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.
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.
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.
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. 💜
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.
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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