How to tell the difference between what a dementia patient can't do vs. what they just won't do?

Beatty,
What you describe about the lady who could not get out of her chair, but 30 minutes later could walk...
That is exactly like Parkinson's when they freeze up, then amazingly are walking down the street in their walker at age 90!
Not faking.

I think it can be really hard to disentangle depression, from dementia from learned helplessness. Can it be a little bit of all of those perhaps? And what difference would it make? My mom has mild to moderate dementia and also does very little. She began doing less and less over the past 5-6 years. I do sometimes wonder whether it's because she can't or won't, and whether she just likes the sense of power that she may get from having me do almost everything for her. Could you be focusing on trying to figure out these differences rather than feeling the pain and tragedy of your situation?

I sometimes get furious at mom for not doing anything, but then I catch myself and remind myself that most likely she does nothing because everything is difficult for her now. As another poster pointed out, initiative if often impacted by dementia, so he may want to do these things that you want him to do but he just can't. My mom has not filed any of her incoming mail since 2018. She still talks about doing it from time to time, but I know she never will. She doesn't get her own breakfast, doesn't make any food for herself, has stopped setting the table and washing the dishes (these two were her chores when dad was still alive), and actually does very little other than play one card game on her cell phone, watch television (usually the same show), eat and sleep.

I've been caring for my mom for 2 years and it has not been 24/7 for all that time. I can't even imagine doing it 24/7 for four years ... If you have funds available definitely get someone for a few hours a day to help out ... he doesn't need to approve it. Do it for yourself if at all possible, otherwise you will burn out completely and he will have no one.

I met a lady that just could NOT stand from her chair. No strength, no will, no trying, no understanding.

30 mins later up walking around her room.

So physically she could do it. But only SOMETIMES. Initiative? Comprehension? Don't know.

That's the thing. To me it's like dodgy wifi, just goes offline sometimes.

Need to get more helpers.

Ignore the no no nos. The help is for YOU - so it is up to YOU.

My husband who always did everything before diagnosis of Parkinson and subsequent hip fracture, no dementia or depression, but simply sadness, lost of strength, back pain and so on, being on meds makes him sleepy, so I let it go, sort of, because everything he does takes forever. But there is some learned helplessness, which is real and can be reversed, sometimes it is easier to do it myself.
What bothers me that he forgoes some of his favourite things, but reads books, does crosswords, beats me at chess and cards. But realistically, physically there will be some more limitations with PD and dementia is common with Parkinson.
I would say to original poster, it is up to us caregivers to arrange for extra help, we cannot do it all, or change somebody with limitations or declining mental capacity. I learned after year and half I won’t be able to do it 7-10 years and I am strong and hardly over 60.
I get respite care, arrangements are being made for my husband to go to PD program starting once per week and maybe go 3 times a week, I already inquired about help for 12-14 hours a day, which maybe I will need soon or in a year.

I don’t think anyone can truly distinguish can’t from won’t. Dementia is bizarre and inconsistent and, just when you’re coping with a change, there’s another change.

My mother stopped feeding herself and drinking. Complete helplessness. IV fluids, spoon-fed. Could not be coaxed to do anything for herself. We noticed precision in her hand gestures (like C. Montgomery Burns “Excellent!”) so I asked why she no longer fed herself. She claimed nobody told her to so she just stopped. I told her to feed herself. So she did. She has to be reminded at every single meal and snack time.

She stopped moving except her hands and arms. Had to be repositioned, rolled, etc. Physio could not coax her to move. Two months of that, then she climbed out of bed and walked. Staff was stunned.

Stopped talking for weeks. Now she’s hit and miss with conversations.

Hospital admission. Tests to check for medical issues throughout the process. Transferred to hospital palliative care. Talked, ate, drank. Discharged from hospital palliative care.

Exhausting and exasperating.

Initiative is one of the brain functions that is no longer possible with dementia.

Many caregivers can even see this as their loved one being “lazy”.

Just as we wouldn’t ask a blind person to just try harder to see, we can’t ask a person living with dementia to have initiative.

It is often advised to give the something to do. Today asked my LO to water the plants on the porch which he’s taken pride in for years. It confused him, he doesn’t know which plants I mean or how much water to give them. I had to supervise the whole job which takes 5 minutes. It took 15. I asked him to put the mail in our home mailbox for the mailman to pick up. He didn’t know how or where the mailbox is. It’s at the end of our short driveway in a brick pillar. They get overwhelmed at the slightest suggestion sometimes. Assuming they want to help is not good when they no longer have an idea what helping is or what a mailbox is. They stop
midtask and wander off or forget the way to do it. It is so sad. Then it’s difficult to get them settled in a chair again to watch tv or eat. Professionals handle these things best and sometimes you just have to turn it over to them.

For a person with dementia many of the things that you mentioned can be overwhelming.
The "simple" task of going through mail is daunting. (I have to tell you sometimes my mail piles up as well, and I may leave a dish on the table by the couch)
The "simple" task of heating a plate in the microwave..
You have to put the plate in the microwave
You have to press the right button. I don't know about your microwave but mine has 30 potential spots to push. Some will start the microwave and you could get a time anywhere from 30 seconds to 6 minutes. If the microwave does not start and you push another button you could be adding time, or stopping the process, or worst the dang thing beeps at you and then you have to figure out why.
Not so simple.
Dementia is not simple
Dementia is not him not wanting to do something.
Dementia is not him trying to be helpless
Dementia is not him trying to make you angry, frustrated.
He does need cues as to what to do.
there are some people that do well as careGIVERS
there are some people that do better as careMANAGERS.
maybe you are the latter.
As a caregiver you realize that it is YOU that needs help caring for him. It is not a matter of what he wants but what you need to care for your LO safely.
If you can not do this then placing him in Memory Care is the right thing to do for his safety as well as yours. It is not giving up or that you do not love this person it is admitting that his care is beyond what you can do at home.

Cognitive deficit, mood changes and bizarre behavior are parts of dementia. Most people only focus on lack of memory but forget about the other features.

Sometimes we caretakers need to bite the bullet and accept what we cannot change and realize that this behavior will not get any better, only worse.

I would suggest that you start your search to place him in memory care, they are trained to handle people with dementia.

You are young, don't give up your life for another, there is no reason to do so. Caretaking is an all consuming job, with no real benefits.

You need to educate yourself on dementia so that you can engage with him more productively and have right expectations. Dementia means he is losing abilities little by little and there's not clear delineation as to when or which or why.

Are you the PoA for this LO? Are you being compensated? Are you expected to provide ALL his care (which means you work 24/7/365)? This is not sustainable. If this person has no PoA this may be a big problem going forward.

Also, please control what he is watching on tv or online: distressing news or shows can create a lot of fear in his mind that seems very real, and then he is not really able to deal with it since he's losing his logic and reasoning. He may need meds for his anxiety (manifested in his OCD behavior). We only allow my aunt with dementia to watch Disney or Pixar animated movies with little to no violence or stress in them.

You can have him do "purposeful" activities, like folding a large basket of kitchen towels (not real laundry, but purchased just for him to do, even more than once a day since he won't remember); he can also match and pair colorful socks. Getting him outside to go for a walk around the block or pedaling on an exercise bike -- all of this will help burn mental and physical energy which will help ensure he sleeps at night.

But in the long run your situation isn't sustainable so you need to make some decisions in order to protect yourself from burnout. Kudos for doing what you've done to date, but his ongoing care will need a new strategy that doesn't involve you as the solution.

He needs to be in memory care. Don't make assumptions that he's merely lazy. These things are not intentional.

Watch this video to get a sense of what's happening in his head -- https://youtu.be/LL_Gq7Shc-Y