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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 reason all this is happening is that government is the largest player in health care and health insurance now. Whenever you have government involved, you have increasing costs and decreasing quality and access. In health care this results in skyrocketing costs, sub-standard care, and rationing to cut costs.
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I quite agree with the responses that question why it is that an aide can't deal with the bed sores, but can teach a family member to do so -- just plain illogical!! And I do agree with firmly but civilly insisting that nurses and aides attending your loved one should be dealing with all things medical.
That said, I share TreeArtist's response as well -- my best friend had breast reduction that ended up with drains that needed to be cleaned daily. I never thought I could handle putting my hand inside someone else's body -- the 'holes' were quite deep -- but after the first time (and my friend reassuring me that I wasn't hurting her), I found that I could do it. There was a homecare nurse checking on her every few days -- and making sure that I was doing the right thing in between: that made me feel competent to continue. While I don't think family/friends should be forced to do this medical care, some of us will be able to do so if we choose to try. And for us, perhaps there is a bit of wisdom gained in knowing that we have lost some of the squimishness (at least that is what is was for me) about dealing with the needs of bodies.
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Hospice is paid a flat rate for each patient. Like 4 or 5 grand a month. All the costs come out of that, equipment rental, employee salaries, care items, like briefs, bed pads, wound dressings ect. So...its up to the hospice to provide care out of that. Most people are pretty ignorant about the medical field and just do whateber we recommend (not you, just a lot of people). If the family isn't an advocate or if families just take what hospice gives them and don't know how it works, you're loved one is not getting what they should. I guess my point is it's a lump sum, not per visit or whatever. Unfortunately some companies try to get away with bring cheap
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If Mom is tended to by 24/7 aides, that should fall under their responsibilities.  However, if a nurse told you this - it could be because the aide is not trained?  I haven't run into this situation but I did have to learn how to clean and tend to my DH's wounds and it really isn't as gross as it sounds.  My DH had a "scabby" Lymphedema on his foot, that was as big as your hand - and I just kept it clean and tried to keep it from growing.  We learned a year later that it was Lymphedema and we were lucky it didn't climb up his leg.  FYI, silver products helped it to heal, finally.

HOWEVER, what the nurse told you is true - Home Health is supposed to teach us how to tend/care for our loved ones.  I guess Hospice is under the same rules?  I live in a rural community and we've been most fortunate that our Home Health has been glad to assist me whenever possible.
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My MIL was sent home after cancer surgery on her head with a drainage tube, and my husband--a truck driver--was told how to care for it. He was totally unprepared, didn't know how to address problems, how much bleeding was too much, how to properly apply and remove dressings.
I understand that Medicare has its limits, but she could and would have paid for proper care if it had been ordered.
Are doctors and hospitals limited by Medicare rules in the care they provide or order?
Even if a patient is willing to pay for it herself?
Is this government-mandated or what? MIL wasn't offered the choice. She should have been recovering in a SNF, but she was under the impression that she'd be back at work in less than a week when she left the hospital.
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Hi, I'm a hospice RN/case manager and most reputable hospices will require a nurse to see each of their patients a minimum of twice a week. I frequently have seen persons requiring wound care 3 or more times a week. While its frequent for family to provide dressing changes after being taught, it's certainly not expected if they don't feel comfortable...at least in the organization I work. I would personally recommend requesting the nurse provides this service. Hospice is a competitive industry (seems a bit weird to me, but their revenue is census based unfortunately), and you have the power here. I would tell them you are considering switching to a hospice that would provide this (which you have every right to do).
They most likely will honor your request. But if not, interview other hospice companies that serve your area and ask them straight up if that is something they would do. I can almost guarantee you would find they will.
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xinabess: IMHO, I think it's appalling to expect a non-medical professional to change a difficult wound dressing or for that matter a simple one. My husband said NO WAY!
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CNA's can not give medications.
If however you have hired them privately you can instruct them what to do and this includes giving medications.
I discussed this with a CNA that I hired privately. Once I explained that hes was my employee and I could instruct her what to do then she could comply. If she were working for an agency or in a facility then as a CNA she could not by law give medications.
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I may have said this before but Medicare seems to think people can do their own wound care if that is all the care they need. My daughter is a Wound care nurse and is trained to know when a Wound Doesn't look right. Which I don't think a layman would know. I had a Dr doctor tell me the wrong thing to do for Moms wound. TG for my daughter. She took care of it. PCP said the wound heeled really well. Good u stood up for yourself!
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Xinabess,

Thank you for being refreshingly honest. It's bizarre to me as well, what's expected of people just because they're family members. Does that automatically make us health professionals? Strange. And just as strange is that people don't question things. They've been suffering for years in the name of 'love'. I said to someone that I didn't have to keep proving my love for family by having to keep doing for them. I will do what I can, but working on no more guilt tripping. Anyway, you will free yourself and others too, by questioning the status quo and helping to break down the walls of silent suffering.
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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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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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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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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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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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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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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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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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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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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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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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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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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'd hire a different hospice company. You are allowed to do this once every certification period.
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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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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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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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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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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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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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