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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?

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No, not daft at all.

I've found when I ask many elderly folk if they want music, tv, chat or peace & quiet they often choose peace & quiet. I think it's a wonderful thing that gets underrated in our busy rushing modern world.

My link below may not work.. but Teepa Snow has some great ideas for all stages of Dementia. The ones on very advanced, 'Pearl' stage as she calls it are very caring & enlightening.

https://youtu.be/VAwUNZi0RQ8
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Beleven me she deffiently gets more entertainment from you in one day than she probably would in a Nursing Home in a month
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I know exactly what you mean! I am taking care of my 84 year old in the earlier stage of dementia and I recently moved into the house next door. There are a lot of times when I will give her some “busy” work and go back home to get things done or just to take a break
and that’s ok ! You can’t entertain her 24/7 I felt guilty at first, too but guilt is such a useless emotion. You’re doing GREAT!
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Please do not, for a minute, feel that you should be doing more for/withyour Mom. What mother would not love to have special quiet time with her daughter or son holding her hand in peace and quiet. Holding a patients hand is so comforting. Even if she is not aware of who you are, the warmth of your hand from your heart beat passes onto her. My Mother said to me, when she no longer knew me, “I don’t know why, but I have loved you from the first day I met you.” She knows your love, comfort and caring for her. If her mind would be working correctly right now, I am sure she would be comforting you and telling you to slow down, sit down and take a deep breath, and would be holding your hand. Keep the soft soothing music playing in the background and consider this is the special quiet time together. Make time for it everyday as often as you can. A gift to both of you from each of you. That special time you will never forget.
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Imho, as I had to live out of state caring for my mother in her own home, that alone was exhausting enough. I had a cousin who visited with his wife and he said to me "You should be taking your mother on trips." My response "That's not my goal. I am here simply to provide care for my elderly mother, who is nearing EOL. I am not the entertainment committee." In addition, much of the time my mother was sleeping during what used to be wakeful/daytime hours. Do NOT feel guilty.
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My mother kindly asked me if I would mind if she we didn't try to converse as it was difficult for her to breathe. We just sat together. That was enough.
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Do not do that . Everyday is a great day for them to just be with there loved ones . It s like a baby if you do that it will be a boring day the day you don't do that . Your puting to much on yourself . Just them living with loved ones is enough . Being cared for by loved ones is enough. Your doing good. Just keep the bills paid. God bless you .
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Same here! I do feel sad that she doesn’t have an active lifestyle like she used to. But she’s safe, clean, well-fed, and content. I’m exhausted as sole caregiver so I can’t entertain her all the time. She does have baby dolls (they look like real babies) sitting at the table with her and they keep her occupied. She also has several fidget blankets to keep her fingers busy. If it really bothers you, you can always look into hiring a companion. These are people who are paid to keep your loved one occupied—whether in conversations, board games, walks, or whatever they enjoy. It also gives you a bit of respite care.
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I have the same problem with my 88 year old Dad. I feel so guilty, but then again I am TIRED AND BURNTOUT! I thank God that he is still mobile and moving around and is still very active. I also gives him things to do and we take walks around the neighborhood or go sit out by the water and that guilt is real! I will find myself sometimes just sitting with him and watching his TV programs or working one of his crossword puzzles with him out of guilt. Caregiving is so hard especially if you are close to your parent. I want help but I feel even guilty about that...:( I TOTALLY get where you are coming from! Make sure you pray and read your Bible, that's how I get through this and I'm also in therapy.
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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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Don't feel guilty. She was fine and you were fine. I have a feeling you are trying to fill her time with meaningful activities. Let your kindness always be in thoughtful gestures of love. Just make sure not to wear yourself out while being loving and kind.
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As Grandma suggests, have her entertain herself. There's no harm in just sitting quietly. In fact, it's better than trying to constantly entertain her, that's exhausting. Do you regularly entertain your mom for her benefit, or to reduce the feeling of guilt in not attending to her? Does she still have the faculties to enjoy the things you share with her? While still caring for my wife at home, I often wished that someone would entertain ME! Caregiving is a difficult, time consuming, unappreciated experience we all need a break from. Can you find some music of her generation on your cellphone or even the radio? Music that they remember can be a great soother. Allow her to occupy herself and tend to your own needs.
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More than anything, the elderly want and need companionship. Do things with her that she enjoys, but also let her rest, listen to music or TV on her own. As long as you are nearby, it probably is fine for her.
You need small respites throughout the day for yourself to recharge and fend off fatigue & emotional feelings such as resentment. It sounds like you are a gem. If at all possible, hire someone to step in for a few hours each week. The change will be refreshing for both of you.
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What you are doing is wonderful! You will never regret leaving the dishes and the laundry to spend some time together.

Make sure you are taking care of yourself too. Make sure you have the down time you need. Caretaking is a challenging job.
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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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BernerMom May 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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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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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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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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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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B
BernerMom May 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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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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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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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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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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