Our mother, age 93, has advanced dementia. She is bedridden Other than Hospice Aide, my wife is her only caregiver. Hospice started at 2 visits/wk and increased to 5/wk at our request. Now they are reducing back to 2/wk, without explanation. When I asked they told me doctor (who has never seen her) changed her Plan of Care.
My friend passed at the end of last year with hospice care in home. She had to pay for her own 24/7 care as she was without friends and family to cover her needs. Very expensive. I was amazing that they could haul in tons of equipment, but people were a rare commodity.
Discuss hospice care and coverage with the agency itself. I hope you will learn more from them. I am surprised you had the bump up in care in the beginning. The RN visits are often bumped up toward the end. Otherwise it has, sadly, become rote.
I sure wish you luck.
A nurse should be coming once a week as well as the aides. This nurse should be an RN on some of those visits. I forget the frequency they are required to see an RN.
Again, sometimes they are spread thin but the RN is required to come on a regular basis, just not every week. That might be an LVN for example.
Also the doctors rep comes on a regular basis. It is usually a NP or PA for the doctor. I think it is required once each recertification.
The feedback from their staff is how they supposedly come up with the care plan. The hospice doctor has to sign off on it. It should also include feedback from the family.
Ask them to go over the care plan with you as to what has changed with your mom that enabled fewer visits. Mark on a calendar when they actually come. Also you should be receiving a summary of charges to Medicare on a regular basis depending on her insurance company. You can check that the number of visits they are charging Medicare matches up with your own calendar. I know at certain stages the aides visits are the ones that really matter.
I have an agreement with my DH aunt’s hospice that they will see her daily and she is in a NH. Occasionally I will discover that she is not being seen on the weekends and I remind them of our agreement and they start it back to seven days. I think this daily aide is pretty unusual based on what I have read on the forum. I have been using the same company for years, first with home health and then hospice. So we have a decent working relationship.
You can call other hospice companies and ask them what they offer. You aren’t required to stay with the same one.
I know not every hospice provides the same services. And not every location has multiple hospice companies to choose from.
DH aunt is also bedfast and has dementia. She is 96 and had this same hospice at home before going to the NH.
Make sure your wife has help. Encourage her to get away often if only for a walk. Ask for help for your mom from extended family. Ask the hospice if there are volunteers who could sit with your mom on occasion. Let them know you really need the help.
Nurse 1 time a week
CNA 2 times a week maybe 3 times a week
Social Worker, Chaplain and other team members 1 time a month. (in some cases Social Worker will make weekly visits)
Unless there is a medical reason for more frequent visits that is the typical schedule.
All Hospice Teams have meetings 1 time a week. These are called IDT meetings (some Hospice might use another term) But that stands for Intra Disciplinary Team. That is all the members of the team gather to discuss each patient on that team. So while the doctor that is assigned to that team may not have seen the patient they are FULLY aware of what is happening with each patient.
So the doctor assessed mom and what is going on with her and her care and determined that she does not need visits 5 days a week.
If there is a medical reason you can ask to talk to your nurse or the nurse that is in charge of that team.
If you are using the staff to help more and do more then it might be that you need to hire a caregiver in addition to what you have now. Or you can request a Volunteer that can stay with mom while you can go out and get some errands done or have some time to yourself. However the Volunteer can only stay a maximum of 3 to 4 hours and they are not able to do ANY "hands on care".
His nurse came out once a week and the aides came twice a week to bathe him.
That is the "norm" when under hospice care. They will only come out more than that if there is some kind of an emergency.
Even towards the end of my husbands life(when I needed them the most)the nurse only came out once a day to change his pain pump out and then left. That probably took about 45 minutes, and then she was gone, leaving me to have to listen to my husband holler in pain and make all kinds of horrible noises.
Most people don't realize that even with bringing hospice on board that 99% of the hands on care still falls on the family, which in my case was me.
I had to hire an aide to come every morning to put my husband on the bedside commode so he could poop. Perhaps it's time you look into hiring some outside help to come in to assist your wife, so she doesn't get burned out as it's hard work being a caregiver, this I know all too well.
Have you considered researching other hospice providers to see if any would have an ‘end of life’ hospice facility available?
You can switch to a new hospice provider at any time. We switched from one to another in order to receive the best service possible.
Best wishes to you and your family.