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?
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.
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.
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.
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.
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.
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.
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.