I am thinking about transitioning my mother from palliative to hospice at home care. I had hospice with my father for one week before he passed away and all these nurses did was dole out medications. I also thought the nurses weren't that qualified really in handling end of life patients. But, with my mother she is very agitated, moans and groans constantly but says she is not in pain, so I think medications might be a good option for her. I just need some input on other's experiences (good or bad). So far, the small dose of Ativan has done nothing. Any advice is greatly appreciated.
Hospice should provide Depends, Chuxs, wipes, equipment needed and medication at no cost to the client. As said, a Nurse will only be sent out 3x a week but be available 24/7. You and the Nurse are the only ones that can dispense meds. CNAs just do the bathing. I would ask for as many hours you can for an aide. This gives you time to run errands, have lunch with a friend, ect. Hospice provides respite care, I think 5 days, every so often. They do not overdose or starve people. Those that think that have no idea why meds are given or what happens when the body starts to shut down.
In the post I mentioned I don't think the daughter was fully in charge. Seems parent's sisters had a lot of input. Seemed to have been the ones that talked to Drs and, placed parent in an AL and called Hospice in. Parent had 4 stage lung cancer that had gone undetected. You can't have too many people involved. Hospice should have one person who they deal with. The client if they are competent and someone they have assigned when they aren't. Not saying there are not Bad Hospices but I think more good than bad.
My Mom showed no anxiety until 2 weeks before she passed. It started with a low hum and got louder as the days progressed. Because it agitated the other residents, Mom was medicated. My daughter, RN, says being anxious is not good so better to medicate even if it sort of dopes them up.
My husband was under in home hospice care for the last 22 months of his life, and I believe because he lived longer than they had expected, his care varied from poor/fair to good, but never great, with the exception of some of the hospice aides that came to bathe him. Several of his nurses early on also seemed unqualified, and probably should have retired years ago, but I was never afraid to voice my concerns with them and their supervisor and the 2 nurses my husband ended up with close to the end were pretty decent. Don't be afraid to speak up if you don't like or agree with anything the hospice personnel is doing as you will have to be the voice for your mother, as I was for my husband.
Having hospice in the home still means that 99 % of your mother will fall on you, as they will only have a nurse to come once a week to start,(more if needed)and aides to come about twice a week to bather her.
The upside of course is that her care from them including any needed equipment, supplies and medication is covered 100% under your mother's Medicare.
And even though hospice may recommend particular medications doesn't mean that you have to agree to them, or even give them to her as you will have the final say. There were often times that hospice wanted my husband to take a certain medication, but if it didn't make sense to me or I didn't agree, I just told them no, and they honored my wishes.
I wish you well going forward with the care of your mother.
Since the main goal of hospice is to keep the patient comfortable, that often DOES equate to doling out meds. Since there is no diagnostic testing going on with hospice, what's left to do besides handing out meds for comfort care? Training only goes SO far in the grand scheme of things when death is imminent. My father was on hospice care as well in 2015 when he was dying of a brain tumor; he was on oxygen and pain management too, but when the oxygen was bothering him immensely, hospice took it away in an effort to keep him comfortable.
In both cases, hospice eased my parent's passing and kept them comfortable. For dad, it was 19 days, for mom it was a bit over 2 months, with 8 days of the active dying process. I was very happy with hospice in both cases, but I was also very proactive with both hospice companies and on top of my parent's care, asking for med doses to be increased, etc. I didn't sit by and say nothing.........I made sure I was there every step of the way. I think that helps a lot, too, to be involved in the process, hard as it is.
Wishing you the best of luck with a difficult situation. Hugs and prayers being sent your way.
Make sure you tell the Nurse that is evaluating her that the current medication does little for her anxiety.
You should always be able to call your Hospice at any time day or night if you think you need help, support, guidance. Someone qualified will answer the phone, if they think you need to talk to a Nurse, one will call you back or if it is urgent someone will come to the house.
If at any time you do not think you are getting the help that you need ask to talk to a supervisor.
Personally the Hospice I used for my Husband was phenomenal, I was pleased with the Nurse, CNA, Social Worker. I did not have the Chaplain come often, I think 2 times in 2 1/2 years.
Just as a reminder...you are the one that will be administering medication 99% of the time. If you have hired private caregivers they can administer medication, if you have caregivers from an agency the "normal" caregiver will not be able to administer medication and the agency will have to send a nurse. (Unless your mom can physically pick up a pill and take it, a caregiver can place it in front of her as long as she can take it herself)
If a medication is not working as it should you call Hospice and they can get another medication sent out usually in a matter of hours. (at least that was true in my case)
Sounds like you are emotionally prepared for this, having gone through it with dad. It's not fun, but it is such a peace to know that you are giving your LOs the best 'end of life' care that you can.
No, the nurses do not do much. In home care requires hands on from either family or even paid CG's, although I know of no one who availed themselves of that. It's a pretty personal event. With daddy, we (the family) all took turns spelling mom off so she wasn't exhausted all the time.
Hospice provides stronger meds at higher doses. Usually a benzo (the Ativan) and a pain reliever (usually Morphine or Dilaudid). They are given as needed to keep your loved one free from pain. That is all we had for daddy.
Yes, he was 'out of it' most of the time, but he was NOT in active pain and we never left him alone unless he requested it. He did ask, several times, to be overdosed on the drugs, but they do not give you enough to do that. You have a visit 3+ times a week from your Hospice coordinator and meds are accounted for and new meds supplied.
Daddy also got some physical supplies from Hospice, but I don't think much more than a few packs of CHUX and some rash creams.
Your mom may say she is not in pain, but many EOL patients often don't express pain--it's as if they have forgotten how to verbalize how they feel. You adapt pretty quickly to knowing what they need.
Hospice was a godsend to us and daddy. When the time comes, we will not hesitate to have mother use it, if necessary.
Best wishes. You sound very loving and caring. I hope it goes well for you.
My father was in palliative care, then quietly slid into hospice care w/o any issues or changes. Does your mother's presiding doctor think that she's ready to move from palliative to hospice care?
I think I would try to find the reason for your mother's "moaning and groaning" before considering medicine. There may be some issue that can be addressed w/i the palliative or hospice care spectrum w/o resorting to medicine (our family was of the opinion that medicine was a last resort.)
I also made it clear that my father rarely took medicines, and that doping him up as some facilities do wasn't part of our plan. He wasn't anxious, so that wasn't an issue.
I couldn't recommend any meds b/c it wasn't in our experience area though, but I would explore what else could be involved before resorting to meds.