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My mother has been largely bed bound for a year or so, after a stroke and several serious UTIs that have led to sepsis and hospitalization. She is in her home with 24/7 care and has the most wonderful health aides anyone could ask for (all covered by Medicaid - a miracle).

A nurse (from Visiting Nurse Service of NY - a wonderful organization) was visiting her 3 times a week to clean and dress a bedsore that isn't bad at this point, but it persists and needs to be tended to. I had no idea these sores were so hard to heal. Her aides tend to it the other four days.

We put her on hospice care through the same organization a week or so ago (obvious that it's time for that), and now a nurse only visits once a week. Today this new nurse told the aide that she will have to train ME to clean the sore because the aides are not technically allowed to do this (but they have been doing it anyway, plus the pre-hospice service nurse came 3 times a week.)

There is NO WAY I am going to get anywhere near my mother's bedsore!!! It's right above her butt. I am very squeamish, don't want to see her naked, plus she would never allow me to do this. She is tended to by trained aides 24/7. What if I lived far away? I am shocked that they expect me to do this. I called and left a message and said no way. Waiting to hear back. 

Anyone have experience with this situation?

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The whole point of Hospice is to support people who are dying and their caregivers, if they are giving you less support than you were getting before then maybe you should reconsider - or perhaps look for a different agency.
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Xinabess,
Any place (hospital, home health, etc.) will put the responsibility of patient care on the patient's family. Don't accept it!

I used to be a visiting nurse. I had a patient who needed daily dressing changes. The lady was told she had to have her husband do her wound care. She flat out refused. She didn't trust that he would do it right and she didn't want him to see it. She "won" and Medicare paid for the visiting nurse daily. There was something about her not being able to drive to a facility to have nurses do the wound care there. Your mom would qualify in that area. (That was in San Diego, California area.)

Stick to your guns. Refuse. And if you have to change back to the other situation-do so.

In trying to save money, I think we've gone too far.

As far as I know, an unlicensed medical person can NOT do dressing changes. Only a nurse (LVN or RN) may do wound care.
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I absolutely love this question. The answer also to me is a resounding NO, you're not supposed to. This has gotten crazy out here, for them to expect that. Like people said here, why are they there? And what sense does it make for someone who doesn't have any experience doing health...to do health care? One goes to school for years in the medical field. Just last week with my 93 y.o. grandmother in the hospital due to a heart condition; on her behalf, I asked a nurse to help her go to the bathroom. She blinked at me (I somehow knew she would, this is what's going on now). Though she wheeled her there and helped her, I found her down the hall waiting for this nurse. I wheeled her back to the bed (this was in the emergency room at the time) and then the nurse suddenly appeared; I asked her to help her into the bed. The nurse goes, "If you loved her, you would help her". I sternly replied, "That's YOUR job. And it's also exactly why I WON'T move her; because I love her and don't want to end up hurting her! Don't try that guilt trip on me"! So, she did it. I explained to my grandmother later where I was coming from, and even she said, 'you know how some of them are'. I believe the health care industry is just trying to cut back so deeply, they are putting families on the 'hook'. But then, that's obvious!
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Since when isn't a bath the nurse's responsibility (or at least the aides).
And not helping someone to the bathroom? Unheard of, but I guess it happens.

A quick story-speaking about that;
I had been a nurse about 5 years (still working the night shift), and I checked on one of my patients at the beginning of the shift. He was old, blind and had one leg amputated. He was SO grateful that I came in because he had to use the commode for hours but couldn't get up. He couldn't see the nurses call button. I got him on then back to bed. He called me his angel. I tucked him in and had a grin like a Cheshire Cat for a the rest of the shift.
When I came back the next night he had been discharged. But, sitting on the counter at the nurses station were 12 long stemmed peach colored roses with a card; To Nurse Sue-My Angel.
Wow-just for doing my job!
Gotta' go-I've got the tears flowing.
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Workinhealth,
I think you missed the part that aides CAN'T do dressing changes. At least I'd like to think your response was because of that.

You and I both "work in health" and I have no trouble changing a decub (bedsore) dressing. But a LOT of people can't handle that sort of thing. They are scared they will mess up, they are repulsed by the wound, they have privacy issues, weak stomached, whatever. There should be some help for these families.

Yeah, I know they have 24/7 help (which is a blessing) but so would OUR care be covered.
I don't think that this situation is because of wanting more free services. They just can't bring themselves to do it.

As a side note;
I find it most unusual that an aide (someone with minimal medical training) can NOT do wound care but the FAMILY (who usually have NO medical training) is instructed then is supposed to do it. Most times the family doesn't have as much medical knowledge as the aide does!

When my grandma was sick in bed, my mother couldn't even carry her bedpan (with urine) to the bathroom without heaving. Most folks aren't cut out to do what we do. (And I'm sure I couldn't begin to do 1/10 of what they do!)
We all have our calling.

I don't see why the hospice nurses can't do wound care. I would call the hospice director and have a chat with him. Tell him it's not a "curative" treatment, it's for her comfort. That should make it qualify.
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When my aunt's needed wound dressing, Medicare payed for the HH nurse to do it. Even came out on the weekend to do it. She wasn’t on hospice. She lives alone.
Xxxx
Once when I thought my mom was going to come home with a Catheter I was told by HH that we would be trained to handle it. I told them there was no “we”. She lived alone. Thankfully she didn’t have to keep it and we didn’t have to push it further.
Xxxx
Another time my husband developed MRSA and had to have wound debridment, cleaned, medicated, dressed three times a day!
I thought I would faint when I learned I would be the one doing this. But I did it. Found out I was pretty good at it and I am not a nurse nor do I want to be.
My Husband is not on Medicare so that wasn’t the issue. Other opinions were that three times a week was good. I trusted the surgeon knew best when he said three times a day.
I am terrified of MRSA and wanted him well ASAP and he was. So there is that to consider.

Sometimes we have to do what we have to do but I agree with all who say hospice should handle this.

It is very important to figure out the right way to make your request in order to enable the person you are speaking with the ability to say yes.

You have to understand their limitations better than they do so you can guide them to the correct answer.

If they are short handed etc they can justify ( to themselves) the refusal without giving you the real reason why they are saying no.

If you know the way to get to yes, present your request that way.

Make it easier for the agency to say yes.

We don’t always have that information. But when you get it, don’t be afraid to use it.

One more thing on this subject is that if you have the choice consider the benefits for working with an agency that has a HH and a Hospice division.

The HH wants your future business when it’s time for Hospice. It generally all pays the same to the nurses but management can make decisions on how they want to run their agency and what they are willing to do to keep you happy.

Sometimes you’ll get mixed messages on this forum. We all answer from our own experiences or beliefs. I try not to take it personal when someone implies my advise isn’t correct. I’ve just had a different experience than they have. Government agencies are very complex and sometimes open for interpretation. (Just look at our tax system.)
No one knows every detail and it’s very difficult to capture all the nuances from a single posting.

Good luck with your mom and let us know how it’s going.
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We experienced this after my mother had a double mastectomy at 78. I was horrified to learn that she would be sent home with drains coming out of her body that we were trained to drain and measure. I couldn’t believe it! What if she had no family? At the time, the whole family just sucked it up and did it (brothers, sisters, and even one grandson). We were all afraid to do it wrong. And my mother had several excellent health insurance policies in addition to Medicare. I didn’t know that we could refuse.
      That was almost ten years ago, and I have heard that hospitals are now incurring fines if a patient is sent home and then lands back in the hospital within a short period of time due to being released too early or without proper in-home care.
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Should Xina give up her job ( she supports two teenaged children) and become a drain on the welfare system?

Stop being stupid. Xina's MOM is indigent and near death. Your cruel comment is uncalled for.
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Thanks, all. It is interesting to hear your perspectives. The hospice org is providing wound care 3x week now after I made it clear that I can't do that. My mother's sore is very small and she has the mattress to prevent them, plus her aides turn her and care for the wound, even though we can't tell the hospice people that.

These rules are bizarre. Why would it be better for me to tend to the wound, when I have no experience, am squeamish about blood in general, feel uncomfortable looking at my mother naked, and know she would be very upset if I were to attempt to try something like that?

Technically, I am supposed to be the one who fills my mom's pill boxes with her pills, but obviously the aides do that because I am there randomly. If the boxes are empty, are they not supposed to give her her medications until I visit again??

It's a weird "don't ask, don't tell" kind of thing.
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xinabess: Please inform them that you are NOT a trained medical professional so there is no way you'll be doing the dressing change. While I was living with my mother in another state, my husband was severely bitten/attacked by a cat we had taken in and the hospital he was in said to him "You'll have to change your own wound dressing." He said "There is no way I can or will be doing that." They set up a visiting nurse to come to the house. I shared that with you so that you can tell them that is what you need done. End of discussion.
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