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.
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.
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.
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
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.
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.
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.
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)))
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