. It allowed my dad to pass in dignity at 84 after mini strokes and Alzheimers took their toll. Their philosoply is aabout quality of life, not quantity and letting nature take it's course. He was in a memory care center.
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Ann

Many memory care of regular assisted living centers aren't equipped for that and yes, usually it's just nursing homes that can manage that.

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Kat W.
It's my understanding that a feeding tube requires skilled nursing services, and a home health aide can help prep it but not actually do the feeding; it would require a nurse. I'd call home health agencies and see if they have nurses who can do it. Even if that service is available, I'm sure it will be more expensive than a home health aide.

Is there any way your mother can transition to a pureed diet? My father had swallowing issues, aspiration pneumonia, and ended up on a pureed diet. In Florida, an assisted living facility with the right license can accept someone on a pureed diet.
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anon2
With such a condition, Sideways, your mom should be in a nursing home then with professionals round the clock. Some will accept medicaid if $ is a problem.
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Sideways
Thanks for the input, everybody.

Regarding the pureed diet, unfortunately, she can't. At this point, her throat muscles are atrophied from a year of disuse, plus whatever damage radiation did. Physical therapy would help with the atrophy, if she would do it. But as soon as it hurts or is hard, she won't do the exercises.

I have some calls in to try to find out about the limits of what home health is licensed to do, and I'm also exploring nursing homes. I had hoped to save the nursing home option until she was no longer able to get around on her own, but that may not be possible. I may have to rethink what my mental picture of "nursing home patient" is.

Thanks again. This board is always such a reality check for me.
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Ann
You might consider hospice for her. My dad had throat restrictions after mini strokes...hospice was the kindest thing.
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BC

Sideways, First I admit that the situation is difficult to grasp. as I understand it, your mother is refusing to wean off of a feeding tube, but there isn't a medical reason why she can't? 

 Is she afraid that her increased independence would be used as an excuse for abandonment? Is she taking any anti-depressants? She may need some sort of support for depression. 

I don't know what to say and probably should have not gotten into your thread. Fact is when my Mom was declining at age 94, they offered us a feeding tube for her and it was up to ME to say NO. I knew what she wanted but it was hard to defend her wishes.  

Without really knowing your mother's condition and her wishes, but with the understanding that she IS choosing to live this way....I would give her a choice. ...Therapy or NH. 

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BC
In retrospect...How much choice do you have? Is your only option to say, "Mom, if you don't cooperate with therapy, I will not be here for you."? Can you do that? Thinking maybe she needs counseling and/or anti-depressants.  
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wendy
are you looking for services that will be covered by medicare or medicaid, or can you (or your mother) pay out of pocket.

How much help do you think she needs?
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Sideways
BC, you're right, she needs therapy. And anti-depressants. She was on anti-depressants and stopped them of her own accord, cold turkey "because they gave her strange dreams" despite the fact she admitted that they were helping her mood. And the therapist, well, she keeps putting off the appointments, but we've been trying to get her there more regularly. You're also right that the situation is hard to grasp. I think, at the root of things, she has believed since she was diagnosed with cancer that she's going to die soon, and she refuses to believe any evidence to the contrary. Her self-neglect leads to a downward spiral, which will eventually end up a self-fullfilling prophecy.

At the moment, she's inpatient at the hospital and had a tracheostomy on Monday. The bright side is that the hospital does not like to take no for an answer to physical therapy. On the other hand, now we've got a trach and a feeding tube to care for. Only 3 skilled nursing facilities in my city will accept a trach patient, so even for rehab the options are limited.

I'm hoping we can use whatever resources either the hospital or the (after-wait-list) rehab facility to figure out who can accept her from there. She certainly cannot be left alone 12 hours a day while my sister and I work to keep roofs over our heads. But her (and our) financial resources are limited, and she will have to spend down to get to medicaid. I don't know how much help medicaire can be, but again, I hoping to tap the social workers to try to get some idea about that.

Thanks for listening to me ramble. This has been a long week, and I am trying to look at the hospital stay as having a silver lining to helping get her to better ongoing care.

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Middlegirl-Sideways
I dont have anything practical to suggest, but please know that I send you cyber-support. You are in a very tough place.

Sending strength,
MG
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timothyhadl
Hi friends , i am suffering from pain an i don't move here and there due to pain and now i want cure at home.
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Sideways wrote:
Feeding tubes.

So... it turns out that after a little googling, I have discovered that feeding tubes and elders is more of a hot issue than I realized. From what I gather, the issue is usually in whether to place a feeding tube in an elder who cannot feed themselves due to dementia. That is not what led to my situation, but it is polluting my search results so much I'm getting frustrated finding good information about elder care options when there are feeding tubes involved.

Short story for those who don't remember: my mother was diagnosed with throat cancer and underwent chemo/radiation. It is not unusual for head/neck cancer patients to get a feeding tube during treatment even if the cancer itself isn't intruding on the throat because the radiation itself makes swallowing very difficult. However, my mother, now 69, isn't participating in her own recovery. Not doing the throat/swallowing exercises necessary to relearn how to swallow and get off of the feeding tube. So the tube is a fact of life for the foreseeable future. And she is becoming less and less engaged in the world in general. Not exercising, not cleaning up after herself when she makes (horrible) messes in my sister(primary caregiver)'s house.

The short of it is that there needs to be additional help. I don't know if it needs to be in the form of a visiting service or an inpatient location, but she is behaving in ways that are increasingly dangerous to herself and the household pets.

The sticking point is the PEG (feeding) tube. Apparently, a lot of services are not legally allowed to be provided if the patient has a PEG tube. For example, assisted living is not allowed to take patients with feeding tubes by law in this state (Florida). Does anyone have any experience with what kind of services do provide for patients with feeding tubes? Are there visiting nurses? Is nursing home the only option?

My sister and I are being held hostage by her feeding tube and her refusal, for whatever reason, to work to get off of it. I just spent the morning at the hospital getting the tube reinserted after it came out, since she won't care for it properly. I'm exhausted of the situation, and I don't even live with her. I'm just hoping that someone else has "been there, done that."
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FJC
We find that many home care / elder care residences won't take patients who have feeding tubes.  Why?

Does the VA (Veterans Administration) hospitals take them?
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