How do I deal with half my family saying bring her home for hospice and the other half wanting to keep her at the boarding care home?

Take a step back and relax just to get some perspective.  And advise your brother and your children that you're in the process of assessment, and that the best way they can help is not to express their opinions, but get data that you need to make a decision. 

So, some issues:

1.   Has your mother executed a Living Will or other document to express her end of life wishes and allow you to make decisions for her?  If so, the family can offer their opinions, but they don't have the authority to make them.  

2.   Is the physician the only one advocating end of life care?   For something this serious I would get a second opinion, but it does seem as though your mother is at that stage.

3.   Either research online, ask friends, or get a list from the Alzheimers' Assn. of hospice companies that have facilities and those that provide in home care.  Know that in-home care isn't 24/7, so you'd either be stretched to your limits or need additional support; family could definitely help, so that's an issue to be raised with them, asking them to let you know when they could stay with Mom so you can get some rest.

4.   If you find local facilities providing hospice care, ask them questions (which you'll have identified before calling) and test their responses.   I found some that were recommended to me to be rather obnoxious and demanding, pushing to get my father signed up and committed before even providing decent answers to my questions.

5.    At home hospice was never a consideration for me b/c I knew I just couldn't do it.  And I also knew that when I wasn't there, people would be coming over to visit my father but not providing care, just disrupting his peace.

6.    After calling and visiting some facilities, I settled on one which turned out to be a very good selection.  I interviewed, toured, thought about it and went with that one.   One particularly impressive factor was that they did NOT push me to make a decision, and they also advised me that they could not ask certain questions during this interview process.  That was not the case with the aggressive companies, which I realized later had asked questions which were inappropriate.   I can't remember for sure w/o checking my notes what prying questions were asked.

7.   At the hospice facility, fFriends could come and visit while Dad was napping; he may have known they were there, and they could satisfy their need to be with him at the end.  And it left me time to relax before visiting again.   To me that was critical, b/c  the night I admitted him from the hospital, I was so tired and emotionally drained, I couldn't walk out of the facility.  I just slid down on the floor and sat there, completely exhausted.   One of the staff came by and helped me out to my car.

8.  Care during the hospice period was of high standard; the admins even intervened when I had a problem with 2 visitors and had to ban them from coming (one ignored this and came anyway).  

9.  Staff even brought me snacks, pitchers of water and a carafe of coffee during the last few days, so I could stay with Dad, but attempt to achieve peace.  

In retrospect, I'm glad I didn't even attempt at home hospice care; it would have been too much of a challenge for both of us.

I wish you calm, peace and comfort as you approach this challenging period in your family's lives.

This is such a heart wrenching time, isn’t it? I am so very sorry that you are struggling with your mom’s suffering.

It is tough when siblings have different opinions.

All I can say is that my mom is in need of 24/7 care and is receiving excellent care from hospice.

My mother can no longer turn over or walk to the bathroom by herself (advanced Parkinson’s disease) and is relieved to be cared for by hospice in an end of life hospice facility.

Hospice is absolutely wonderful! They can offer more care than we can at home. For instance, they have a round the clock professional staff, a social worker for the entire family and clergy for everyone.

They also placed a catheter in mom so no more diapers or struggling to get to the bathroom!

Please reconsider bringing her home. Are you allowed to visit her? I know some places have Covid restrictions. If you can visit, you can stay with your mom there. Meds can be given to ease any discomfort.

My brother died peacefully in an end of life hospice facility.
Take advantage of their expertise in providing care for the dying with enormous compassion.

We are here for you if you need a shoulder to lean on.

Just know that if you decide to bring her home under hospice care that 99% of her care will still fall on you or your family, as initially the hospice nurse will only come once a week to check her vitals and such(more if needed)and an aide will come about twice a week to bathe her. That still leaves the brunt of things on the family. Yes they will supply all needed equipment, supplies and medications, but her care will all fall on you. If you are prepared for that, then by all means bring her home, as I'm sure she would much rather die in her own home. But if that is not feasible at this time, then you must be realistic, and do what's not only best for your mom, but for you and your family as well. And that might very well be placing her in a hospice facility, where she will receive great care. However if she doesn't die within a weeks time, if you choose to keep her there, you will have to pay out of pocket for her to stay there. And of course if you keep her at the boarding house, hospice will still have the nurse come once a week, and an aide a couple times to bathe, so it's really up to you and your family as to what is going to work best for all of you. I wish you the very best in making this tough decision.

Do you or your brother each have your own home?
Has your brother explained why he feels your mother should be brought home?
Does your mother have dementia? Does she seem unduly distressed by her current surroundings?
Have your daughters explained their reasons for their feelings?
If your mother is already “confused” it would seem that she might feel even more confused if her surroundings dings were once again disrupted by attempting to move her an additional time.
Why does her present residence feel she’d be best to have Mom with her Hospice team at the home? Does that mean where she is now?
You can certainly be “right by her side” in either situation.

If your goals are safety, peace, and comfort, it would seem to me that an additional move might disrupt her circumstances more than moving again, even if moving would mean to a place where she’d lived when she was well.

Keep in mind that if your decision is made with love and concern for her actual care, “opinion” doesn’t count.

Hoping you can move forward with Peace.

You and brother live with her. He said no, which means he is not accepting responsibility of 24/7 care. Your daughter said yes - so ask her if that means she is going to be available to help you with 24/7 care. You will probably not be able to handle care for someone in her condition totally alone, so base your decision on the help you can absolutely count on.

The plus to her being at a facility is that you actually get to sit with her, comfort her when needed, and be a source of calm for her instead of being a stressed out caregiver. Comfort and you being with her is worth far more than a very slight possibility she is even concerned about being in her own bedroom.

If you and your daughter are willing to handle this VERY DIFFICULT care 24/7 then you are free to bring her home. I believe, as others said, that your brother is saying he will not assist, so you are forewarned. Most Board and Cares will not keep hospice patients. Most hospice today provides an uptick in care, but not a lot of people right there. So this care will be on you.
Are you clear that this is end of life care, that there will now be no tests and treatments toward "cure?' That is to say do you fully understand what hospice means?
I would say only you know how much full time hands on care you can do together. If it is all on YOU I advise against this. If your daughter can share in care it "may" be doable if you wish to do it.
I wish you luck and hope you'll update us.

It’s possible she can recover & then need to care for her 24/7. Stranger things have happened. Then what will you do? Pneumonia needs hospital care...Will you give her intravenous antibiotics? If it was me, I’d insist they keep her in hospital till pneumonia gone...Does rehab facility also have long term or hospice? I’m confused as to what a boarding care home is....being in her own bedroom not important...she may not recognize anyway...if she’s sleeping all day.. You will regret taking her back home...that’s all I know!
Hugs 🤗

If the Boarding Care home says its best to have Mom in hospice at the boarding home, rely on their professional opinion. 24/7 care for a completely disabled adult involves feeding, changing diapers, cleaning up messes, bed bathing, special diets, medications, physical transfers between bed, chair, etc. If you have never seen the toll this takes on caregivers, spend some time reading the forums here. Its not easy, and expect no thanks from your siblings. You will completely give up your own life to caregive. The Boarding home has the experience, the equipment and the trained personnel to care for your mother in this difficult time. Let the Boarding home take care of your mother's physical needs; you can visit her often, and then spend your time with her loving and comforting her instead of falling into overwork, potential despair and resentment toward your siblings (the ones who don't help you because they didn't favor moving your mother home) due to the demands of RTC caregiving. And don't resent your siblings who don't favor the move; they, too, are coming from a place of love and concern for your mother's well being.

dear kat, sending lots of love to your mother and you. you sound like a very loving person.

i would say...listen to your heart.

you wrote:
“I believe that Mom would want to be in her bedroom and I've told her I would be right by her side in her last days.”

you know your mother best and what she would want. most of us, prefer if possible, to die at home (rather than more time “alive” but in a hospital/nursing home/etc.) (i understand some nursing homes are “nice”, but most of us would choose home if we can).

if possible, i would prefer 10 last days at home, rather than 10 months in a nursing home. if i were dying, i would want to die at home. if possible, surrounded by my loving family.

dear kat, you know the full situation best. do what is good for you too.

the best decision, so there are zero regrets.

bundle

Do you have enough support and help for around the clock in home care? I did this with my dad, had to hire extra help, but if it had continued much longer I would have needed another plan. It’s exhausting to provide total care 24 hours a day. I have no regrets about my dad being home for his final weeks. But I know it wasn’t sustainable for much longer either. I wish your family peace and rest in this, I know it’s so very difficult

Ask your brother and daughter why they don't want your mom at home. Listen to what they have to say. They obviously a have different perspective. They already know the task is more than they can handle. Consider how you and your other daughter will feel when they say no to helping out even with small tasks.
It's okay to let someone else do the hard work and you just get to be the daughter.

Spend most of a day with your mom and take notes about what the staff are doing to care for your mom. Can you do this at home without help? If she needs help 24/7, how long could you sustain this type of effort if family members are not willing to help you? After you have answered these questions, you will know whether or not to bring her home.

I don't think it's important to have your mom at home in her final days, but to have her comfortable and properly cared for in her final days, where her loved ones can be with her for long periods of time. If she's totally incapacitated and at home, you'll be totally stressed out and then what? That's not the calm & serene end of life experience anyone wants for their loved one or their family members. What's most important is that everyone have peaceful memories of her final days; memories of love and peaceful interactions where she's feeling relaxed and in no pain. That would be the environment I'd want for myself and for my children at the end of my own life, so I would expect your mother would want the same for herself.

Taking care of someone on hospice at home is a HUGE undertaking and unless you have a medical background, one you may be unable to handle, frankly. If the boarding home is saying it's best to have mom with her hospice team at the home, I'd take them at their word on that. They have an awful lot of experience in these matters that you and your family members do not.

Allow everyone to have the most peaceful experience possible where your mother is allowed to transition with dignity & grace. Make your decision and inform the rest of the family of what it is. You can't please all of the people all of the time, so if you are the one designated to make the decisions on behalf of your mother, then you have the final word. The others will just have to accept it.

I'm so sorry you are going through such a thing; I know how hard it is. My dad was on hospice in the Assisted Living community he lived at at the time, which was a huge blessing to me. I know I would not have been able to handle the ordeal at home myself; it's really just too much to go through, at least it would have been for me. I was grateful for the entire staff at the AL and for the outstanding services the hospice team provided. Dad passed with no pain or agitation, and even then, it was a very traumatic event to encounter.

Wishing you all the best.

I cared for my dad at home on hospice, plus my mom who has dementia and pretty much slept all day. I did it for six weeks, and while my dad wasn't completely bedridden until the last couple of days of his life and I never had to deal with diapers, I lost 10 pounds and never had more than four hours of sleep a night. I finally hired overnight help three days before he died because I was on the verge of collapse from exhaustion, and the day before he died, I called hospice and said I couldn't do it anymore. A nurse came within two hours, and he died about 20 hours later.

I think that all in all, I had a pretty easy time of it.

Having read accounts others have posted tells me I couldn't have done it if my dad hadn't passed away fairly quickly after becoming ill. My mother is now on hospice, but she's incontinent, wheelchair-bound, has severe dementia, bizarre after-effects from a bout with Covid in January, and doesn't know me. She's in a nursing home surrounded by loving caregivers, and if she begins to transition, I'll be allowed to be with her. (They still haven't opened up for visitors at her place.) For her, that will be the best for her considering her issues.

I have to mention one other thing that was not made clear to us when my dad was dying at home: He died upstairs in a spare bedroom (Mom was still in their room), and the mortuary people were unable to get a gurney up the stairs and make the 90-degree turn at the top to get to the bedroom. A gurney is not light, and neither is a body -- even an emaciated one -- so my poor brother had to be enlisted to help carry our father's lifeless body down the stairs, put it in a body bag, and on the gurney while I kept my mother in another room. It was a heartbreaking task for all of us. Carrying someone so completely limp really brings home that they're gone.

If you decide to bring your mother home, make sure she's in a room that has easy access when it comes time to remove her body. Trust me, you don't want to go through that or have someone in your family have to do it.

Contact a hospice company and just talk to them about what hospice care entails. They'll be happy to explain it all to you.

Who will care for her when she is at home? It is a 24/7 job. A job that 1 person can not do and you can not depend on your daughter to help. (and you shouldn't expect her to help, if she does great) Will you hire caregivers both day and night or just day time hours?
Is there a room where a bed can be set up? Is there a bathroom that can be used for her? One that is large enough to get the necessary equipment into? Or would she have bed baths? If you put her bed in her bedroom she will be isolated from all that is going on, placing the bed in a living room or dining room area will be a more central area and easier to care for her since the kitchen would be nearby.
There might actually be 2 "problems" here.
1. some want Hospice
2 some do not want Hospice.
or is it your brother will accept Hospice but not at the home he lives in?
Some people feel very strongly that they do not want to be in a house where someone has died. If he plans on living there this might be his real concern.
If it is the case that he does not want mom to die in the house he is living in you have to validate his concerns and discuss this aspect of it.

While we have not had to face this situaiton in our family, I believe those advising that mom stay at the boarding care place, with hospice service, are correct. However, one thing you mentioned which no one seems to have picked up on is that your mom has long term care insurance. If she's satisfied whatever the waiting period is for the LTC policy to kick in, you could in fact hire 24-hour care for her at home on top of what hospice will cover. That way, family could be with her without having to provide the hands on care.

Kat Kat,
My mother was in an assisted living home (she had dementia/ALZ) when she had a heart attack. The doctor at the hospital said she only had hours to live, but she lived for another 3 weeks, denying that she had a heart attack and was just fine. The hospice staff and AL staff were amazing! My sister and I were allowed to stay with her 24/7 and they even gave us one of the unoccupied rooms to use for sleeping (we took turns sleeping in her room so she wouldn't be alone). Even though my mom always said she wanted to die at home, she was at peace being at the AL, especially since my sister and I were able to be with her. Her last moments were beautiful, with the hospice pastor praying over her as she took her last breath. My hope for you is that you can have many special moments with your mom before she passes and that the hospice team will make her remaining time peaceful and pain-free. (((Hugs)))

If you believe in your heart, that your mom would want to come home, I would bring her home and get her into hospice. My formerly physically healthy mom became ill with Covid and had to be hospitalized for almost a month, then went into rehab for a month. She left the hospital attached to O2 full time (maybe for the rest of her life, tbd). I spent 2 months coordinating with multiple doctors, therapists, O2 companies and the AL facility where she lives. Done of them “talked” with each other, and I was trying to learn how each organization did things and update my family along the way. Finally, a nurse at the AL facility suggested hospice. This is only her 3rd week with hospice, but it was a great decision. Mom was able to go home, the AL facility who recommended them coordinate care with them, they go to my mom so I do not have to get her out in the Colorado weather toting a heavy O2 tank for dr. appointments, and Mom gets more 1:1 personalized attention. They respond quickly to any of my concerns and report via phone how it went for the week. Mom also has dementia pretty badly, which has been exacerbated by Covid. I highly recommend hospice for your mom, AND for YOUR peace of mind regarding the care of your mom. They are actually angels walking around on earth, we just cannot see their wings!

Caregiving is very hard, and it is very stressful, and what you do can only be your and your family's decision--but I hope you got estate planning done including pre-arranged funeral. That should be a top priority.

Be aware that one can live for multiple months while in hospice.

Whatever you decide, she has the right to have hospice no matter where she resides. The important thing is to get her on it. They will make sure she has a pain free passing. They are a Godsend.

I’m sorry you’re at the end of your mom ‘s journey & faced with these decisions-it’s not easy! I cannot say enough great things about hospice and their services! Your mom’s last week should be with family under the care of hospice so she’s comfortable until she answers God’s call. Enlist family, friends, neighbors as needed. You’ll make it, and Mom will appreciate it. Say what needs to be said even if mom is no longer conscious. She’ll hear you and it will lighten both your hearts. God bless you, your family and your mom❤️

I believe that honoring what your mom would want is the best thing you can do for her, no matter how difficult it is for you on your end. Everyone is significant no matter what condition they may be in, every single moment until we pass. I work for hospice myself & am heartbroken that my dad & POA brother have chosen to move my mom from hospice at home with caregivers into a nursing home. She is socially isolated from those that love & care for her deeply. She has Alzheimers, my parents have been married for 63 years. My dad is 83 yrs old. I fully understand he can not take care of her alone at home. I would be more than happy to contribute financially to 24/7 home care along with Hospice - I refuse to contribute financially to an institution, that is how I personally view a nursing home. Hospice is amazing. I have worked with a group for 8 years in my town of Washington NC & am devestated that my own family puts their comforts & conveniences above her significance. That is how I view it. Having a plan at home with Hospice is the ideal for my mom, that is where she would want to be if she could speak for herself - her own bedroom as well. I will never stop being her advocate & fighting to get her home. I don't have the authority to make the decisions my Dad does or my POA brother but they will never stop hearing from me about it. My mom deserves to be around those that love her - every day until she takes her last breath. End of life is just as important as beginning of life. She helped me when I couldn't help myself. I want desperately to help her while she can no longer help herself. I am certain she would rather be with family, in a familiar place where friends could visit, than a building full of strangers. Think of what your mom would want, do everything in your power to honor that, even if it's different than what you think - nespecially when you think it's different from what you would do... it's not about us, it's about them... everyone's wishes deserve to be honored. Period. Never give up & never forget, we are all significant every single moment we are here. Yes, this is hard but you got this. Focus on her. Period.

Kat - just want you to know that many types of antibiotics can cause delirium - so her not recognizing you could be from the antibiotic or infection (if they did start meds for her). My mom had a stroke 2 years ago January and any antibiotic brings on delirium and some episodes so extreme that she is to never have some class of antibiotics again. My moms delirium from infections as well as antibiotics bring me back to what feels like the first month after her stroke when she was so weak. Usually within the week of her infection clearing I start to see her slowly regain herself - her swallow - her cognitive state - her being able to talk and recognize again etc. Thinking about you and wishing you a peaceful journey surrounded by a great team of support.

Bring her home.

Bring her home
it will be a better transition to the afterlife for mom and you

You are dealing with so much and I am so sorry. I'm afraid you may not realize how much stress and a burden, even from a physical standpoint, you may generate by having her at home without additional help just to tend to her body's physical needs. In fact I'm surprised they can deal with that at the board and care home. These days many towns have more than one hospice program. They have the staff with knowledge to understand where she is at physically. See what kind of care and support you could expect if mom were home in her bedroom. It could be the board and care homes decision is based on their own profit making motives? Have you considered she may be more confused with a move? No matter what, nothing should prevent you by being by her side. Take good care...

Some people aren't physically able to roll a patient in bed to clean the feces off of them. When I had to help the hospice nurse do this with my stepdad, I knew I could never do it alone and she told me she would help this one time but it was not the job of hospice to come do this 24/7. It would have been on us to do. Go help do this now where ever she is, and see if you can handle it.

There are some good answers here. I would just like to add that the advantage of split family opinion is that you should ultimately do what is best for YOU. No matter what you do, half the family will disapprove. I also would not put too much energy into which place your mother would be likely to prefer. She may not really be so much aware of the building where she resides as the fact that you are with her as much as you can be. You cannot be with her 24/7 no matter where she is. Think about how you will get your rest so that you communicate your love and concern to her, not exhaustion and weariness. At the end, the emotions you communicate is just about all there is for both of you. Make them as sweet as you can.

If she requires 24/7 care, consider the amount of work it will require and whether you will have assistance.