She sits staring blankly or sleeping unless I entertain her with picture books. She won't read, play piano, X-words. Do I need to keep her entertained by MAKING her look at picture books, taking her for walks, looking for what is different between 2 similar pictures, make her play hymns on piano etc etc or is there no benefit in forcing her to stay entertained? She never argues about doing the activities but I am doing all the work and entertaining because I feel guilty letting her just doze in the chair all day after sleeping 12-14 hours all night. She sleeps 8pm until 10:30 AM and I have to wake her up to eat breakfast. She is ready to go back to bed at 1:30 and sleeps all afternoon until I wake her up for supper at 6pm. If I constantly keep her entertained by taking her outside for walks in the wheelchair, doing her PT exercises with cans of soup and getting in and out of the chair without using arms, and marching around the house, or looking at books, she will stay awake, but I can't tell if she enjoys it or would rather I just leave her alone and let her sleep. Is there any real BENEFIT to keeping a 98-year-old with moderately severe Alzheimer's entertained? It takes a lot of my time and is emotionally exhausting when she won't remember 5 minutes later that I did anything with her. I do the PT and walking so she won't lose her ability to walk around the house and help me get her out of the bathtub.
Please do some online research and discuss with her doctor.
We none of us live forever, and to have reached 98 years is really quite remarkable. Kudos out to you both.
I think it may be time now to discuss best measures for end stage comfort care with your mother's doctor. You may want to consider options for palliative and hospice care.
Remember, the goal now is comfort until your mom reaches her end as peacefully, and with as much comfort as can be provided.
Sounds you have done a remarkable job of care for your loved one.
When I come to visit my 96 y/o father at the NH he is in the common area in his wheelchair and he is usually sleeping. I wake him up and wheel him into the sitting area and my husband and I sit there and talk at him for a half hour. I don't think he cares if we're there or not anymore. I just visit to make sure things he is getting the care he needs.
He is not interested in social engagement or entertainment anymore and I certainly am not going to pull rabbits out of my hat to even try. I am just waiting for something to take him finally. It can't be soon enough for his sake and mine.
https://www.loc.gov/nls/
NLS at the Library of Congress - National Library Service for the Blind and Print Disabled (NLS) | Library of Congress
It's very easy to sign up and they will send you a special tape player and several tapes with 6 books on each tape, all for free.
Once it's setup there's basically just one big green button to operate that starts and stops the reading of the books. You can select any book titles, authors or genre. Just contact the office that services your area,
If I were in her condition at her age, I'd want to be left alone to dream or vegetate if that's what my brain and body are telling me what to do!
Seriously, about that guilt - why? She's very lucky to have you helping her. Feel proud of yourself for keeping her going as long as you have.
You may think she is "just" sleeping but her body is doing a lot of work that can tire her out.
The body autonomic nervous system is hard at work.
Heart rate, digestion, respiratory rate, eye response, Urination.
My Husband went from sleeping a "normal" 8 hours at night to sleeping the 8 hours but "napping" off and on so he was sleeping 10 to 12 hours that went to 16 to 18 then the last year he slept about 20 hours, the last month or so he was sleeping 23 to 24 hours, would barely wake when I changed him, ate and drank very little then ate or drank nothing.
It is part of the process as the body dies.
When she stops eating, do not force her to eat, offer but don't push. Same with fluids. (You might have to thicken fluids so she does not aspirate.)
Her body does not feel hunger like yours or mine. Her body will not process food or fluids.
If you do not have Hospice helping you it might be worth a call to see if she qualifies and get the help they can offer. (help and supplies would be provided. A nurse 1 time a week, a CNA to give her a bath or shower 2 times a week and all supplies medical and personal will be delivered to you)
A lot of times they just want to rest and sleep...leave them be. Their body is wearing out.
Just sit and put your hand on them or hold their hand so they won't feel alone.
Isn't that what we all want!
Happy New Year!
Ireland
People with dementia lose many skills and abilities, like being able to initiate activities to entertain herself, but they can still feel and sense the emotions of others by their tone of voice, facial expression, touch, etc.
So, mom may be enjoying these activities up to whatever point she thinks you are enjoying them. Otherwise, if she senses you are resentful or stressed, she may just be going along with it in an effort to please you.
She should not be put in a bathtub for bathing and lifted out either! Instead of taking these superhuman efforts you're taking in vain, please call her doctor for a hospice evaluation. A CNA will come into the home to bathe mom 2x a week and an RN once a week to monitor her in general and adjust meds, etc. She'll be given a hospital bed and supplies she needs for free as well. This will relieve you of some exhausting duty and help mom rest and relax. She's passed the point of needing entertainment now.
This is all very hard to digest, I know. But it's great that mom has lived such a long life and had YOU giving her such remarkable care! It's time now to cut yourself a break, too.
Wishing you the best of luck with a difficult situation.
You don't need to be an entertainments director for your mum. You need to be there for her and you can't if you wear yourself out.
Take your mum out in the wheelchair only when you feel that it's something you want to do. Although your mum might be stimulated and amused for a moment, she won't retain that feeling. So, if you do it, do it for yourself.
Don't push your mum to do anything, especially if it's physically or emotionally wearing for you. There is no real benefit to be had for your mum, now, however entertained she might appear to be in that instance. Yet, it could be detrimental to you. Therefore, when weighed up, those activities you organise could result in a net loss for you, rather than a gain for your mum.
Your mum needs to sleep. Her body and her brain are winding down. It takes a lot of energy to be receptive and engaged, so you really don't need to entertain your mum.
By the way, I went through a similar feeling of angst and guilt when I had to step back from trying to engage my mum. I felt so guilty just letting her sleep, especially when I felt that I was leaving her to her own devices as much because I was exhausted as because I was finding it hard to keep Mum awake.
That guilt is unearned. You've done nothing wrong. It's just time to accept the inevitable.
I hope that you get to continue having precious moments with your mum, however small, and that she remains a sweet lady until the last. My mum did, and I realise how fortunate and privileged I am.
She has advanced dementia. She’s a cancer survivor at 94 and 95. I kept her home and she was actually in in-home hospice last year this time. I just placed her in a memory care facility near my home because I could not do it any longer too many UTIs, hospitalizations ER visit and fall this past year
The memory care lets her sleep and nap however, they also her to do activities which she enjoys. I feel incredibly guilty and I grieve the loss of my mom as you know dementia is such a slow good bye. The pain is excruciating and the stress will eat you alive. when my doctor told me at my annual three weeks ago, I needed high blood pressure meds and anxiety med. I knew that was it. I couldn’t do it any longer. Please get hospice involved. They were my lifesaver and I got some respite care and information that I needed for next steps. You are a very devoted daughter never doubt that.
I understand there are then resources to help shower, etc. after that.
But then the simple task of getting up and using the restroom becomes a new task for daughter right?
I have a similar situation so I want to plan ahead as things change.
Thank you!!!
I'm very small and have a bad back, but even I learned how to safely move mum from the bed to the commode while she was hooked up to a syringe driver, and back again. It should have been a 2 person job at that point in Mum's care needs, and I only did it on my own once. But it is definitely possible when the LO has some limited mobility and capacity to follow instructions.
however, I remember caregiving my late husband who suffered a TBI with followup surgery, and did not " come out of it" for 8 weeks.
i wore myself out back and forth to the ICU daily and at night.
mercifully he "woke up", then transferred to rehab. Regained speech after weeks there.
that's when I learned he thought he had "been sick a couple days".
the brain takes so much energy keeping alive. it's certainly possible your mother just doesn't know or care about stimulation.
We look and say "she's bored" because we, healthy, would be bored.
Her brain is likely exhausted. It takes a lot of work to process any stimuli.
All your efforts to entertain her may ironically be tiring her brain.
It's ok to let her sleep a lot. Reading, doing crosswords and playing piano are probably much too difficult for her.
Try giving her easy tasks, such as folding the kitchen towels, instead of you being the entertainer. Something easy and pleasant for her to do will keep her mind and body active. Make sure it's an activity that doesn't require any thinking. Instead of making her play hymns on the piano, try playing some music for her that she enjoys. And that doesn't mean you need to sit down at the piano and play for her. Play music on a device. Try playing animated movies for her. Something with a nice, simple story, not too scary or difficult to follow.
My husband used to like to watch Balto, Alpha and Omega, Kung Fu Panda - they are all adventure stories with animals as the main characters. Molly of Denali is another nice, short, animated story on PBS that he liked.
Why are you "making" her do so much? Sounds like you are hovering and constantly pushing her to do something. You say she is "agreeable".
This is something I know a little about. I am the "agreeable" one. I have several family members who are pushy, demanding, and frankly, exhausting.
She is agreeable because it is easier than trying to defend herself in an argument with you. Or to ask for something that You did not plan. Stop hovering. Just enjoy her while you can. Relax. You can not fix her disease, and you will eventually lose her. Try and share some nostalgic memories with her. She may not remember, but she will still enjoy hearing about it.
I'm sorry you are losing her. I have a feeling you are doing all this in an effort to fight off the inevitable. Rather than exhausting yourself, give yourselves both a break, let her rest, and you find someone - a therapist, or a trusted friend, to talk with about your grief.
Next, consider what is reasonable given her abilities and your stamina/energy. PT - walks, moving things, changing positions - every couple of hours when she should be awake will keep her muscles from atrophying, her joints supple, and her skin intact. "Helping" with meals: setting table, clearing dishes, making salad, mixing meatloaf or batter/dough can be engaging enough without taxing her limited abilities. Ask her to dust or fold laundry - even if you need to follow up later and do it yourself.
I know that some people stay active at that age, but they're the exceptions. Also, I'd agree if the mum was showing signs of boredom or that she had years left. However, this particular mum is constantly tired - her body and mind have both slowed down - and so it's likely that she won't live very long.
She needs to be made comfortable.