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A week ago, the Hospice/Palliative care nurse called me and said she had visited my mom several times. Mom has been under Palliative care for several months. Since Covid, I have only been able to visit Mom 2 times in person for a total of 30 minutes. She has declined significantly. Mom lived in the AL part of her facility until she was moved into the MC unit when she tried to leave, setting off the alarm four times in one day. She has adjusted well to MC. She has no idea where she is, doesn't know me anymore, has become double incontinent, finds comfort in her "baby" doll, and frequently falls, etc.


The nurse said she believes Mom will now qualify for hospice care. She also said that she doesn't believe Mom has "weeks to live." So I should not fear losing her in the immediate future. I understand that hospice intervenes when they believe the patient has six months or so to live. The nurse also said she would talk with the hospice doctor about my mom and get back with me. I told her I appreciate her suggestion, as I do want my mother to receive any care available. Mom was recently taken off of Xarelto because she had a severe nose bleed that sent her to the hospital. The nurse said that with my mom's late stage ALZ, her meds are probably no longer helping her. Mom takes a blood pressure medicine that the facilities PA increased from 5mg to 20mg. Mom had double bypass surgery in 2015 and has vascular dementia in addition to her ALZ. The likelyhood of my mom having a stroke or a massive heart attack are high without her blood pressure medicine. But at this stage, would it be a blessing to lose her sooner rather than to watch her suffer the end of this horrid disease?


One week later, I have not heard back from the nurse. Should I call her and ask for an update?


Many thanks!

AbbyRose, have you any update on your Mom, or decisions you made regarding her care? Hoping things are going OK for you.
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Reply to AlvaDeer
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First: Get An Appointment With her Primary Care Physician. ASK THE PRIMARY DOCTORS TO HELP DETERMINE THIS..

Also, know, that Hospice does not mean "End Of LIfe". They will re-evaluate her within 90 days. If her stats are the same, she will go back to palliative care, most likely.
If she does go on Hospice, Hospice will determine that some meds are not necessary for "end of life patients".. Like blood pressure meds, chlorestoral meds,
blood thinners, etc...
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Reply to MAYDAY
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Your mom can receive adequate medical care in either MC or Hospice.
However, she would NOT be safe at home on hospice care and probably not in a hospice facility, either. That's because ONLY MC Units have an alarm to warn health care workers of her leaving. I'm glad she has adjusted, with apparent satisfaction, to memory care. It's the safest place for her to be.

IF she can receive hospice care on the MC unit, you might want to consider it. Check what requirements hospice has.
I don't know about the "weeks to live" requirement, because I know of quite elderly patients who have been on hospice for several years. Maybe they just surprised everybody by living for so long, But they were not suffering terribly from any of their medical conditions, either.
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Reply to Dosmo13
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"But at this stage, would it be a blessing to lose her sooner rather than to watch her suffer the end of this horrid disease?"

This is THE question. I'd argue yes, it would be a blessing, but ultimately it's something everyone has to decide for themselves. I'd at least get a hospice evaluation so you know more about the system and what your options are.

Stay Strong.
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Reply to ZippyZee
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Because of Covid nobody can have much visitation with their loved ones. If you think your mom has declined to the point where she should be in hospice care and taken off her meds, then you would be right to do that. You state that she is unaware of where she is and doesn't know who you are. Is she in pain? If she's falling frequently then she is not bedbound and the staff needs to be more attentive to her. She can go into hospice care but there is a chance that she can 'graduate' out of hospice care and back into palliative care. This happened with my father. I would say try it and see.
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Reply to BurntCaregiver
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Abby, only you can choose the course of care. In this forum you will always get a variety of advice/recommendations all from caring people with the intent to help. But still, you have to decide. You are still her advocate. Talk to the nurse and find out how hospice care will be different. I know that palliative care does offer some curative treatment whereas hospice doesn't. You mom is far beyond any curative care.

You can throw out the 6 mo rule for hospice qualifying. Your mom has advanced AD and probably VaD but there is no real good way to determine her remaining days.

As already mentioned below, there have been some troubling posts about hospice care and its supposedly overreaching application of high powered meds.
I've read those stories also but I always take them with a grain of salt. We only get one side of the story. We never know how accurate they are. Some may be right on, I don't know. But many of us have had very caring and compassionate experiences with hospice. Some of our loved ones have been on hospice care for 15 mo or more. There was certainly no rush to euthanize them. My wife was never on palliative care so I can only speak from experience and what I've seen. So talk to the nurse regarding the care your mom will get and do your own research about hospice vs. palliative care. You are still your mom's advocate so you decide. Whatever you decide will be the right decision. We're pulling for you.
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Reply to sjplegacy
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Hospice is a transition from Palliative care.
The criteria for Hospice is a Continued decline that can be documented and no cure and the person is not seeking a cure for the condition that made them eligible for Hospice. It does not necessarily mean that they will die within a set period of time. With the continued decline a a person can remain on Hospice until they die. (My Husband was on Hospice for about 4 years.)
If she is eligible for Hospice she will get more services form Hospice but they will replace some of the services she is getting from the facility where she currently is. ( for example: bathing will be done by Hospice staff not facility staff and if she is being bathed 2 times a week she will still get bathed 2 times) They may order her a better bed and mattress, a better wheelchair. But talk to the Hospice and see what they will do and ask all the question you have. This is not a contract you can not get out of. If after a while you feel that it is not right you can withdraw Hospice and go back with Palliative Care.
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Reply to Grandma1954
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Yes, call and get a hospice evaluation for your mom. I’m sure she will qualify. I’ve gone through the deaths of both parents, both with dementia and both on hospice at the end of life. Neither had had any quality of life for months.

With Hospice they got another layer of care, bath aides, nurse visits and better control of meds. Both got meds at the end to help with labored breathing. And both had peaceful deaths.

Do this for your moms sake. If she were in her right mind she would not want to continue in this life in her condition.

Its tough stuff to go through in any event. Best wishes to you.
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Reply to Windyridge
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In recent days it has come up on Forum that there seems to be two different screnarios with hospice. One is that they come in, called in by family and doctor, and provide more care, more support. The other seems to be that they come in and start delivering syringe after syringe of morpine and ativan when the elder is not complaining of pain or agitation.
I find this disturbing. I am seeing it over and over and it is kind of making me wonder if they decide when it is time to gently usher someone "out".
We are seeing posts by family, one just yesterday, who are feeling guilty for having said "yes" and found that their elder is gone in two days, have seen people come in with medications and when they asked, were told it is morphine, and have said "But she has no pain; we were just talking. And she isn't short of breath".
You already have palliative care. There will already be no diagnostic and no treatments. IF you say yes to hospice tell them that you are NOT providing license to kill. I am sorry to put it that way, but I was just thinking about this last time, and wondering what is going on. Make it clear that you are not ordering death on a menu. That you do not want medications that are unneeded to be administers, and esp. morphine and sedation.
I am an old retired RN who loves hospice and their mission. But it is seeming to me now it is more a business. I would advise families to take more care in deciding. Your elder is already getting good care with good decisions. And they may be right about only several weeks left. But I am wondering if inviting hospice in the door is kind of meant to make the inevitable happen sooner?
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Reply to AlvaDeer
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cwillie Oct 26, 2020
I've seem those posts too, and much too often and convincing for them all to be from families in denial about the inevitable. It's very troubling.
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Just a few additional comments after reading posts made while I was typing.    All of the advice others have given is "spot on", especially what meds would or would not be continued.

At the hospice point in time, my father wasn't taking any meds (at 99.5 years old!) so that wasn't an issue with us, but it could be for your mother.  

I hope you can find peace with whatever decision you make, and hope you  and your mother find the best care that's available.
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Reply to GardenArtist
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I think that discontinuing BP meds depends on how high her numbers are, I too would be concerned about the possibility of a non fatal stroke or cardiac event. Palliative care/hospice is much different where I live so although my mom had her list of medications drastically reduced (which was scary enough) it was never a choice of all or nothing.
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Reply to cwillie
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AbbyRose, I think it would be a good idea to do some research and get more information on hospice, not just as preparation now but so that you're prepared eventually if it doesn't appear that hospice is really appropriate at this time.   

I don't want to alarm you, but there are different hospice programs, with different approaches, and some of them aren't always the best.   That's not necessarily a criticism of the particular one with which you're working, but just as a general statement.

When I felt it was time for my father to enter hospice care, I researched, contacted several, and realized how competitive the field can be, and how sleazy some hospice marketers can be.      They asked for information which I later learned was not appropriate at an interview stage, and for which they had no justification.   Eventually I settled on a religious complex with care facilities at various levels.   

They also wanted me to come to their office, or visit one of the facilities at which they operated hospice care.     OTOH, a representative of the religious organization I was considering came to the facility my father was then in, provided necessary information, but also advised that there were certain actions they couldn't take at that point, and certain information they couldn't ask.  

I can't recall right now what those were, but it was clear that this organization had much higher standards than the others I had contacted, who were really only interested in getting another body and more income. 

So if you do consider hospice, contact several, compare, interview and make comparisons before making a decision.

And I personally might consider not going forward with a company that hasn't provided feedback for a week.   The religious organizations responded immediately, including as I wrote, sending a rep to the facility where Dad had gone for rehab.    Quick response made a big difference as well; after I met with this rep, and then discussed with the reps of the facility he was then in, I eliminated all the other contenders.

I hope you're able to get the information you need and make a decision, at your convenience and not that of a marketer.    You want to be at peace with your decision.
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Reply to GardenArtist
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I think before you sign on for Hospice, you want you make sure you know what they will and won't discontinue and what they will treat.

What if a stroke simply leaves her more debilitated? I would not discontinue bp meds if the PA thinks they are still helping.

Will they treat a UTI? Will they culture it to find out what med to use?

I would let the RN get back to you when she has the info she needs. You will have your list of questions ready!
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Reply to BarbBrooklyn
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Not sure if she would be taken off of B/P meds. And additional supplies would not go to her, they should but they won't. Not in a MC setting. But I would make sure she isn't being charged for them or precriptions she receives. These will be provided by Medicare thru the Hospice.
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Reply to JoAnn29
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Look at it this way - what would hospice give you that you aren't getting now, would your mother benefit from extra supplies and oversight or do you feel she is fine the way things are? A hospice nurse is going to see potential clients wherever she looks in the same way that pregnant women suddenly see other pregnant women everywhere, you tend to see what you are looking for.
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1nephew Nov 29, 2020
OTOH, hospice nurses are experts in end of life care, nursing homes are NOT. I asked my mother's hospice nurse to endorse the constipation regimen WE had arrived at after endless months of trial and error...after one too many infuriating exchanges with her usual evening nurse who always resisted my regular requests for a prn laxative to prevent the dreaded consequences of not enough or too much, both approaches they seemed to favor. That nurse told me people's bodies can become dependent on laxatives, to which I replied that my mother was dying, so what if her body is dependent on laxatives???
The staff never was a care partner with my sister and me and the women we hired to be her private aides. The hospice nurses were effective advocates for my mother, and saved us enormous struggles with NH staff.

I agree that you must vet hospice providers, and be explicit about your expectations and requirements. You can even require that they obtain the approval of your mom's health proxy (you) before any med change, and if they won't agree to that beforehand, don't hire them. I fired one company due to the nurse's continued refusal to communicate with us and told them why. We researched the next one before hiring, and I had a substantive conversation with the clinical manager outlining our needs and concerns. That (non-profit) hospice experience was very positive.
Best wishes.

I strongly believe in quality of life. I grieve for the people caught in the terrible constraints imposed under covid regulations, not simply for loved ones but for residents themselves. Late stage AL is a terminal condition. My mom died last year of VaD, and we were heartened when the palliative care nurse said she qualified for hospice and could receive benefits not available otherwise; several hours weekly with a CNA, music and massage therapy, pastoral care as requested, visits from her own volunteer, etc., and weekly med/case review by nursing which was decidedly not provided by the NH. Best wishes.
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