Follow
Share

My 90-yr old cousin has Alzheimer's, she has stopped eating, became very ill with a UTI, and now she’s weak and cannot walk, and needs adult diapers. The hospital cured her UTI and sent her back to the mem care center. She signed dnr papers when she was in her right mind years ago. The very expensive mem care center she's in is now having hospice help with her care, they have prescribed appetite enhancement drugs, and they increased her antidepressants. My question is this: is this congruent with her wish to not be kept alive...?

Find Care & Housing
I have what may not be a very good question, but it affects some of the answers people are giving. You've indicated that the memory care center is having hospice "help with her care" (care of the cousin with Alzheimer's). This is an unusual way of referring to hospice care. Is your cousin actually in hospice care? Or are people from hospice somehow advising the memory care personnel? If she is in hospice, it doesn't sound as if appetite stimulants would be been prescribed. As others have mentioned, the DNR is a request: not to resuscitate and is often made by people NOT in hospice. I am 80 and have had a written DNR for many years, but I'm NOT in hospice, and I know many other seniors not in hospice who have the same DNR request.

If your cousin is indeed in hospice, the appetite stimulant seems contrary to what hospice would usually do, but if she is not in hospice, an appetite stimulant stimulant might be OK. I would add that when I prepared my end-of-life documents, my attorney had me complete a lengthy questionnaire about my preferences in many different near-end-of-life scenarios. However, whether I would want appetite stimulants in these scenarios was not included in the questions. I do not know much at all about appetite stimulants, but if your cousin is still eating and also NOT near death and/or not in hospice, I don't think appetite stimulants short-term would be contrary to her wishes. It's also NOT an extreme life-saving intervention.
Helpful Answer (0)
Reply to Igloocar
Report

DNR means literally do not resuscitate. This would occur if someone has a cardiac event when they need to restart the heart or during cpr. That is all it implies. It does not suggest that your love one was looking to deny herself continued care for other things like UTI's or even depression.

It is common for Depression and appetite to be linked and therefor it's not too far of a stretch to put these to meds together at this point.
Helpful Answer (2)
Reply to nikkimgs
Report

I'm not sure about all states in the US, but in Colorado, if a dementia patient is unable to feed themselves, it is generally considered acceptable to not force-feed them, especially if they have an advance directive specifying this wish; this is often referred to as "comfort feeding" and should be discussed with their healthcare provider to ensure the best course of action based on their specific situation. Key points to remember: Advance Directives: The most important factor is whether the patient has an advance directive outlining their wishes regarding nutrition and hydration in the case of advanced dementia where they can no longer feed themselves; this should be discussed with their doctor and legal counsel.
I'm 52 and have set up mine so if ever end up with this horrible disease and I can't feed myself any longer, I don't want to be hand fed at all. Just keep me comfortable and let me pass. I don't feel its right to force feed and prolong a patients life until they finally forget how to swallow. I think that's cruel. This has to be set up early so, I'm sorry, it wont help your cousin in this case, but many people don't know about this so I thought I would post it.
If you google "do not feed dementia patient if I can't feed myself" and see what you find. I don't believe this is available in all states but there are groups out there lobbying for it. This isn't for everyone, but I thought it could be good for some people like me to see. Take care.
Helpful Answer (0)
Reply to kats2222
Report
Grandma1954 Dec 20, 2024
No one should be "force fed"
It is normal and natural for a person to stop eating and drinking as they near the end of life.
A body will not process food or fluid so the food may cause vomiting that can cause aspiration pneumonia.
IV's should not be given as the fluid can migrate causing swelling and discomfort.
Keeping the mouth moist with swabs soaked in a bit of water helps with dry mouth and lips. Don't give ice chips as that can also cause aspiration pneumonia.
(4)
Report
See 1 more reply
DNR means "Do Not Resuscitate" it does not mean "Do Not Treat". I am a RN and it means that if a person stops breathing or his/her heart stops beating, staff do not do CPR or rescue breathing. Hospice and palliative care works with the patient and the person(s) given permission to make decisions to ensure comfort but not necessarily to cure disease processes. It isn't a hard no to medications that enhance mental health or encourage appetite. Most treatment aims to keep people comfortable and help them achieve the best quality of life... if not quantity of life.
Helpful Answer (4)
Reply to Taarna
Report
KPWCSC Dec 22, 2024
Thank you for saying this! I have had health professionals that don't quite get this! I had two residents hem-haw around trying to ask me if my husband had a DNR. I finally asked if that was what they wanted to know and said they did. They asked if we had talked about if he would want to have a spinal tap? I asked isn't that just a test? They said, well yes. I had to explain that a DNR only means not to revive him if he stops breathing or heart stops beating. I tried to explain he had the same symptoms as sepsis aspiration pneumonia he had about a year earlier. While I appreciate them considering other possibilities as well, I was disappointed they jumped to a conclusion so quickly that he would want no treatment. That was a few years ago and he recovered and is still thriving.

He has Parkinson's and was in a deep sleep as he sometimes does. They felt his neck and said it was stiff... duh he has Parkinson's which causes stiffness. I found out later they thought he might have meningitis. Fortunately within an hour or so later he was wide awake and no spinal tap was needed.

I had a friend say her father was not given O2 even though he was gasping for breath while dying. They told her it was because of his DNR. O2 is comfort, it does not prolong life.

I have been taken back at other instances that have happened with my father, my husband and friends regarding health professionals not understanding the simple purpose of a DNR. I am always there to advocate for my husband to be sure it won't be used before the proper timing. I told my doctor that I would like a DNR but I don't have any one person I feel would understand they need to step up to advocate for me in similar situations so I am concerned I will be denied proper care. She said she would make a note in the chart. I only hope someone will see when it becomes an issue for me... yes I know it is best to actually have one. However, I have talked to my family about it.
(1)
Report
If this were me, I would not want to be given appetite enhancers. Since the antidepressants likely are contributing to the cousin's COMFORT, I would choose to continue them. I see no good reason to do anything designed to prolong her existence at this point, especially since she apparently did not wish this.
Helpful Answer (2)
Reply to ElizabethAR37
Report

Hospice care (terminal diagnosis with <6 months to live) will include comfort care. My LO has dementia Alzheimer's with a DNR, DNI, POLST, + Advanced directive. They stopped all life-sustaining medication and provide only comfort care meds - anything that keeps her calm and pain free. She barely eats, so it's kinder to keep her pain-free during this final stage.

If your LO does not want to be kept alive and is on hospice, you should have a case manager or an LVN helping the family. If she wanted MAID, she cannot have it with a cognitive diagnosis even in a state where it's legal. However, you can make sure she is pain-free and advocate for additional morphine to support her comfort. The hospice should have a social worker assigned to your case and can help you understand the next steps.

If your LO is not on hospice, talk to her doctor for a hospice referral. Or, ask the staff in the MC which hospice(s) that come to their patients are the best. There is a difference. As how many visits she'll get and from whom, what supplies they provide, etc. Hospice doctors and nurses understand the balance of over-caring (keeping someone alive) and allowing them to die comfortably.
Helpful Answer (1)
Reply to PMG925
Report

Woolnutzi: Your cousin's POA needs to speak to the cousin's physician.
Helpful Answer (1)
Reply to Llamalover47
Report

DNR is do not resuscitate, not hasten their death. I work at law firm, and just two years ago a facility did settle for an undisclosed amount cause staff did not help a patient that was choking since they had a DNR. I just do intakes not a lawyer or anything but yeah. Take what I say with a grain of salt.

Edit since hospice is in play things are probably different but idk.
Helpful Answer (0)
Reply to Fatherdrama94
Report

Hospice in 2024 is different from 2000. It is designed to care for a person with a terminal diagnosis. A DNR is supposed to be “do not resuscitate “. That is different from withholding care. There is a time when the body shuts down but our job is to sustain life, not hasten its end.
Helpful Answer (2)
Reply to Maurice53
Report

This is a timely post as I am going through the same thing with my 95 year old mother. She returned from the hospital to her long term care facility this week. Over the past several months she has not been eating much. When she was in the hospital I asked the attending physician if an appetite stimulant might help. The physician prescribed Megace twice daily. The long term care facility is supposed to be giving her Megace. I have also been wondering if this is something my mother would want in terms of artificially extending her life. She is on other meds of course but something about the appetite stimulant seems to be a bit of a reach on what she would want. At this point I don't know yet if it's working. Also, my mother had a bad UTI which was near sepsis. She is cured of that but her dementia has gotten worse. The dementia might improve but not 100% sure.
Helpful Answer (0)
Reply to parentson457
Report

No, it is not. Also, if she is under hospice care, why are they giving her these life prolonging treatments? Whoever is POA needs to get on this!
Helpful Answer (0)
Reply to jemfleming
Report

You can switch the hospice if you so wish. You are not committed to the one you have. When I was a hospice volunteer, the nurses told me it is actually painful to the body to force food when it wants to shut down.
Helpful Answer (2)
Reply to blondinthesky
Report
hmyers Dec 19, 2024
I had not heard that, thanks for the input.
(1)
Report
This situation is contrary to Hospice Care. My mom's personal care home is not on the same page with Hospice Care. If you are your cousin's POA or Guardian, you can tell them to stop providing these enhanced drugs.
Hospice Care is suppose to keep her comfortable. I am sure your cousin's memory care is also charging for enhanced care even though she's in Hospice Care too. It's a racket. It's exhausting to advocate, but you must. Sorry for your situation. I am battling for my mom's care everyday. Staff and Administration is not on the same page.
Helpful Answer (3)
Reply to Onlychild2024
Report

They're giving her appetite drugs and anti-depressants because sadly Alzheimer's disease is not considered a terminal illness. It is but hospice doesn't treat it like one. Especially if the memory care she's in is a high-end expensive place and she's paying for it herself or has a great LTC insurance policy. Hospice and the memory care will do everything they can to prolong her poor, miserable life until the money starts dwindling. Then making sure your cousin is eating and drinking won't be such a high priority.

Such as it is, they're following the rules of hospice care. There's not anything you can do about it. Visit your cousin and see for yourself how she's doing.
Helpful Answer (6)
Reply to BurntCaregiver
Report
AlvaDeer Dec 11, 2024
This elder is on Hospice care. She should not be given, imho, appetite enhancing drugs.
I highly disagree that a memory care that is high end would keep someone alive for profit. At least in my area they have long waiting lists. It is not my experience of at least the ones I am familiar with and my best friend is a DON at one in San Francisco.
(7)
Report
See 1 more reply
If Hospice has ordered the medications then it is permitted on Hospice.
If she is eating then the medication is working
If she was at EOL (end of life) the medications would NOT work as stopping eating and drinking is part of the natural way the body shuts down.
IV's and feeding tubes would NOT be permitted on Hospice. (a feeding tube is ok on Hospice if the person had one prior to getting on Hospice.)
A DNR is a document that states that no resuscitation is to be done. And if it is a newer form that states no feeding tube or intubation they are still following that directive.
Helpful Answer (5)
Reply to Grandma1954
Report
swmckeown76 Dec 19, 2024
It must depend on the hospice, My late husband was a private-pay long-term care resident when I reluctantly signed him up for hospice care. I made it clear that when he could no longer eat much, they must give him IV fluids. I couldn't imagine having him dehydrate to death. The hospice complied.
(0)
Report
Yes. This is congruent with your cousins wishes. It sounds like she is receiving excellent care. Going on hospice will enable her to remain in her current home w/o having to be sent back to the hospital.

Neither of these will keep an actively dying person alive.

Beneath your post is a link to DNR. Click on this and read the articles for a better understanding. Also click on Hospice if you would like more details.
Helpful Answer (3)
Reply to 97yroldmom
Report

Hey Woolnutzy, Your cousin is blessed to have your love and concern. My first thought was that the high end facility\ facility doctor had a hand in keeping her going for the money. That is an awful thought. I hope you can see if she has her own doctor that’s not connected with the home she is in. Otherwise I can say that when my husband’s grMother at 92 was on hospice and received appetite enhancing meds( her body didn’t seem to be failing in other areas) it seemed to work a bit but not for long as her body’s natural process over rode the meds and she stopped eating again.
Hoping your loved one has a decent end of life.
Helpful Answer (3)
Reply to Bellerose63
Report

The memory care facility cannot "have hospice help" on their own. Your cousin's guardian or POA is the one who had to meet with hospice and sign papers allowing her to enter their care. Cousin can live in memory care, and hospice workers visit her there, which is her residence.

I'm not sure what you're trying to accomplish with questioning the care she's getting. She's at end-of-life, and she planned for it. Let those who are helping her keep doing what they're doing - it's not up to you to change things at this point. It seems like she's getting thoughtful, expert care. I am very sorry for your coming loss.
Helpful Answer (5)
Reply to Fawnby
Report

The memory care is not doing any of this. Its your cousins doctor who's ordered medications and a hospice evaluation. Whomever is her POA will need to speak to your cousins doctor to discuss these matters.

A DNR simply means Do Not Resuscitate if her heart stops by using CPR. Increasing antidepressants is intended to keep her from feeling miserable!
Helpful Answer (10)
Reply to lealonnie1
Report

Who is the POA here?
That's what is important at this time.
If you are the POA discuss with the MD the withdrawal, now she is on hospice (who will help with the withdrawal of unneeded medications) all medication to promote long life should be removed. The goal now is to understand that the loved one is actively dying and that comfort is an issue. If the anti depressants are on board for some time now then an abrupt withdrawal of them is NOT A GOOD THING. They can stay and they provide comfort.

Again, this is for the POA or next of kin to handle, to make it clear that the goal now is comfort EVEN if this comfort care and medication does cause death early by some moments, hours, days or even weeks. The POA needs to discuss medications with the Hospice personnel in charge and the MD in charge.
I am so sorry for the coming loss.
Helpful Answer (5)
Reply to AlvaDeer
Report

Ask a Question
Subscribe to
Our Newsletter