LO going on hospice in assisted living memory care unit, any advice or what can we expect?

Too bad the answers here are mostly hospice bashing, as usual. So many people have no idea WHAT they're signing up for with hospice, it blows my mind.

When I signed my mom up for hospice while she was living in Memory Care Assisted Living, I realized she was at the end of her life. Thankfully, because she was 95 and had advanced dementia and CHF, was wheelchair bound and hollering for her deceased parents and siblings constantly. It was awful. What I expected from hospice was meds to calm her down and prevent the horrible agitation she was suffering, because her PCP would only give her a Certain Amount of Ativan. I also expected the Good Drugs for pain, because my poor mother spent YEARS suffering in misery with neuropathy in her legs and feet, day in and day out, and I listened to her CRY about it all the time.

I expected a hospital bed, supplies and meds all at no charge, and got them. I expected a visit at least once a week from an RN who would stay in touch with me about what was going on, and I got that. I expected CNAs to bathe mom 2x a week and I got that. They even massaged lotion I to her skin afterward. I expected the chaplain to visit, and he did, same with the social worker. I expected a binder of information on the hospice company with phone numbers to call (in addition to the RNs number I had on my cell phone) and a full disclosure on how they operated.

I wanted to keep mom OUT of the hospital, she was dying, and the 4 hour minimum rule in the ER was providing NO help for her at ALL. Which is why I signed up with hospice. Had I wanted the torture to continue with the hospital, I'd NOT have brought in hospice.

The RN called to ask me which meds she should discontinue? Since the idea of hospice is to let nature take its course, I told her to dx all but the antidepressants and the diuretics to keep the edema in her feet/legs regulated.

When I got a call that moms status had changed, 2 months and 2 days into hospice care, and she was comatose in bed, the first thing the RN did was to bring her a pair of waffle boots to prevent her heels from getting bed sores. Mom was turned a quarter turn every 2 hrs by staff at the Memory Care.

She passed peacefully exactly 1 week later. Mom was given a minimum dose of morphine only when she seemed agitated during that week, or grimaced, and my dh and I sat with her for at least 8 hours a day.

I had a similar experience with a different hospice company for my father in Assisted Living in 2015. But I didn't like the RNs attitude so I called admin and asked for someone new. They said sure and #2 was wonderful.

What you should expect from hospice is that they'll keep your loved one comfortable and clean during their end of life journey. Not that they'll kill your loved one before her time, or do sinister things, or send you bills for services rendered. Your loved one will likely pass under hospice care, which you should also expect. Also expect to be sad and grieve, but try not to blame hospice for her death. DO, however, speak your mind, ask questions, and by all means ask for a new RN or FIRE the hospice company if they are incompetent.

My condolences on what you're going thru. Best of luck with a difficult situation.

I had bad experience with hospice for my mom. First they said she would live for 3 to 6 months. Next they took her off all her meds, when I was only told they would now manage her meds. Then they brought in a med bed & wheelchair which I did not authorize. I was told ins would cover all. Well this is what happened. That night she called me at 3 am saying she was in very much pain. I went to assisted living & found they had not given her any meds at all. I called them & they sent someone over with pain med. After complaining about the poor care, the person sat with her that night. I stayed with her the next day & she died that night. The ins refused to pay for the wheelchair & the wheelchair co. kept billing me & threatening to turn me over for collection. I learned that you do not have to turn the persons med over to hospice. They can keep their own Dr, & medications if you want. So if you are local I would strongly advise that. The Dr. can still sent someone over to check on the person & you can still be in charge of their meds. I have lately been told that medicare covers palative care under hospice which seem to very good.

My experience taught me to expect very little unless your LO truly is in their final days and possibly needs pain/anxiety management. I was coaxed into calling hospice by my Primary Care physician’s well meaning nurse after dealing with a brief dehydration episode. I thought it over and decided that maybe she was right - it was time and that in any case it would be good to have an extra set of eyes and a resource if I needed to call. But I also had a feeling it was too soon. Sure enough, she got kicked out after the first couple months. I was ok with that - especially since they really weren’t that helpful. The nurse came once a week and took vitals and offered low grade supplies including chux that tore apart too easy to be useful for a bedridden patient. I accepted the gloves and that’s about it. Everything else was very substandard and I already had found strategies to keep the cost down of the supplies I like. I can and do take vitals - don’t really need help with that. The social worker, clergy person, and volunteers (for respite) were impossible to contact and really not responsive. I stopped trying to call. The worst part was that while they left her on her BP medication they would not continue her Eliquis prescription. She is on that because she had a pulmonary embolism 6 months after she moved in with me. It was just after her second COVID vaccine and no other evidence of clots were found so I am a little suspicious that there was a cause and effect there. But, regardless, the hospitalist put her on a maintenance low dose to prevent a recurrence. Hospice insisted that she had to go off it. I felt that was both stupid and risky since she does spend a lot of time in bed. Going off could create a situation where she would be at a higher risk for a stroke which would make things even worse for her and me. They just didn’t want to pay for it. I had enough of a supply to continue to give it to her and since they dropped her anyway she continued to receive her prescription. My take - not much help. I agree that they are helpful at the end, but are just a money making machine if called in prematurely. Not sure I would use them again unless dealing with severe pain or anxiety. I prefer to call a Urgent Care service I found that comes to your house. That has worked better for me.

I’ve worked hospice for decades. They won’t tell you all they provide as Medicare pays them a certain dollar amount and the fewer supplies and fewer visits from bath aide nurse social worker more money in their pocket. I would stay away from the biggest hospice called hospice of the valley. The staff are good it’s the higher ups that make them do things that are not ok. You can look them up online as they got in trouble on Medicare audit. The higher ups told to sign on anyone they can to get the money from ins. Well they got caught paid back big money had to close a few of their inpatient unit and guess who they laid off?? The Cnas who do so much. It was a very sad time loosing cna’s they did nothing wrong. It was the higher ups & nurses tho all them still had their job. I will never give Hospice of the Valley any referral.
Also they tell u that once u sign on in case ur loved one needs to go to hospital to call them first. The family needs to know that of course you can send ur loved one to hospital tho you will need to sign off hospice and when ur loved one is better u can sign back on with them or any hospice. They don’t tell u this because it’s a lot of paperwork for them. Also only medication they will pay for is diagnosis they were signed on service for. So if they got on hospice for heart and their is lung meds to be given they only pay for their heart meds. Hope this helps you a bit. Remember u can always switch hospice companies. There are so many now. It’s a money making business.

Hospice care has the goal of making your loved one comfortable and happy for the last phase of life. Hospice does not attempt to "fix" or force anything. When you visit, try to keep your spirits positive and loving. A big hug to you and your loved one.

RK1234: Pose your question to the hospice nurse.

Hospice is for patients that are in the final stages of dying and to make that last journey comfortable as possible. Premature entry into hospice, means life saving procedures are no longer available (my experience with my wife which led me to take her off hospice and she is still alive after two years).

Mom and Dad were in hospice for the predicted last six months of their respective bout with cancer -- appropriate and useful (we used Angela Hospice in each case).

This question is best addressed by Hospice itself. They have social workers who can consult with you about what to expect. I wish you the best of luck going forward, but the medical team caring for your loved ones are the ones who have the best informations about an individual who is as unique as her/her own thumbprint.

RK1234, both my parents had hospice and I was glad they were there. As funkygrandma59 had written earlier on this thread, hospice was an extra set of eyes. Plus if I had any questions I could easily call the hospice main office.


My Mom was in a skilled nursing home, and hospice was able to let me know when the final days were approaching so I could plan accordingly. I was able to stay the night on Mom's final journey.


My Dad was in Memory Care and was assigned hospice. Dad passed within a day or two after returning to Memory Care from the hospital.

I suggest getting a copy of the book "Surviving Hospice: A Chaplain's Journey Into the Business of Dying How to Find a Trustworthy Provider" by Maryclaire Torinus. If you order through Amazon, you can get a e-copy and read it with the Kindle app immediately. She has a list of questions to ask any hospice provider and tips to finding a good one. If a particular hospice is not meeting your expectations, you can fire them and find another. That is your right as guaranteed by the Medicare hospice benefit (which I'm assuming your LO has).

You can expect the hospice nurse to come visit and check your LO's vitals once a week to start, and aides to come at least twice a week to bathe them.
You will have access to the hospice chaplain, social worker and volunteers.
They will supply any and all needed equipment, supplies and medications all covered 100% under your LO's Medicare.
They will be extra sets of eyes on your loved one and will report anything unusual that they notice going on with your LO.
I do hope and pray that you have s good hospice agency on board as they are not all created equal.