Can anyone help with questions on end-of-life hospice?

Ask the hospice workers what the death process has looked like for various patients in this situation. There is a spectrum as people are different and die differently but I would think they could give you some examples or give you the name of a book to read.

Each individual death is different. You have a number from the hospice provider who has some sense of her disease. Use the number

The hospice social worker or RN should be able to advise and counsel you. You can also buy really helpful hospice booklets from BKbooks.com. This is the website for Barbara Karnes, RN, an extremely gifted Hospice expert who has worked for decades in the field of hospice care, trained other professionals, and has written many booklets for family members with a loved one who is in hospice, or who is dying or has died. You will find great comfort and knowledge in these booklets as you go though this last stage of life with your mom and finally her dying. Death is the last act of every person’s life.

My sweet mother passed away on November 22, 2024, at home, due to advanced dementia, heart disease and afib. My sister and I were her 24/7 care givers and it’s the most horrific nightmare I could ever imagine! Watching your loved one deteriorate is so painful I can’t even find the words to adequately describe it. My Mom had been in palliative care for about four months and then hospice care for the last six weeks. My sister and I knew nothing about how hospice care worked.
We soon discovered just how things were going to go with the Amedisys team we worked with. Now this is based on my own personal experience, so others might’ve had different opinions and perspectives.
1. You will meet with a hospice nurse and then they will be assigned to you and will come to the house everyday to check on your Mom, take her vitals, talk with you and listen to your concerns. If for some reason you don’t like who they send out, contact them and request another nurse! This is the most difficult time of your life so you need all the kindness you can get! There will be a doctor that will write the scripts, but we never actually saw him, or spoke with him, just the nurse. When entering hospice, you are no longer under the care of her previous doctors and taking your Mom to the hospital or calling 911 is no longer an option. If anything were to happen to your Mom, you call the hospice nurse, not 911. If you call an ambulance and she’s taken to the ER, hospice will be unable to intervene. My sister and I had a very hard time accepting this fact. It took us about a week before we signed the paperwork and agreed to let Mom enter hospice.
2. You will have the cell phone number of your hospice nurse, to call 24/7, which they encourage. We had two times where we called at 3am and another time at 4am and the nurse came right out to the house.
3. They will explain the dying process to your family, what signs to look for, what to expect and answer any questions you have.
4. Since her regular medications will be stopped, ask for other meds to help with any pain and/or anxiety. They will give them to her usually without question.
5. Hospice care will provide to you, at no cost, most items you will need to make your life and your Mothers life, easier and more comfortable. If she is bed bound, ask for a large plastic tarp with handles (I’m blank on the name) to place under her in bed so that it makes it easier to move her around, or turn her on her side, when needed. Also ask for padding to place underneath her bottom for any bladder leakage, bedside bath items, depend adult diapers (if she doesn’t have a catheter yet, but a catheter is SO MUCH EASIER to deal with and the hospice nurse will inset it and change it on daily visits) and any other items you may feel you need.
6. There is the option, included with hospice care, to have a Chaplin come to your home, anytime you feel the need for spiritual guidance. We took advantage of this and are so glad we did! He was a wonderful man who had a father with dementia who had just passed away. He understood what we were going through and it was a huge comfort to have someone praying over my Mom and our family.
7. When she gets to the point she is unconscious and the body begins to shut down, it’s terrifying to watch. The death rattle is a real thing and I can still hear it in my sleep. What you need to know is that they are not in pain when this is happening. We requested a suction device to help keep the secretions from becoming a mess. I’m the one that did it and I have no clue how I was able to, but you do what you have to do. I also crushed up her Xanax and mixed it with the morphine, (the nurse gave instruction on this) then injected the syringe into her mouth, every hour, till she passed. She’d started having afib attacks the two days before she died, so we were always concerned she was in pain,
My sincere condolences and prayers for you and your family. Just continue to be her advocate.

My wife is bedridden, in home hospice since Sept 24. She has severe arthritis in neck, hips, and feet, she can't walk, with extreme anxiety, her palliative nurse recommended home hospice, it's a blessing, this is the second time under Hospice, the first during the Hunan Virus which she almost died, she was under care from January to Sept & recovered. Her nurse comes once a week & C N A twice , the rest of the week I'm on my own. I'm 75, wife is 79 This company & their crew will bend over backwards to make the patient comfortable, that is their prime objective . I give all the meds, & had to increase the pain medication a lot, which I was hesitant to do, but comfort is key. Her nurse cut & dyed her hair, but trying to get dentist or eye doctor is close to impossible. She is close to checking out, caregiving is tough work, but it's my job what I signed up for, but with out these extremely gifted , talented & generous nurses, I don' know what I would do, GOD bless them all, but home hospice is the only way to go, RP

If your loved one is in a hospital or facility, ask to speak to the representative managing her hospice treatment. This caring person can answer all your questions. He/she can also give you ideas on how to help your loved one during this phase of your loved one's life.

When I knew we were losing Dad, I called Hospice. I explained what was going on and they guided me through the entire ordeal. They all were so empathic and answered any questions I had. As the caregiver, Hospice allowed me to just be Daddy’s daughter. They explained what was happening, what to expect, and what I needed to do. They really step in and provide comfort to the entire family. This was my first close lost and I had no idea what to do. These people are amazing. I also recommend their grief counseling. It may not be for everyone. But I’ve learned a lot about myself. They offer diff classes to help… art, book club, meditation, group. They will hold your hand and walk with you. God bless.

My 96 year old mom with pretty severe dementia, was suffering with UTI's and they made her so confused and disoriented that she fell gettig up in the middle of the night at her Assisted Living. She broke her hip, crushed the bones around her eye socket and had a brain bleed. She was in awful pain that the hospital couldn't control and kept trying to get up (which she obviously couldn't do). Due to her age and the fact that she would never walk again without surgery (doctor said it would be a very long road for her and she would be so confused), we elected to put her in hospice so they could give keep her somewhat comfortable. She passed 2 days later, and went as peacefully as I've ever seen with my brother and I holding her hands. I know my dad was anxiously awaiting her to join him!

The hospice nurses are angels and were so sweet and gentle with her. It was actually an amazing experience (as good as death can be). I put her in a hospice unit attached to the hospital though as I couldn't take her back to the Assisted Living facility for them to come there. It was a lovely place and they told me step by step what was happening.

I put my Mom on hospice after I thought that we could not longer control the pain she had with arthritis and therefore dementia was taking over (early indications of not being able to swallow). Just prior to this, I figured out that she was no longer taking her pain medication. In the past, managing the pain was the key to reducing the dementia symptoms.

I think the reason why she no longer took the pain pills was because she thought it was bones in the food that she ate (e.g. fish bones).

Anyway, about the same time that I made the decision for her to go on hospice, she ended up with what we thought might be a UTI. However, we could not get a urine sample because she wouldn't allow us to gather one...so the UTI got worse, complete with fever.

Once she was on hospice, we no longer needed to get a sample and get it analyzed for the uti. She had a fever, and she wouldn't take any pills for it (this is a lady who had no issue swallowing large vitamins up to this point). So hospice was able to get her medication within a day and into her via suppository. Her fever was gone in half of a day.

However, with the lack of pain medication, she was in intense pain. We gave her low doses of morphine to ease the pain, however, she zoned out and was no longer able to sit up or go to the bathroom. We didn't try oxycontin as it did not cut the pain at anytime in the last 5 years. In addition, it was a tiny dose of oxy that she was spitting out. So we included it in applesauce, until she refused the applesauce (she never liked applesauce.)

Under morphine, she started hallucinations, she started mumbling a lot. Then she started crying out. She was too weak to get out of bed, so she would yell for people to help her, however, she couldn't even sit up, even with help.

She slept and in the beginning, I could wake her up by just touching her. However, in about a week, she wouldn't wake. She was thirsty, but her tongue wouldn't cooperate to let her drink, even with a straw. I attempted to give her cookie crumbs, however, her tongue pushed out all the food.

2 weeks from the beginning of hospice, she passed. Thankfully...

This was one of the hardest times for me as she was crying and hallucinating, etc. and there was nothing I could do as she thought I was a stranger to her and her mouth refused any nutrition. Her POLST had been altered about 6 months earlier to say no artificial nutrition. It was very hard watching a person suffer. At least it was relatively quick.

I thought about this a lot in the past year and in hindsight, I wish I took my mother out of the nursing home and brought her home for the last few days of her life. I would have used the hospice my mother had when she was living home. I really thought they were quite good. I did not like the hospice the nursing home used. And this was a nationwide renowned hospice in NYC, which I think might have been one of the first ones. The aide that this hospice provided for 4 hours each day was useless and I think her pain could have been controlled better than it was. I had to track down the nurse to give her the pain meds on several occasions.

My mother suddenly declined and there was not enough time to get the ducks in a row to enable her to die at home.

I guess the advice I can offer is if you do not like the hospice you are using, find another.

You do *not* have have to cancel upcoming medical appointments if you don't want to. My late husband had a follow-up appointment after a hospitalization. He entered hospice care shortly after the hospital stay. I asked his hospice chaplain what to do (he was also a part-time priest for our parish.). He told me people take people "off" hospice for a day just for reasons like this and then put them back on the next day. I wanted the appointment to see if there was any reason to change his medications or if he might have the surgery that might be possible. His long-term care center transported him to the appointment in their wheelchair-equipped van. I met them there. The doctor recommended against the surgery, and I reluctantly agreed. Then the next day my husband went on hospice care again and stayed there until his death a few weeks later. I was able to be there when the chaplain gave him Last Rites, and the chaplain was the assisting priest at my husband's Requiem Eucharist.

My husband is in memory care and has been on hospice for a few months. His friends that he socializes with there are also all on hospice. Some people there are not - yet.

The hospice is owned and operated by the same family that owns the memory care facility. Their offices are next door in another memory care facility that they also own. Sixteen residents live in each memory care building. It has worked out well for us. I had a choice of many hospice providers for husband, and I'm glad I stayed within the "family" of companies.

The hospice workers - nurses, doctor, aides, caregivers, social workers, pastors and everyone onsite including the directors and handymen - all know each other and work well together. This has been of great benefit. The hospice also does in-home care and services other care homes as well.

Husband's hospice nurse officially sees him once a week, but in actuality it is four or five times a week because she is assigned to other residents there also. She and the other nurses make a point of setting eyes on, speaking with, and checking any of their patients even if they are not scheduled to be seen that day. Hospice bathes the patients, so that's more eyes on them looking for and reporting breaks in the skin or anything else concerning. I can and do text H's hospice nurse any time I need info or to report something. The reply is immediate.

Husband (and his friends) will all remain in their memory care rooms as they decline unless there's a reason they need to leave there. Staff will be in and out to pay attention to them, give meds, and so on. I will, as now, be there almost every day. It becomes a very close relationship with people H and I have come to know and appreciate.

My parents were both in hospice care at home as was their wish. Fridge full of meds, people traipsing in and out of their home all hours. I like the model of my H's hospice care much better.

Ellen61: Prayers forthcoming.

I had 2 excellent experiences with hospice care for both my parents. They came into the Assisted Living facility my parents were living in and administered care and bathing to them there. Neither of my parents suffered any pain at all, and if there was something I didn't like about the hospice group, I would've fired them.

Just know you are not obligated to watch your mother suffer if hospice is unable to keep her comfortable, nor are you forced to endure sub par services you're unhappy with. Folks sometimes like to come here and share their horror stories about hospice, yet they did nothing to circumvent that care! When the hospice nurse I hired for dad was not doing the job I felt she should be doing after a few days, I called the supervisor and had her replaced immediately. THEY work for US, just remember that.

Hospice can be an emotional time for us because we're preparing to lose our loved one. My parents were both very old and very riddled with disease, however, so I was grateful to God that they would be done with their suffering soon and enjoying the next wonderful phase of their eternal life instead.

Best of luck to you.

As others mentioned, each is unique, but here's my experience:

My 92 yr old parents w/ dementia have been on hospice for 5 weeks. It's been a great relief for me, for my siblings, plus their caregivers.

First I got a call from hospice intake and provided as much information about my parents as I could--health concerns, issues, etc.

They asked for all drs names and numbers to obtain info, and I gave permission.

I signed forms via email. I provided advance directives and funeral home.

A few days later, with a caregiver's help, I met the hospice RN (who is also my parents' case manager) via FaceTime ( I live 800 miles away). We spoke at length before she met my parents.

Then I cancelled all my parents' upcoming drs appointments on MyChart. Though I do find Epic extremely useful, it was nice to leave all of what MyChart offers in someone else's hands--the hospice RN.

The RN visits my parents twice a week. At first she would call me with an after visit summary. But now she meets directly with the caregivers. If anything has changed, the caregiver will inform me. And the caregivers know that they can contact her via text or call any time.

Meds and supplies are delivered directly to my parents' home. No more ordering online or dealing with a pharmacy app.

The RN eliminated meds she felt my parents no longer needed--she streamlined everything. Despite my research online about meds, I was at the mercy of the PCP and neurologist, who, I felt, were just throwing meds at the situation and not looking at the whole picture.

Re any questions when there's a shift in their health--should my parents go to the hospital? Do they have a UTI? Can a urine sample be dropped off or do they have to go in? Can I get a refill on their meds? Now the RN comes to my parents.

And the drs who don't use MyChart were a whole other disaster. Trying to communicate with them was erratic at best. The RN takes care of everything regarding my parents' now.

And why weren't their drs recommending hospice? That was my big question. It took a trip to the hospital after my mom fell (one of many) for a hospice dr to recommend hospice. Shouldn't my parents' own doctors have recommended it? That told me they just weren't aware of the scope of the situation.

No more doctor's office visits--no more arranging/rescheduling/waiting months for an appointment, getting my parents to the drs office, waiting in the waiting room--hospice home visits replace all this.

I also met a hospice social worker on FaceTime. She calls me after visits and asks how I'm doing. My mom did not show interest in meeting her, but my dad did. (My dad is sociable and my mom more private.) She visits every other week or when necessary.

Someone from clergy was available to me or my parents if needed, but we chose not to take it.

During the second week, the RN dropped off a "transition kit." That was a bit of a surprise to me. Perhaps I wasn't ready for it. It contains morphine and other necessary meds that will take the place of life prolonging meds with meds that help with pain, etc. It is comforting knowing the meds are already in their home (in a case in an extra fridge in the garage), and they won't have to wait for the pharmacy to fill the scrip etc.

Just last week the RN took out a med from the transition kit for excess secretions for my dad who is having trouble swallowing and often coughs at night. No more worry about should we or shouldn't we take my parents in when we have a concern.

Overall--what a relief.

My husband was in transitional from Supportive at home-returned to
hospital from THE PAIN from vertebrae fractures (steroid-related😞) and then Hospice prep or diagnosis at hospital where he died a few days later.

I knew the end of life stages/signs from reading and research BUT THE PAMPHLET FROM HOSPICE was so much better but they gave me so many papers I did not read it and I wish I had...so please read that info if they provided. I would have known that his end was nearer but I am slowly healing and my heart goes to you.

Hospice Care is going to provide your mom with compassionate care and they will keep her comfortable all the way to her last breaths. They are wonderful. They will keep you informed of everything. Very sorry about your mom.

Five timer here. Each is different on keeping patients comfortable. I found that counselling is available to the caregiver. You should keep on top of questions because you are given a 24 hour numbers. Conditions can change quickly

In regard to Hospice, I wish I would have made a different choice for my precious mom. She died in a hospital so called "Hospice" in Michigan (which shall remain nameless) but it is a very well-known hospital in Royal Oak. She was in excruciating pain and I stayed with her watching her for 13 days and nights. It was the worst experience ever! The hospital Hospice could NOT control her pain even though we were promised they would upon signing the paperwork to have her admitted to the hospital Hospice Ward.

My family and I felt it was best to keep her in the hospital as we could not care for her at home and felt the hospital had sufficient means to help her with the incredible pain she was in. We were so wrong!

PLEASE, PLEASE check out the facility as best you can so as to provide the best care for your loved one before signing on the dotted line. If I could turn back time, I would definitely bring my mom home and have hospice at home help her. I regret this decision every day and she died on Christmas day, 2020. The memories still haunt me years later.

Peace be with you and your loved ones.

Your hospice personnel — nurse, social worker, clergy — can give more specifics. They do this as their career and usually as their calling.

Hospice Nurse Julie is also on YouTube.

I was extremely grateful for home hospice during my dad’s last 4 months and then residential care hospice his last 3 days.

Hospice is about quality and making the most of each day — eliminating pain and discomfort as much as possible. And no longer about prolonging life or aggressively treating what are generally incurable conditions.

Your focus now should just be on being with your mom as much as feels right without exhausting yourself. Holding her hand. Telling her how much she means to you. Telling her favorite memories. Maybe reading to her or singing to her. Don’t make her do anything she doesn’t want to do (eat, drink, etc) as long as she isn’t endangering herself, let her be. Keep her as comfortable as possible. Tell her she can rest and you will take care of whatever might be worrying her (home, possessions, pets, phone bill— anything she is fretting about). If she asks for something doable — a milkshake, flowers, a call to someone she hasn’t spoken to in a long time, to hold her cat, to watch a movie with you, whatever — try to make those things happen. But don’t beat yourself up or guilt yourself if you can’t do them.

best wishes to you.

I’m sorry you’re in this position with your precious mother. My dad, with CHF, but no dementia, chose home hospice for himself after the last of many hospitalizations to pull off fluid and a failed rehab. He’d truly had enough of this world. Hospice was wonderful for providing an abundance of supplies, loads of expert advice, a great aide twice a week for shower and other help, along with the good meds for keeping dad comfortable. What it doesn’t provide is hands on care around the clock. At first this wasn’t an issue, my dad had lots of family and friends eager to take turns helping out. When dad grew sicker, staying in bed, it got way more intense. The hospice agency gave me contact information on workers who they were familiar with, ladies who were CNA’s looking for extra work. I hired several and they were amazing. My dad stopped getting up and eating five days before the end, stopped talking two days before, and died peacefully about seven weeks into hospice. It was both traumatic and a great privilege to be with my sweet dad through it. I wish you and mom both peace in the days ahead

Ellen, I am sorry you and mom are at this point.
Hospice will help both of you.
But I will tell you that no matter what anyone responding to your question says what you are about to face is your unique journey.
There are "typical" stages one goes through when dying.
Mom will stop eating and drinking. This is not painful for her. She does or will not feel hunger or thirst like you or I do.
Her breathing will / may change. Might actually sound scary. This is caused by a buildup of secretions.
Her skin may begin to change this is called Mottling.
Your Hospice Nurse can explain all this.
You can also check out Hospice Nurse Julie on Face Book she has a LOT of good information.
What you can do now...spend time with mom. Hold her hand. Talk to her. Tell her you will be alright. Thank her for being a good mom. Sounds like she raised a good, loving daughter.

Hospice itself is the place to get these answers.
It's what they DO.
They are there to provide you with nursing, with aids to help with some bedbaths or shower help several times a week, with equipment that will ease breathing by allowing you to raise and lower the head of the bed and elevate the feet to help with breathing and fluid accumulations from CHF. They will provide bedside commodes, and other equipment as required.
Hospice also has Clergy on call for you to discuss spiritual struggles for Mom and the family as well. You will have access to social workers.
Together with Hospice MD you will work out what medications Mom will remain on for her comfort; diuretics would be included to keep fluid off the lungs.

Do not be one bit surprised if Mom doesn't actually improve under Hospice care.
You already recognize that this is end of life care, but often CHF itself is well managed.

Please take your questions to Nursing, aids, clergy and social workers, dependent on area you are concerned with. Wishing you the best of luck and a really good Hospice service to make this time for your Mom as comfortable as it can be made. And take good care of yourself, because those who stand witness to the end of life know how hard it is to do so.