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?
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.
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?
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!
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.
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.
Stop being stupid. Xina's MOM is indigent and near death. Your cruel comment is uncalled for.
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.
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.
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.
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.
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.
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.
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.
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.
If you don't provide the service, you can't be sued for not getting it right.
Not saying there aren't some lovely Doctor's out there..............just that politics and bureaucracy seem to have drowned some of that out.
'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.
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.