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I always thought hospice would be helpful. Instead the workers are looking to me to do the “heavy lifting” when they are here working with my mom. I’m already exhausted, they won’t teach me how to do transfers (mom is bedridden and can barely bear weight on her feet) and hasn’t been out of her bed since November 22. I had to teach myself how to change her diapers and linens with her in the bed. Thank God for YouTube. This feels more like elder abuse than hospice, and every inch of me hurts from trying mom refuses to hire an aide, she doesn’t want more “strangers” around. That’s good for a separate post.


And don’t get me started on pharmacy/prescription errors and oversights.


Thanks in advance.

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Have you contacted the hospice RN or social worker to ask for clarification of who should be doing what?

Hospice provides comfort care and a bath aide (in my area). All the rest of patient care is expected to be done by others--family or hired aides.

Your mom's care sounds like it is WAY too much for one person. She can either hire help for her care or she can go to a facility. Those are the only two choices at this point.

Sometimes there are no GOOD choices, only less bad ones.
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Too bad mom doesn't want more strangers. What will she do if you end up hospitalized or dead.

Hospice provided my sister a nurse, every other day and a bath aid 2x weekly. We washed her hair as she was completely bed bound and her hair was very long. They ratted it to the scalp and it took 3 of us 9 straight hours to unrat it the one and only time they washed it.

You can't do this alone, make it clear to mom that you get help or she has to go to a facility as the current situation is killing you. Those are the only choices she has, period end of discussion.

I would be looking for a different hospice if the screw up on meds is a regular occurance. I would report them to Medicare and the DHHS. That is just sloppy business and needs to be addressed harshly.
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OMG!!!!
I would contact the Team Manager right away and let them know that the CNA's are not doing what they should be doing.
They should be teaching you how to properly care for mom, how to safely change her, transfer her and how to properly use equipment that they should be providing. At least a Hoyer Lift and the various slings that can be used.
If you get no response from the Team Manager Ask to talk to their supervisor.
I would also be searching for another Hospice. Interview the ones that are in your area and pose "theoretical" questions, like the problems you are having and see how they would address the situation.
There are 2 basic types of Hospice a FOR profit hospice and a NOT for profit. I would find out what type your Hospice agency is. (I/we use a NOT for profit and I think that might make a difference.)
You should have at the very least a Hoyer Lift and 2 slings.
And you should have been taught how to change her positions as well as how to change bedding and change her while she is in bed.
The medications should be delivered to you and checked against what is ordered and you should refuse the medication if it is wrong and the proper medication should be delivered that same day. (there were times when I would have 2 medication deliveries in one day because they would add a medication after the regular delivery went out.)
Please consider changing if the current Hospice does not properly address your concerns.
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You need to speak directly with your hospice. The care is getting less and less and worse and worse and what was once a marvelous blessing has become a business in which an RN comes THIS often, an aid to bathe comes THIS often, a Social Worker calls you, a pastoral advisor calls you and medicare pays for this. You need to find out exactly what you can expect from YOUR OWN hospice. If it is not enough you may need in facility care, or to hire your own aids. It is sad, but it is a fact of life.
I am so sorry you appear to have a less than stellar team there but tell them now you need a sit down plan of care going forward.
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Hospice is not there to do the "heavy lifting." In fact they are not allowed to(at least that what I was told by them).
My husband was completely bedridden and under in home hospice care for the last 22 months of his life. The nurse came once a week to start, to check his vitals and such and an aide came twice a week to bathe him in the bed. Hospice will change the bedding when they're there to bathe your mom, but you have to ask them and they have to put it in her orders.
I had to hire an aide to come in the mornings to put my husband on the bedside commode so he could poop. That was a Godsend, as it's much easier to clean up someone when one person is holding them up and the other wiping and washing them. Also much easier to get a diaper back on them.
Hospice does supply any and all needed equipment, supplies and medications for your mom all covered 100% under her Medicare, but you do have to stay on top of everything with them. I had to call them on regular basis, just to make sure my husband received the care he deserved.
Honestly even with having hospice care, I still was responsible for 99% of my husbands care. And it used to make me angry when I would see what hospice was charging my husbands Medicare monthly for ME to take care of him in our home. It started at over $6000 a month and towards the end it was over $15,000 a month. They were making all the money while I was doing all the work. There's something just not right with that picture now is there?
Stay on top of them and if you're just not pleased, seek out another hospice agency in your area, as you should have access to more than one. Best wishes.
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This is my opinion when it comes to lifting. It is the CNAs job to do the lifting when they are there. That is what they are trained to do. I think they should have also taught you how to care for the person when they aren't there. This I would have discussed with the Nurse because they answer to her.

The prescriptions are the Nurses responsibility. She should be checking to see if they are correct. Either she is making an error when ordering or the pharmacy is. If its the pharmacy, this is a big no no. Pharmacy techs actually dispense the drugs. The Pharmacist is to check them for accuracy and sign off. When my daughter worked rehab/NHs, pharmacies were fired for mistakes.

I suggest you call the pharmacy and question what was received. See if it matches what was ordered. Then take that to the supervisor at the Hospice. A doctor has to write the prescription. They need to be made aware that the prescriptions are not coming as ordered. This is serious if the Pharmacy is the problem. Their inventory has to match the prescribed amounts or the DEA gets involved. Someone is not doing their job.
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