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?

KatKat,

God bless!!

I am so sorry for your struggles. For my mom (on medicare) hospice did NOT provide a helper. they only sent someone to bathe her 3x week. So you and other family will have to care for your mom 24x7. If on Medicaid, the Medicaid will pay for a respite care worker for (i believe) 20 hours a week. So, please talk to the social worker and make sure you have all of your questions answered. or call medicare or Medicaid directly.

KatKat124: I am so sorry for the loss of your mother and send condolences.

Katkat, I am so sorry for your loss. I know what you are going through as my mother passed away in October.

Prayers going out to you and I wish you peace at this very difficult and emotional time.

Kat, I’m so sorry for your loss. My mother and I were close and I know the loss brings a unique pain. Mine was also mixed with gratitude that her suffering was over. I wish you peace and rest in the days to come

Kat,

I am so very sorry for your loss.

It’s natural to wonder at times what is the correct path to take. I feel that your mom was in the best place possible.

Hospice care is extraordinary!

I am so glad that you are at peace with the decisions that you made.

May your sweet mother Rest In Peace. She knew how much you loved her. It was completely obvious to me how much you cared.

Please stay in touch on the forum if you are so inclined.

I am going through the same situation right now. My mom is in end stage Parkinson’s disease. She is in an ‘end of life’ hospice house.

I can’t imagine mom living with me or my brother and sister in law again.

It would be too hard to care for her. She is completely bed bound now.

In a hospice facility she can be monitored 24/7. It truly is best all around, for our parents and us.

Mon passed PEACEFULLY this morning at 2:30 am. In Hospice at the Boarding care home. They were the best choice I made. They treated her with so much care. I am so happy she is out of pain and with her Heavenly Father and other family and friends. I want to say that this morning all my nerves are very calm now and it is really a strange feeling that mom is gone ...🙏😥🌺🥰 thank you ALL for your answers and post here on AgaingCare it has helped me these last 2 yrs everyday when I read my emails for the site. Love All...kat

This is a really tough one. Being she is in her current state, she will need intensive 24/7 care and I am not sure in my mind that everyone will be willing to do this. Perhaps they are simply not suited to do this or have their own responsibilities or realize the amount of care she needs. It will all fall on the shoulders of one while the others do nothing and resent the intrusion and this alone will cause family problems among the remaining home bound people. Think long and hard. She is very ill, elderly, confused. Why not make arrangements to spend a lot of time with her in hospice or in the place where she is to give her love and attention - they will be able to care for her and she will be safe. And as to hospice at home, I would not count too much on that. If ?? they show up, they are there only a short time. When my husband was dying of pancreatic cancer, I was terribly disappointed. They did almost nothing for him.

Do what is right for you. It sounds like she needs to be taken care of in a facility.

Don’t feel as if you are responsible for home care. It’s too big of a job at this point.

Bring your mom home and have Hospice care for her in her own home.

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

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.

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.

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...

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

Bring her home.

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.

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.

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❤️

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.

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

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.

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!

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)))

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.

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.

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.

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.

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.

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.