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KatKat124 Asked March 2021

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?

My Mom had a stroke this Jan, first she went to the ER, then to a Rehab then to a Boarding care home. She was at the home for 3 days, got a fever so she was taken to hospital. She has Pneumonia and several other problems with her organs. The doctor is talking Hospice to me yesterday. My brother and I both live with Mom now. I want to bring her home, my brother does not. One of my daughters wants me to bring her home and the other does not. The Boarding care home says it will be best to have Mom with her Hospice team at the home. My Mom needs 24/7 care, she can't walk or talk, and she is very confused. She is incapacitated! I am so confused as what to do. 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. Thank you all.

GardenArtist Mar 2021
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.

MJ1929 Mar 2021
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.
bundleofjoy Mar 2021
dear mj,

that sounds incredibly traumatic.

sending lots of love to you and your family!!

and i understand, keeping your father at home in the last days brought you to the verge of collapse.

i’m sending lots and lots of hugs to you and compassion!!!

bundle

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Taarna Mar 2021
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.
KatKat124 Mar 2021
Thats what I have been thinking. Watch them and see if I could do what they do. God Bless you and thanks..kat
Grandma1954 Mar 2021
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.

NeedHelpWithMom Mar 2021
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.

lealonnie1 Mar 2021
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.

stilldealing1 Mar 2021
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.
KatKat124 Mar 2021
I have did alot of Research about bring mom home to her house. You said it all the Special food, changing her transferring her ...etc is overwhelming. And I am glad that God has helped me find a small residential care home where they let me visit her .unlike all the large nursing homes I researched lately. Thank you so much...kat
melsharpe Mar 2021
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)))
KatKat124 Mar 2021
Thank you for your words.. Went to see mom she had just got to the Boarding house with hospice. The nurse that checked mom in was one of the nicest person I've ever spoke with.. he has been doing this for 30 yrs he said that mom looks like she will die within a week. He said her body was breaking down. And they will make sure she is comfortable. And I believed him ...kat
funkygrandma59 Mar 2021
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.
KatKat124 Mar 2021
This is what I really needed to hear. 90% is alot. I believe what others have said she really might not care about her own bedroom at home. I know her well enough she just wants to be comfortable with little pain. She HATES pain!!! The Boarding care home only has 5 other elderly people there. And 2 caregivers live there. Also mom has 2 longterm insurance policies that will take care of alot. I pray that she will be with me much longer but we never ever know when God will takes us. God Bless..thanks..kat
LittleOrchid Mar 2021
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.

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