My elderly LO with moderate dementia is very dependent on me as a live-in caregiver. I try to encourage independence but it seems that if I don't do it....then it simply doesn't get done. He will skip eating or eat a piece of bread, rather than warm a plate in the microwave. He will let things pile up (newspapers, mail, dirty dishes) rather than take care of anything. He will topple clean clothes onto the floor and not pick them up. He steps out of dirty clothes and leaves them on the floor. He refuses showers, doesn't take his meds even if I leave them in plain sight with a glass of water. He's very messy. He is still basically conversational, and knows the main family members (no longer knows extended family). His worst dementia symptoms are of course in the evening. He worries a lot about current events and has been exhibiting some OCD tendencies (frequent hand washing and door locking). He seems to have some delusions but is mild mannered and content to sit in front of the TV every waking minute. I can no longer differentiate between cognitive decline, possible depression, or me enabling helplessness. I'm drowning and he refuses outside help (says it's not necessary). I've been living with him for 4 years and I don't have another 4 years in me. Is this just the course of aging or am I creating helplessness??? Not doing things for him does NOT lead to more independence.
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.
Watch this video to get a sense of what's happening in his head -- https://youtu.be/LL_Gq7Shc-Y
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.
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.
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.
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 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.
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.
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.
See All Answers