When to stop ?

Approximately, what stage is he in? Can you modify some things so he can still assist. My mother progressed slowly for a long time. I tried to keep her as involved as possible for as long as possible. I would modify tasks as needed as she progressed allowing her to do what she was capable of. Now she is pretty much past the point of being able to do anything meaningful, so instead of participating, I keep her with me so she can see and I talk to her about what's going on.

If he is getting agitated, it is not worth continuing. You can try modifying or, if he is now past that point, stop. A day program as M1 mentioned could be a good way to keep him engaged and provide some socialization.

The key is to find failure-free activities on his level. There is a book by that name. PWD have trouble making decisions and initiating activities, so you will have to start him off, perhaps even stand by. Perhaps hire a companion/"friend" for a few hours? Or adult day care center?

Iris

I feel like this advice comes for a place of the medical community having very little to offer to PWD and those who care for them.

IME, success in this enterprise is going to be very dependent on the personality and presentation of dementia. With my dad, we were up against both apathy and his baked-in notion of most tasks being women’s work and beneath his dignity. This left him fretful and bored.

My friend’s mom was used to being busy. She would fuss about the kitchen wiping or sweeping and she would knit in the evenings until the later stages. After she went to bed, friend would unravel her work so she could knit some more the next day.

My aunt enjoyed the activities and outings at her MCF. Prior to his death, her husband encouraged her to do the crossword to exercise her brain. After she went to MC, we cleaned out her home and found years of puzzles in various states of completion. She has a 12’ long closet filled top to bottom with grocery sacks filled with cut-out NYT crosswords. Those in the back were mostly done, at the bottom of the front row they were partially finished and the ones on top were empty. Some of the empty ones were just grids without clues. So much for exercising the brain.

If you can find a day program or companion to entertain him, great. But don’t feel you’ve failed in some way if you can’t make it happen.

HB

So many great comments. I have wrestled with this same question for some time now. I'm still trying to be cruise director and captain both, but not because I necessarily believe that keeping DH engaged slows the decline. It's more so to distract him from the things he obsesses about when he has nothing to do. I try to do the things he suggests doing or try to make suggestions to see if he's interested. I'm getting used to the constant shadowing and tell him "I'm going into the garage" or "I'm going to put my shoes away" instead of just going out of the room and have him come look for me. He will usually follow me now. And lately he asks me what I'm doing - for instance, if I'm looking up something on my phone. So instead of blowing it off, I answer him and I think he appreciates that. We do whatever works!

@ImMaggieMae , that’s so funny. My DH likes Gilligan’s Island, too. It is one of the few shows that interests him!

So much of this thread hits home. Seven years into this horror since her MCI diagnosis. Latest assessment (by myself and the caregiver) suggests she is now in stage 6. She has sundowning symptoms that begin in the early afternoon, well before sundown. That was one of my first clues that most doctors and others really do not know the realities of this condition. Because it started so early in the day, it could not be sundown symptoms. Of course they could provide no better explanation. Doctors, family, friends know what they read or hear from the "experts" and much of it is so misleading. My wife represents bits and pieces of every article, book, consultation, etc. I have ever found, and I have researched it quite a lot, just like most here have. I understand that what is published as research data is but an average of all the experiences observed. This forum has proven to be the most reliable source of information. I have encouraged my family to register and take the time to read examples of the threads here if they really want to know what this life is all about. I especially encourage my children to so so as I suspect they will be burdened at some point with providing the care for their mother. I do not want them to be shocked at the reality of her life or think I have in some way tried to mislead or shield them from the truth. I find that most others do not want to hear the truth. Reminds me of the Jack Nicholson statement in the movie. Finding others who are or have lived this horror with whom to talk is difficult but I have found it is only those who can have meaningful conversation, not just about the disease but life in general. Thus, this forum becomes a lifeline. The care giver and myself have tried so many ways to get my wife engaged into any activity to help with out success. As the evening advances each day, she begins to ask "what are we going to do today?" When I ask what she would like, she is unable to offer any ideas and becomes angry at me for not having plans. When I have tried to take her with me to the grocery store or even to a restaurant, each attempt has met with failure. Either she begins to panic to get back home in the middle of shopping or as we approach the restaurant, she insists she cannot eat because "she now does not feel well" and needs to go home. The caregiver is very helpful for the 4 hours a day she comes 3 or 4 days a week. But, even there, after about 3 hours or so, my wife begins to become much less engaged. So, each day is a surprise, and not usually a good one. But then, as evening advances, she gets tired, must sit close to me and hold my hand or arm and profess how much she loves me, how much I do for her and begs me to not leave her alone and my heart breaks and my guilt overwhelms me as i recall those times today when I could barely control my emotions in a bad outburst. And so it goes.