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Firstly, we ended up having to change agencies after the initial visit because they didn't have everything we need. We haven't done the initial consult with the second agency because it was just changed. But, here's some of the issues that are driving us crazy:


1) While still receiving care from the first agency, the nurse wanted to come out to the house without giving us at least 24 hrs notice. We got a call that morning (around 10:30 am) that she wanted to come out around 1:30 pm. We were actually in the hospital and she left the message on the home phone (landline) so we didn't get it until about 6 pm. She said that if she didn't hear back from us, that she would assume it was ok to come around 1:30. Then she called at 1:30, said she was running late and she wouldn't get there until 2:00. I don't know if she showed up because we were in the hospital. It was around that time that the orders were put in to switch us to a new agency.


2) It was 5:15 pm, we hadn't even gotten home from the hospital and the nurse from the second agency called the landline wanting to come out the next morning before 11 am! We (my cousin and I) just spent three days standing in a hospital for like 6-8 hrs a day (there were no chairs in the room and none nearby) and we were exhausted. I was hoping to rest up, but this witch of a nurse insisted upon coming out. We finally talked her into coming out a little later. Not ideal, but whatever. I'm not even sure why she's coming out. There's nothing for her to do. We need therapy - OT, PT, and ST. Unless this nurse can draw blood and get it tested then she is of no use.


3) These agencies keep trying to push a home aide on us for bathing. This is for my uncle who has a broken ankle. My cousin (his son) had been bathing him in the shower on a bench for years and no one wanted to help. He now requires a sponge bath because of the cast and suddenly everyone wants to help?. A sponge bath is no more difficult than regular bathing. In fact, the nurses in the hospital did a pretty bad job compared to my cousin. We don't understand why they keep pushing this. Do they get something out of it? I don't understand what a nurse or OT would get out of having us use an aide. More money in their pocket?


4) Basically, we don't want anyone coming out to the house without at least 24 hrs prior notice. We were going to call the coordinator (or whoever that person is) and tell them, as well as telling anyone who comes out there. Is this ok to do? If they insist upon coming with only a few hours notice, can we refuse to let them enter without them calling protective services? I was thinking of writing it (not to come out without 24 hrs notice) on top of whatever paperwork we have to sign.


We do have lives. Maybe we want to have people over or have a family party. Or maybe we need work done in the house. Or maybe we want to go out somewhere. Or maybe we just want to sleep and relax. They say they care about caregiver burnout and don't want us to wear ourselves out. But they're making us crazy. What's going to wear us out is these a-holes pushing us around and wanting to come out without advanced notice. We HATE having them come out (especially the condescending ones), but understand it's necessary. We don't like it, but we accept it because it's important. We aren't social people - it's a genetic trait. We like for people to leave us the heck alone. Dealing with people for one hour is more exhausting than a day of multiple heavy transfers, cleaning up pee, wiping butts, listening to groaning (from Alzheimer's), and having to specially prepare meals. These won't even give us time to get a normal routine going.


Any advice would be greatly appreciated. Thank you.

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Okay, I will try to explain how it works. I had to do this many times with my mom.

Let me first say that the insurance works as a ‘package deal.’ Think of it as a bundle. I was glad to have someone bathe mom. Same thing with the nurse. They require a nurse. A nurse has to monitor everything.

Express any concern to the Home Health company for them to address it. They will address their employee.

Yes, the scheduling is a pain in the butt! I hated it! Your house will become consumed with constant rotating therapists but that is what it takes for the patient to heal.

They are supposed to call the day before. Most of the time they do. They can’t pinpoint an exact time because they have a full load of patients. So you have to be somewhat flexible. They will juggle as much as possible but it is a give and take kind of thing.

Home health really does help tremendously. Best wishes to you and your family.

If you have any other questions I will try and help.
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Hi Kate, I also had a bewildering experience with the system of Dr's and the Home Health nurses. PM sent, you can access it through your profile page. A word of warning, you do have to attempt to cooperate with them, they will call protective services. Does your uncle need skilled nursing care? Is he amenable to go to a nursing home?
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NeedHelpWithMom Dec 2019
Yep, the nurse is sent to monitor. There was one nurse that I did not care for either. It can get touchy.
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There are different Nurses. One is the admitting nurse. The other is the one who comes out 3x a week or so. And yes, you have rights.

My Mom (Dementia) had been living in her own home before the hospital visit that determined she could no longer be on her own. So we "quickly" moved her in. That meant getting stuff from her house to make up a room for her. She was discharged on Friday morning, I got a call not long after we got home from HC asking if a Nurse could stop by. I said no. We had just gotten Mom home to a new place. That she and I needed to settle in, it wasn't a good time. Monday would be better. Then came the therapist, she wanted to come at 8 in the morning. Sorry, no. Mom didn't get up till then and I wasn't waking her any earlier. I had to get her up. dressed and fed. So 10am would be better. OT was always in the afternoon. The aide came early but that was OK because she bathed and dressed Mom.

I have never heard of a HC agency calling APS because a family does not work within the agencies timeline. Homecare is a choice. You can turn it down. You can request a different nurse, aide or Therapist. If you become difficult, they can discharge you. The only way APS can be called is if there are signs of abuse. No food in the fridge. The place is filthy.

Yes, they need to give u 24 hrs notice if they are visiting other than the times that are scheduled. But...sometimes they may have a client cancel and are in the area and figure they will kill two birds with one stone. In my position, I was always here. They have many clients. They should try and work around your schedule but it always can't be. You have to be flexible.

At time of admitting questions are asked one is do u need an aide. The answer for Uncle was no. The only reason I can see them pushing it would be if they had aides they needed to be working to justify keeping them on. Remember, Medicare pays for HC. HC can only charge for what they do.

I worked for a Visiting Nurse Agency as an Admam. My boss told our Nurses that they are going into peoples homes. As such, their job was to go in and do what the doctors orders said. They could suggest but not force their opinions onto the CLIENT. Thats how u need to look at HC, you are a client and can fire them whenever u want. They too are inspected by the state.

Like in an AL or LTC situation, you are a RESIDENT. This is now your home and u have rights.
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I also hated having people in and out of my home, many times not knowing until the day of. I still get annoyed when they try to change the aide schedule at the last minute. You must accept that flexibility is the way to get through it.

Once the admitting nurse determines what services are needed, the case manager nurse will usually visit once per week and they sometimes can at least come the same day each week. That helps a bit. At least you know the day. If you get a nurse you butt heads with, ask for someone else.
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