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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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Do they perhaps mistakenly think you live there?

Hospice is paid for by Medicare. Is the VNS nurse covered through Medicaid? It doesn't feel to me that your mom should be getting less care now.

Hoping someone will come along and have a good answer for you, Xina.
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Everything I've read about hospice (and any visiting nursing care) is that they will not be available daily, one of the expectations of care in the community is that family picks up the slack. CNAs are not allowed to do wound care unless they have taken an extra wound care course and are certified. That said, anything is possible if you have enough resources, perhaps you can hire a certified wound care nurse.
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So the aide is technically not allowed to clean bed sores, but is allowed to train someone to do it?
And the someone could have less medical training than the aide but is required to perform the task?
Sounds illogical.
What if you're not living there like Barb said, or you are sick or you're disabled (just to make a point), will they just leave the task undone then?
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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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I called and left a message. If necessary, I will transfer her back to non-hospice care so she can get the 3x week wound nurse. This makes no sense at all. Is the idea that if she's on hospice, you just let her wound progress and let her die of the infection unless a family member is available?? Obviously, our aides have way more experience with wound care than I do.

In the past, a nurse has shown our aides how to tend to the wound, not me. In fact, the nurses who did the hospice intake (not the same as the new 1x week nurse) showed the aide what to do. No mention of me dealing with this at all. I would do a much worse job anyway, especially since I refuse to look at her naked in her current state and she would not want me to see her either.

She doesn't need daily care, just 3 x a week. And I can't be there that often.

Argh. If it's not one thing, it's another!
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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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Stick to your no, my sister had bedsores and hospice dealt with them. Tell this nurse that you would be happy to replace their services with a company that actually did what they got paid for. I had to pull that trigger and let me tell you, it made a huge difference, no more nonsense or long delays. I'm not sure but maybe they don't get paid if you fire the hospice. Best of luck.
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My daughter is an RN wound care nurse. I worked for a Visiting Nurse facility and our RN nurses did wound care. One reason...because Medicare wouldn't pay for wound care. We were a nonprofit facility taking care of people without insurance or Medicare didn't cover. Hospitals sent people home expecting them to care for their own wounds. We had one man who lived alone and he was expected to care for a wound in the middle of his back.
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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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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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I am going to be the bad person here! She has 24/7 care paid for by the taxpayers and you are complaining that you have to help care for your Mom. Get over yourself, learn to help care for YOUR Mom. I am so tired of people complaining when they are using taxpayer money!
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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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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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This reminds me of my Father many years ago. He was in uarntine for an infection cause by appendicitis. On one of Mothers visits she ask the nurse when was the last time they bathed him. The nurse replied that they no ling do that. It was up to the family to bathe the patient.
Not a good thing to tell Mother since she was a former president or whatever it was called of this very hospitals nurses union and had worked in several positions in this very hospital as an LPN.
Also Daddy was expected to use bed pan, which he had difficulty in doing. He always felt like he was still full. Mother was able to get a bedside commode since he could not walk the distance to the bathroom to empty himself.
Wound dressing was still done by the nursing staff. I don't know if that is still working today.
Helping the staff with some of the chores for the patient is one thing but, doing their job for them is entirely different. I helped he nurses with my wife while she was in rehab but things would have had to get really bad before I would do their job for them.
Nurses should nurse.
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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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The reason the family can do it and not an aide is that family or a friend you select falls under "good Samaritan" but an aide falls under the licensure level and he/she can get in trouble practicing outside of their credentials. Additionally, Medicare is not Medicaid. Medicare offers "Skilled wound care" Medicaid offers long term care. The program your mother is in is known as a "nursing home diversion" program. Hsopice is typically under Medicare but works with Medicaid. When her level of care/need exceeds what you and a homes health aide can give then it is time for a nursing home. It sounds mean but the program was never to be 24/7 365 with every need met. That type care is in a nursing home and is actually less expensive and has more over-site. A nurse is there 24/7 to attend to a wound or medication or suction - skilled needs.
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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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I'd hire a different hospice company. You are allowed to do this once every certification period.
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I will be the first to say that this may not be everyone's calling though I took care of my Mom's wound. My Mom developed a stage 4 tailbone sore in a Medicare rated 5 star nursing home. After she was hospitalized and went to a different nursing home for rehab, I was shown the sore by the wound doctor's nurse. At first I was shocked by this as a stage 4 means bone is visible. I began to read up on these and ask many questions on how these are treated. After being hospitalized again for a UTI eventually she came to my home. I was trained by a wound nurse in the hospital Mom was in to clean and dress this wound. Mom went on hospice so the nurse would check the wound a couple times a week, and before that I took her to a wound doctor every couple of weeks, sometimes once a week. I did not know wounds could tunnel and that they can frequently cause NO pain though deep.Thankful for no pain. I did even work with a wound vac, which was tricky, which her wound doctor prescribed. In time I got the wound to shrink up 50% using some protein in her diet peanut butter toast, etc. (though you have to be careful because of the kidneys), and I used colloidal silver spray in the dressing. This left me marveling at what can happen to the human body, but at the same time I learned to appreciate what nurses and doctors must do each day. This is how I approached this tough part of care giving, as a learning experience. If you don't think you can see such a wound, or are squeemish in any way, please get someone to help.
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I just finished 6 months with my sister-in-law who had massive wounds she did not tell is about. She hired the hospice and the have 5 days of regular nurse care and an side. Weekends the had their on-call nurse change out the wounds. Our 24/7 sides were technically not allowed to change and clean the wound. They were allowed to change the bandages. We were in Cleveland, Ohio.
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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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Thanks everyone. Fortunately, they heard me and are arranging more nursing care. The aides take care of the wounds anyway, but because they are with an agency, for some reason they are not technically allowed to, so we can't tell the nursing service. I guess it comes down to liability?

Anyway, that's settled, thank goodness. I know my mother is incredibly lucky to be able to live in her own home and not in a nursing home. It seems to vary from state to state.
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I do private duty caregiving and have done wound care with supervision from either the health dept nurses or private companies. I was not licensed but had CNA training and let my certificate lapse. I find that in my situation I was appreciated by both the nurses and the clients and their families. To put someone who's not trained or unwilling to be is totally unacceptable. Wound care in elderly and frail patients can be very tricky and to put someone in a position like that is irresponsible and reckless. Insurance companies as well as greedy for profit homecare agencies need to be held responsible for causing avoidable harm when anyone is forced into doing skilled care, especially if they were not informed that they could have declined to accept responsibility!
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As to what the Aids can do depends on if you hired them or if they are from an agency.
If you hired them you can instruct them do do what you want them to do. If they are from an agency then they can not by law do a variety of things, give medications, treat wounds and many other things.
If you do not think you are getting the help and support from Hospice that you think you should contact the supervisor and discuss things. There is always the option of going with another Hospice Organization.
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In my experience as a HC nurse, yes, the goal was to teach the family on how to do woundcare. If not on hospice we (the agency) could get 3x/wk dressing change orders for maybe 2 weeks (Medicare doesn’t like 3x week visits but will approve with valid medical justification for a short interval), as we were expected to teach the family how to do woundcare & have the family demonstrate it back. This was only 3 years ago & maybe things have changed but to get SN into a home 3x week for woundcare indefinitely was an unreasonable request to any insurance provider. Else the person should have gone to a SNF vs home if that much care needed & family couldn’t provide it. 
Currently, if it’s an option, have a wound care nurse come & assess the wound & review current woundcare orders with the MD. The MD & RN could take a look at the current wound and maybe determine another kind of woundcare/dressing change. 
I can’t speak to how Hospice nurses are scheduled but thought RN visits in Hospice were at least weekly and then as needed. 
Hospice nurses may not be available to see a patient 3x week. I know there is always a RN On Call with Hospice but I don’t think an on call after hours call for woundcare will be done until the next day. 
Plus, can the hospice nurses do the dressing changes if they don’t have an order?  - thus there will be a need for the hospice to order woundcare supplies to the patient’s home. I am not aware if Hospice can bill for supplies as we could do in Home Care. 

Try an alternating pressure mattress and frequent repositioning every 2 hours for prevention of pressure ulcers. Being terminally ill with no nutrition, it will be a challenge not to develop them. Elevate heels, use booties to prevent heel breakdown. 

This is such a challenging situation. 

Skilled Home care cannot be providing care if a patient is on Medicare and on Hospice . It’s one or the other. We (Home Care) had to discharge & signed off the case the same day hospice began.  The person is not entitled to both Home Care & Hospice treatment at the same time. I think that rule is in 50 states. 
Again, more responsibility is placed on the person’s family due to gov’t policy, thank you very much.  Unfortunately I don’t see healthcare changing in the patient’s favor either. cwillie’s post is correct. 

Please let us know how you all are doing. 
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Xinabess, for me the key point is that you're not there all the time. Skin integrity checks should be carried out every 2-4 hours, depending on your mother's level of immobility. You can get helpful little diagrams with a checklist on the pressure points to monitor.

I have met a good handful of nurses who've made an awful lot of assumptions about what daughters are and what they do. Quite why they think that all women are born with the skills to put compression stockings onto people or cope cheerfully with bowel movements I really couldn't say.
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On the aides' not being allowed to do this job: I blame ambulance-chasing profiteering lawyers. A few months ago one firm ran an entire advertising campaign bragging about how much compensation they'd wrung from hospital trusts for pressure sores and encouraging people to sue. Their half page press ad. memorably featured a bruised peach as the lead visual.

If you don't provide the service, you can't be sued for not getting it right.
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Oh for the days where I was blissfully unaware and thought that people became Doctor's cause they love people and want to make a difference and it wasn't all about the money.

Not saying there aren't some lovely Doctor's out there..............just that politics and bureaucracy seem to have drowned some of that out.
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When were those days, Gershun? Before or after the time when they were in it for the money and prestige..?

'Physicians of the utmost fame were called at once,
But when they came they murmured,
As they took their fees,
"There is no cure for this disease.
Henry will very soon be dead." '

From the tale of "Henry King, who chewed bits of string and was early cut off in dreadful agonies"; one of the Cautionary Tales for Children, published 1907, by Hilaire Belloc.
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As Shane said hospice nurses do try and instruct the patients primary caregiver to take care of all kinds of unimaginable conditions. Some are teachable , some for various reasons are unable to perform certain tasks. I have seen people manage IVs wound care and tracheotomy suction to mention a few.
When a patient is admitted to hospice a primary caregiver should be identified and that is the person who takes responsibility for care.
Medical professionals receive training in many areas so can be called upon to perform all those duties. Any willing reasonably intellegent person can be trained in a single skilled function. Had one case of a man with rotting sores on his leg who needed daily wound care. The CNA did it during the week and the on call nurse went out on the weekends. Another man had half his face missing and his sister did an excellent job of caring for that wound.
My experience with hospice is that if the need is there hospice will fill it.
Times have changes so much recently that many things considered professional care are now handled by trained amateurs. What is now done as outpatient surgeries used to require days as an inpatient. Babies are born and Mom and infanr sent home immediately. Remeber Duchess Kate and Princess Caroline, they left within hours.
So the bottom line is that it is not unreasonable to expect family members or friends to take on complicated task but if they really can't do it rather than would prefer not to there should be help available.
There does come a time in every caregiving situation where modesty has to go out the window. It just is not possible to be an effective caregiver if this can't be faced by both patient and caregiver. One can minimize the exposure with various strategies as in the case of the OP. She does not need to see her mother naked to dress a wound. Roll her on her side and keep her covered with a sheet or blanket and only expose the area to be treated. No different than cleaning her up after a bowel movement and less exposure than a shower.
Book cared for her bedridden father never exposing him becsause she just did not want to see his genitals. You can wash someone under a towel and roll them over to do the back.
I was taught never to expose my patients but these days nurses think nothing of stripping you naked. It's a new world out there. Personally I no longer care, there is less than nothing special about my body. I don't even like looking at it and no amount of plastic surgery could transform what the years have done.
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