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Val622 Asked February 2022

Has anyone brought their parent home from memory care in their final stage?

Hi. My mom has been on hospice a year in her memory care unit. She is so thin and doesn’t really eat. She is late stage Alzheimer’s. Makes no sense when she talks, sleeps a lot, and has been in a wheel chair for two years. I’ve always had guilt about her being there, but I know if I’m not there when she passes it will be worse. Has anyone taken their loved ones home at the very end? I know there is no predicting what will happen, but is there usually some indictation that the end is near so I can be with her if she stays there?

Val622 Feb 2022
Thank for for all your advise and kind words.

MJ1929 Feb 2022
I don't know why seeing that a loved one receives excellent care in a facility is cause for guilt. You have done an admirable thing by making sure she received the best care possible, so I don't know what the guilt is about.

However, I think you need to realize that your motivations for moving Mom are entirely for your benefit and not hers. Honestly, I think that if you bring her home, your guilt will increase because you'll be exhausted from caring for her around the clock as well as grieving, and you'll second-guess everything you did. Are you prepared to administer morphine and anti-anxiety meds when her breathing becomes labored? It isn't fun to watch -- I've been there.

You need grief counseling more than anything. Your mom is going through an entirely natural process. Whether you're there at the end or not is entirely up in the air. You could be in the bathroom at home when she dies and still miss it. I don't believe in the theory that some people choose their time to go, so you're really just trying to control something you can't. I was with my mom for three straight days at her MC, and she died an hour before I was to return on Day 4. It was what it was. Her nurses and caregivers were in and out of her room constantly, but she just went to sleep somewhere between that. I was able to say goodbye every time I was with her for 2 1/2 years, so I have no regrets.

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lealonnie1 Feb 2022
When my mother had a change in her condition and went into a semi-comatose state, hospice called me immediately to let me know. I went down to the Memory Care ALF where she lived and spent many hours per day with her for the last week of her life; I could have spent the entire night with her if I wanted to, nobody would have asked me to leave. I feel she was much better off in the MC b/c she had 24/7 access to the caregivers who took PHENOMENAL care of her, the hospice team who was there daily, giving her bed baths, and medications, etc., and calling me with updates all the time. I had plenty of warning that she was declining each day; I could see it with my own eyes. And hospice let me know how long they thought she had left to live so I could prepare myself accordingly.

On the day she died and the rattled breathing began, I knew in my heart she'd pass that night. I spent 5 hours with her, talking to her, holding her hand, and just smoothing her hair. I decided to leave before she took her last breath b/c I did not want to be there for that event; I did the same for my father. I did not want my last memory to be of that struggled moment which would be etched in my mind forever. She did indeed pass that night at 9:30 pm; I could have been there if I wanted to. Instead, I came back to the MC with my DH after I got the phone call that she'd passed.

You can take your mom home with you or you can do as I did; go to the MC and spend as much time with her as you'd like when she's approaching the end of her life. Please don't let 'guilt' motivate your decision....you have nothing to do with when your mom passes and have no way to change anything about how or when God takes her Home. That's the truth. It is my personal opinion that the soul leaves the body long before the body itself expires; we are only watching the body as it struggles to stop functioning here on Earth. The essence of our mothers are already rejoicing on the other side as we sit there weeping over the death of their bodies.

Wishing you good luck and Godspeed at this difficult time of life. There is no easy way to say goodbye and to process this tremendous loss. Sending you a hug and a prayer for peace.

Grandma1954 Feb 2022
Can you manage her care in your home?
Hospice will provide all the equipment that you would need to safely care for her.
How many caregivers will you hire to help out? One person can not do this alone. I had caregivers 5 days a week from about 9 am until 4 pm. And I had the Hospice CNA 2 then 3 times a week to help shower him and later bed baths,. The Hospice CNA taught me how to change bedding with him in the bed, showed me how to change his brief in bed, how to reposition him and make him comfortable.
There are indications when a person transitions to "actively dying" and more indications when death is very near. hospice will explain all of this to you.
I did not take my Husband home, I was lucky enough that I was able to keep him home the entire time. (was only able to do so because of Hospice)
Talk to the Hospice Nurse and or Social Worker and ask what is involved.
Another option you could ask if mom could be brought to the Hospice In Patient Unit and you would be able to be with her for as long as you wanted.

funkygrandma59 Feb 2022
Your moms hospice nurse should be able to let you know when they think her time is drawing near to the end, and you should then be given the choice to keep her where she's at or have her taken to their hospice home, where she will be comfortable until the end. Hospice homes are beautiful, peaceful and very intimate for all involved. I would opt for the hospice home over bringing her into your home, as they are better trained how to care for someone at end of life.
And you must remember too, that your mom may not want you to be there when she dies, as often the dying person waits until their loved one(s) is/are out of the room before they take their final breath.
I kept my husband at home the entire 22 months he was under hospice care, and slept next to him on the couch(he was in hospital bed in our living room)during his entire 6 week dying process, and he died overnight while I was asleep on the couch. He knew that I loved him and that I was going to be ok, so he chose to leave this world without me witnessing his last breath, and I am ok with that.
I pray that God will give you peace and comfort as you take this journey with your mom. God bless you my dear.

AnnReid Feb 2022
If you are working with a hospice, they may have counselors who can answer your questions and help you through the process as well as helping her. Yes, you will

I can tell you that your “guilt” as a reason for ANY decision making on behalf of a vulnerable LO is probably very low on the “great idea list”.

If you are talking to a hospice/grief counselor, or have a counselor for yourself, ask if you can discuss your guilt feelings now, so that you can have all your resources available for your mom.

I will tell you with total honesty, that I know and understand your sense of regrets for what you could not do. I have those feelings myself. I have come to be able to understand.

I make my decisions right now based ONLY on what I can consider what is safest and/or most comfortable for LO. I cannot let my guilt or regrets enter.

I KNOW that disrupting LO’s life as it in her residence would be painful, uncomfortable, and unkind to her, and the ONLY BENEFIT MIGHT be that I’d feel a little better myself. I’m choosing what I think and hope and PRAY will be right for her.

Countrymouse Feb 2022
I'm so sorry, Val.

Wouldn't it be more practical for you to plan extra time with her in her memory care unit?

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