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My mom with late stage Alzheimer's is sleeping most of the time now, taking very little nourishment, and curling herself in a fetal position. At least one person from the Hospice staff seems to be coming every day. I just moved her into a house where a couple cares for two people at a time. She hated all the noise where she was before. I thought at first the sleeping was from being really tired from the move and all the excitement because she was really happy to be in a house with a dog, a beautiful yard, and incredibly sweet people. It's really quiet and peaceful compared to the long term care facility. Hospice is bringing music for her and she likes that. It was day 5 in this environment that she just wanted to be left alone. It's been 4 more days of not wanting out of bed. Her caregiver is a retired nurse and says she's seen this before, that she maybe feels safe now and is ready to check out of this life. She went from being a one person assist at the long term care facility to now needing a lift to move her. She had been able to stand and take a few steps and now cannot. I visit a couple times a day. She seems fine with me putting lotion on her and massaging her hands, feet, and neck, but if I just sit with her, she seems annoyed, opens her eyes and says "WHAT". Otherwise, she will ask for more of the milkshake or water and fall back asleep. She doesn't answer if I ask if she wants me to leave her alone. She hates when people have to change her or reposition her and tells them to get out of her room, which is not her usual demeanor. So my question is should I sit with her? I'm not a big talker, but I quietly relay memories to her like I've always done. It seems to me, though, that she doesn't want the comfort I'm offering. When I arrive and the nurse tells her I'm there, Mom says that I'm a good girl, then falls back asleep.

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Artist, I was a hospice volunteer for a few years and saw many situations with people near the end. I don’t think this is unusual. It’s very hard to tell how cognizant people may be at this stage. I did have a couple patients express that they wanted to be alone at the end. It seems counterintuitive to us but makes sense in some ways.

As volunteers were were encouraged to wake patients up for visits. I rarely did this when folks were near the end. Even when my dad was dying, he was sleeping most of the time, only woken by a nurse now and then to check vitals and give meds. He would sometimes smile at me but I don’t know if he knew me. So I’d just sit and be with him. It was fine. He died peacefully after a few days.
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Reply to Windyridge
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ArtistDaughter Oct 21, 2021
Thank you. That's very helpful. This is so difficult. I want to do what is right.
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It could very well be that your mom wants to be left alone. Everyone wants to be left alone from time to time. She's probably ready to go and wants to be able to do so.
Many times a person will not let go and go in peace to the next life if there's people by them every minute. They think they have to hold on for some reason.
If it doesn't seem like she wants the comfort you're offering, then only stay with her for a few minutes and go into the other room. Cut back your visits to only once a day.
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ArtistDaughter Oct 21, 2021
Thank you. People keep telling me to be there with her, but I think she may not want that. I've been caring for her for 10 years, so I've learned to read her pretty well.
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I can only imagine how exhausting it is for an Alzheimer’s brain or dementia patient and as the disease process progresses it simply gets harder for their brains to process. Wether living in a time and space from the past or simply trying to make sense of who’s in front of them and what’s happening now it takes energy. Physiologically our bodies shut down various organs to preserve energy our respiratory systems to provide oxygen, our hearts to pump blood and our brains to direct those functions. Everything takes energy and processing takes increasing brain energy as the pathways shut down. The closest thing I can relate to is when I’m working on something important that requires a lot of concentration most of the day and then can’t understand why I. So tired since I haven’t gotten up out of my chair all day! Same scenario when I’m trying to concentrate on something important and there’s all this other noise in the room so it takes me twice as long! This is what I imagine it’s like when the normal pathways in someone’s brain are no longer there and they are trying to access the files that enable them to grasp what’s going on. It’s hard, exhausting work. I don’t think most brains are equipped to block out the noise, if you will, they are programmed or conditioned to take in information from all of our senses as well as our memories, process and react or send out responses so it isn’t a choice to receive the sounds we are hearing and process them somehow or “recognize” the face in front of us wether it be friend or foe and yes when our brains are hurriedly performing these functions because the processing is backed up it fills in the blanks as best it can and makes mistakes. Like speed reading we only actually process every other word and our brains string them together based on what it knows. The compromised brain looses its ability to catch the mistakes and go back to correct them. Maybe this is why many people go back to childhood or some other time in their lives, it’s simply easier to process than keeping track of this present world. When your moms brain no longer had to do something with all the extraneous stimuli she was able to relax and be peaceful.

I remember the feeling as a child of safety and love just curling up in my mothers arms while she stroked my hair and as I got older that feeling only happened when she just let be curl up with her no making me talk about it or even think about it just the ability to be while snuggled up next to her. As we become adults it’s harder to just trust and let go this way, be a child and received as well as give comfort without any need for explanation. The only times I can really say I have felt close to that way again as an adult is on two occasions when I was very ill and let my mother comfort me this way again. It is often pointed out that as our elderly dementia stricken loved ones digress they become more like children, maybe that enables, those that let it happen anyway, to experience that pure comfort, love again before they pass. I hope you can take take great joy in the fact your mom responds to simply having you rub lotion on her and sit quietly holding her hand maybe reading her a book sometimes, all those things that make bedtime so special with our children. Maybe this is also why you get the negative reaction when you try to engage her or ask her to make a decision and a positive one when you make the decisions for her without speaking, your giving her the control to speak and the love to enjoy the moments with her.

This time is for you as well. You need to be taking care of yourself and you can now with her safe and cared for. If you need to spend less time with her because of life commitments or simply emotional drain, take that time, do whatever you need to to get the most out of this time with your Mom because that in turn will give her the most out of this time as too. Listen to your instincts about what’s best for each of you, they sound right on so far. 💜
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gayeluella Oct 23, 2021
Thank you for your very wise insight into the dying process. I wish I had known this when my husband was on his way to passing. Thank you.
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You are a good daughter and trying to help as best you can. I would suggest that you continue to visit, to apply lotion, to tell her you love her... I would also suggest that you make sure not to put your life "on hold" as you are waiting for her passing. You need to have the companionship of other family members, friends, members of your faith... You need to take care of your essentials: sleep, nutrition, health care, work... Until your mom stops eating and stops drinking, she can continue this way for long time. When she refuses food and drink, you know she has about a week.

Your mom is probably more bothered when you are just sitting next to you and "staring" at her. If so, encourage her to rest while you apply lotion or read something soothing.
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Reply to Taarna
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I’m sorry to say I believe she’s actively dying. She’s also withdrawing from you to make her future demise easier on the ones she loves. My mother did the same. At the end she withdrew and would say “ go home”. I stayed and climbed in bed with her and held her when she took her last breath. I’m thankful I could give her that comfort even tho she was trying to shield me from the pain of seeing her die. Sit and hold her hand. Pray with her and tell her it’s “ ok to go and you will be ok” I have no regrets tho I miss her every day.
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ArtistDaughter Oct 25, 2021
Thank you. I give her big hugs and a kiss on the forehead every day and that makes her smile, even when she seems asleep. She is not able to communicate well. Usually her words cannot be understood. Today she blurted out baseball. She loves baseball. The other day she said Harry was there. I have no idea who Harry is. Since she can't talk well any longer (it was covid that did that to her) it gets difficult to know what she wants. She is not afraid of death though. It's just her confusion I worry about.
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Maybe when you talk Mom feels she needs to respond so gives the impression she wants to be alone. You can quietly sit there. She will sense u there but does not have to respond.

A person who suffers from ALZ and goes thru all the stages does go into a fetal position in the end.
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ArtistDaughter Oct 23, 2021
Thank you. I started just hold her and putting lotion on her quietly, and she started talking. Now she is laughing at anything I say and hallucinating, seeing people from her long ago past and very happy to see them. It looks that her hands are trying to knit the air in front of her. Mostly she seems content.
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My father in law hung on until my mom finally left the room and I told him he did good in this world, and promised I'd take care of mom after he goes. He died before she came back in.
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Katefalc Oct 23, 2021
This happens a lot. I’m a retired nurse and used to see it all the time with couples who are very close .
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Sounds to me like you are a "good girl." Not much else you can do. She appears to be at peace, and that's what we all want for ourselves and our loved ones.
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Reply to Debstarr53
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Enjoy the peaceful time with her. With dementia, the world around her is confusing and it’s difficult to make sense of it. The simple act of being there and quietly visiting with her, shows that you care for her and that she’s not going through this season of life all alone. Big hug!
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I am sorry to hear this as it does seem like your mum is ready to go and it is hard for you. However you have been so kind and considerate and your mum realises this. I would continue to do the things she seems to enjoy and sit quietly beside her when she seems to need peace. Be kind to yourself as well as to her, you are doing a great job.
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