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My mother has been placed on end-of-life hospice. She has severe dementia, CHF, and A-Fib. She is 83 and has truly lived a wonderful life.


Can anyone walk me through this process and give me some insight into what I’m about to face? The advice would be greatly appreciated as I’m at a loss as to what comes next.

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.
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Reply to AlvaDeer
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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.
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Reply to Grandma1954
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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.
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Reply to Suzy23
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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
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Reply to Daughterof1930
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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.
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Reply to lealonnie1
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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.
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Reply to Cowboy563
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JanPeck123 Jun 10, 2025
So sorry that the Hospice experience for your loved one was so poor. Prayers.
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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.
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Reply to daughterofAD
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gnyg58 Jun 12, 2025
Like you I wondered why my mom's doctor didn't recommend hospice. I had asked her PCP about it when she was sleeping even more than before and was not as interested in eating. I wondered too why testing didn't seem to show worsening of her conditions...and if being told to discontinue one of her meds was the right thing to do.

After her last hospitilization and much thought, she did go on home hospice. She passed 2 weeks later. I feel we missed out on support and help we could have had if she has started earlier.
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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.
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Reply to Fawnby
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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
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Reply to MACinCT
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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.
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