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I'm full time caregiver to my 90 year old Mom with advanced dementia. I always feel the need to entertain her when she's up. I play her favorite music, look at old photos with her, in addition to bathing, diaper changing, feeding, etc. Yesterday I was very tired and we just sat quietly. She dozed on and off, repeated phrases and grasped for things in the air. I felt guilty that I didn't entertain her - is this daft?

From what you describe I think you are doing a wonderful job. My mother is the same age. She is immobile and resides in a NH. I realize that is very different than having your mother in your own home. Since your mother fatigues easily why not just let her be at those times and use that time for yourself. It doesn't sound as though she wishes to be constantly engaged nor has the energy for it. I don't know if the TV provides any distraction for her. You are not responsible for constantly engaging her and are obviously doing quite alot already for her.
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Reply to Riverdale
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Give her the book of photos to look at while you do what else needs to be done. Or just sit and read a book for your own pleasure.
Do you have children? When they were 4. 5 years old did you sit with them every moment and entertain them? I am guessing not. You went about and did daily chores. do the same here.
Give mom socks to pair, towels to fold.
Can mom stand for any length of time? If so maybe she can wash dishes. A few cups and saucers in the sink.
Or just turn on the music, any kind not just her favorites (unless you enjoy it as well) and let her look at the photos, doze off.
Increased sleeping is part of the decline with dementia.
Also if it is possible get her out for a walk or just out for some sun a bit each day even if it is just sitting on a porch, deck, patio...Sunshine, birds singing it is good for Body, Mind and Spirit.
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Reply to Grandma1954
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Not daft, just loving. But I don't think you should feel obligated or guilty. Have you tried giving her a "task" like folding towels, sorting and pairing socks or sorting items (like plastic utensils)? She may not take to it, but if you have these items in your home it won't cost anything to try it. When she's done folding you just jumble them up and give them back to her. Also, wooden kid's puzzles that aren't that difficult and have larger pieces. These sorts of activities give people with cognitive issues a sense of purpose plus the added bonus of burning energy (both physical and mental) and can help them sleep better at night.

Several years ago I purchased about a dozen dvds of classic musicals for my aunt with advanced dementia. She didn't want to watch them then but now she watches one every night and sits quietly. She likes reading the captions even though she's not hard of hearing. The stories are happy and upbeat and don't have anything scary in them. It keeps her occupied for 1-1/2 hrs every evening. You need to give yourself blocks of time to have your own life. I'm sure your mom would want that for you :-) Blessings!
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Reply to Geaton777
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No one can entertain their LO all the time. I think about when my children were little. There were times when as a mom, I had to put them in their playpen so they could occupy themselves while I got other things done. Or as they got older, put them in their room to play and occupy themselves, again so I could get other things done. It's kind of the same really. You are doing the best you can, and it sounds like you're doing a really good job, so please don't feel bad if once in while you just want a break or have something else to do. It's called being human, not daft.
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Reply to funkygrandma59
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At least 25% of the residents who live at my mother's Memory Care Assisted Living are asleep on the chairs in the activity room ALL the time, even while movies are on or when activities are happening! With advanced dementia at play, it's not necessary for you to be running yourself ragged for your mother who'd likely rather be sleeping or involved in her own headspace. Give yourself a break and permission to relax, you're doing more than enough already.
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Reply to lealonnie1
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You shouldn't feel guilty. You are doing a LOT for your mom. That level of care and interaction sounds exhausting to me! How do you ever get anything done? How long have you been caring for her?

Be careful not to burn out!
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Reply to againx100
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BernerMom May 27, 2021
Thanks for your reply. It IS very depleting. She and my father came to live with me 18 mo this ago. Dad died just before Christmas so it's just the two of us. She had been sleeping until the afternoon so I got my things done and had me time in the mornings. That has changed and she's up all hours, especially during the Full Moon period. Last night was beyond the pale.
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Guilt? Really. When did you willingly and happily act as a felon? That is the person who need to take on guilt. I think you mean grief. Grief for her that you cannot make her happy. Grief for yourself that you are losing yourself to all of this. Please consider LTC for your dear Mom. At ALF and other places they have whole teams involved solely in trying to keep the elders entertained with art and games. You cannot do it all. You are not a Saint, but a human being with limitations and with a right to a life. Only you can make these decisions, and they are among the most difficult and wrenching you will ever make in your life. I am so sorry.
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Reply to AlvaDeer
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Oh gosh, I think many people feel as you do. I felt that my mom was lonely. I became lonely too as a primary caregiver. It certainly is exhausting caring for an elderly parent. Do you have any outside help so you can rest?

You are doing all you can. Most primary caregivers are stretched to their limits. It is important to care for your needs as well. Call Council on Aging for an assessment to see if you can get some outside help.
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Reply to NeedHelpWithMom
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My mother also has advanced dementia and grasps for things in the air. I don't think she knows exactly who I am, she isn't verbal. I'm never sure what's going through her mind, but I want her to be comfortable, clean and fed. She's in a memory care facility and I visit her as often as I can. You are already doing a lot. It's OK for you to just sit quietly with her and rest while she also dozes off. Just make sure she is in a safe place where she won't fall. When my mother grasped for things she often leaned forward and a couple of times she fell out of her wheel chair. Now the aides in her facility put her in a geri chair which can be tilted back, so she won't fall out of the chair. Play music, if that soothes her. Take some time for yourself. Try to get help to come in and give you breaks. Also take care of yourself.
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Reply to NancyIS
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I read your previous posts, trying to discern why you would feel guilty.

I read that your Golden Boy brother bailed on your parents, so you were left to do 24/7/365 caregiving? And that you weren't treated right growing up by your mentally ill mother?

What was the caregiving situation before your brother became estranged? Did your mother live with him? Did he help?

How many years has your mother been living with you?

What is her financial situation? Can she afford a facility? Is she Medicaid-eligible? Are you getting any kind of compensation from her?

If she has assets, I certainly hope she hasn't left it all for the Golden Boy, and that you are doing caregiving so that money/assets will be left only to him?
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Reply to CTTN55
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BernerMom May 27, 2021
She has no assets yet with her pension falls just short of qualifying for Medicaid. She and Dad lives across the street from my brother, who is now "of no fixed abode." I moved both parents in with me 18 months ago. Mom was sectioned early on and spent 4 months in the state psychiatric facility. We didn't expect her to come home. She became better so I moved her to a NH briefly before discovering they were not set up for MC and had no medical staff. Pulled her out before COVID hit.
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