When to stop ?

JC5

Doctor says “Keep him active, mentally and socially. Keep him involved etc.” Well I’ve been doing this . Writing to do lists ( 2-3 things), trying to have conversations with him, asking for his advice opinion help. But now he gets annoyed when I ask him to do something or says I will and doesn’t do it. Then he complains he is bored. In the meantime I’m running around doing it all! Think it’s time to stop expecting his help. I know the movement and activity would be good for him but he just doesn’t want to do it or just can’t process it. I hate this !

M1

I'd let it go JC5. It's just theory. I've said in other threads: you can't be the cruise director and the captain of the ship. Being the captain is the more important job. Is a day program a possibility? It wouldn't have been for my partner. As she progressed, she spent most of her time vacuuming repeatedly (that was harmless) and going through old papers at her desk (not so harmless as she would pay old bills and write checks to animal charities, which i tore up). Then she would overfeed our animals. There's just no way to keep someone with dementia entertained continuously. Makes me want to ask the doctor who told you that to come and entertain him. These people have no idea….

​fesk

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.

Dio

Yes, there comes a time you just have to let go. I don't think any expert has a turnkey solution for every PWD.

Iris L.

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

tucson anne

At some point they can't do much of anything. My DH tries to unload the silverware from the dishwasher but puts it in the wrong spot (I don't correct); he can still hang out laundry but sorting? No way. Very specific yard work (rake right there, put it in that trash can) but I'm the overseer. It entertains briefly but doesn't help me. Most of the time, there is nothing for him to do. And there's no day program despite a metro area of over a million…Plus he doesn't do crafts anyway (tried that at one activity designed for people with Alzheimers. I'm just waiting for him to get to the point where he just stares into space all the time…

Crkddy

When trying to do these things become the source of frustration for you and him, it is probably time to stop. Don't worry too much about trying to keep him entertained. Peace and calm are a blessing that you will appreciate more and more. No need to create agitation, regardless of the good intentions.

AnderK

After putting a load of his laundry in front of him to fold, and it stayed there for 24 hours, I have given up. Yesterday in one of the more lucid moments of a terrible day, he said I like being bored. Don't know if that is funny or sad. I went and did needlepoint.

Kathy

harshedbuzz

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

Denise1847

Hi JC1,

Definitely give up being the cruise director. I tried to keep my DH entertained to the point of frustration because he didn't want to participate and wouldn't go to day care. He either sits in front of the TV (not sure what he absorbs) or sits on our porch looking out at the creek and wildlife. He is at peace and that is what is important. It also is less stressful for me constantly failing at entertaining him.

Quilting brings calm

I agree with HB. The doctor told you that because the common ‘wisdom’ is that engaging in activities will both prevent the disease and slow down the decline. There’s no proof that it slows down the decline. Especially once they are no longer able to 1) complete the task, 2) no longer enjoy doing the task and 3) become frustrated at attempting to do the task.

I’d stop at this point other that to make offers such as ‘ I’ve got the clean laundry on the couch - do you have time to fold it? Don’t more than once and don't present multiple options at one time.

I sense that the other part of your frustration is that you’ve reached the stage where you are doing it all. Unfortunately yes, you have. Give up what you can. Hire a lawn guy to mow. Find a good handyman to make repairs. Order groceries on line to either pick up or have delivered. Also give up on the idea that he can help out. He can’t.

JoseyWales

Agree with the others - stop trying to be the activity director. As my DH declined, we just did what he was interested in and I followed. We walked (oh my, did we walk. So much walking.) He collected rocks. At first it was just pretty rocks he saw as we walked, later it was rocks anywhere from baseball to basketball size. We live across from acres and acres of farm field. There are tons of rocks around my house that he collected. But it kept him busy.
Later, as his decline continued, it was sweeping. He'd go out and sweep off our driveway and porch for hours.

annie51

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!

JudyVE

I agree with the person who said you can’t be the Cruise Director and also be the Captain of the ship! It’s exhausting. You are already running a household on your own where formerly you had a partner. I am fortunate to have LTC insurance, and am able to have home care aides come to my home. So far I do this about 16 hours a week and am planning to increase that in the fall. I leave ideas for the aides re: things that might engage my DH: jigsaw puzzles (he pretty much just watches). Magazines (National geographic with lots of great photos. He no longer reads). Walks, birdwatching in our yard. Music. Podcasts. And finally, TV. I say finally, b/c the TV was never on in our house until evening news (except for weekend golf ). Sports preferably, but he has a favorite sitcom that he loves, and we have seen ALL the episodes many times. He can help me with really simple tasks, but needs close supervision, so it’s not “helpful”. My DH has become increasingly unsteady on his feet so asking him to help carry shopping bags or laundry or anything else is just not safe. So, my advice to you JC5 is - let it go. If you can, get others to help fill the “cruise director” position for a few hours a week. Good Luck.

AnderK

I love the stop being a cruise director!! The response that lurks in the back of my throat is : OK doc, when do you want to stop over and help me get my 180# partner out of his chair to keep active. Would that be the same time you come on over so that I take time/ care for myself? Or should I learn how to multitask even more so that I can pay bills, do the laundry, empty the dishwasher, see if I can find some daytime help and get him to do the exercises he refuses to fo all at the same time?

Sorry for the rant. I know they, and others mean well, but walk a mile in my shoes. Ooops, can't find' em. They got put away in a rush because they could be a tripping hazard. Sigh.

Kathy

tigersmom

Clueless comments like this from the medical profession make me want to smack them upside the head, as we used to say where I grew up. I am astonished at how little most doctors know about dementia. I feel for all of us. We are all stretched to the max, and advice like this does not help.

AnderK

https://alzconnected.org/discussion/comment/215419#Comment_215419

Your comment about a smack upside the head reminds me of the next part…and down the other. It was never done to me or my siblings, but being an NCIS fan, I call it a Gibbs. 😀

Kathy

ImMaggieMae

https://alzconnected.org/discussion/comment/215419#Comment_215419

Yep. I think they advise these types of things because they don’t know what else to say. Some are truly clueless. We had a geriatric PCP early on who advised tapering off the Risperidone that a hospital psychiatrist put him on and use aromatherapy instead. She also told me to always make sure I had a smile on my face when I was around him. This was in the stage where he was repeating the same questions every 2 minutes or so for hours and hours and I was ready to go stark raving mad! It got even worse as the Risperidone was reduced. Needless to say we went back to the hospital psychiatrist’s advice with medication. We did the things he liked to do, like go for rides with me, some walking, and watching Gilligan’s Island on tv so many times that I almost know the script of the whole series by heart!

tigersmom

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

LaneyG

I’ll have to try Gillian’s island. DH seems to have no interest in tv anymore. I’d love I give up the cruise director role as it is exhausting.if I don’t entertain or bring him places, he latches on to his laptop which he no longer knows how to use and I need to click around for him. He obsesses about it and seems to think it’s some job he’s getting evaluated on. When I don’t help him he wanders around repeating “I can’t do anything” or “ I have to do something” then he gets sad and says he prefers to die. Breaks my heart. He offers to help me constantly. I always have to redo what he does. Our house is a mess all of the time cuz I have no time to straighten out. But i prefer getting him to the senior center or other community events. We at least see people and get a change of scenery. My biggest challenge is to find a way to get some respite. He won’t leave my side.

Stan2

The medicos can only give the advice that they have been taught. I don't think anybody can truly understand what is involved for a 24/7 caregiver unless they have been in that situation. Even my daughter, who visits almost daily and continually asks how she can help, doesn't truly understand the sense of responsibility and isolation that are involved in just the most simple acts of daily life with a LO affected by this disorder. She is constantly talking about going to chair yoga or balance exercises or walking. She can't grasp that just getting up, taking meds, washing and dressing can take until noon.

CindyBum

I'm a little late to this one, but wanted to add my two cents.

I think it's perfectly reasonable in the early stages to think about ways to get your LO a little more active. My DW and I were able to take daily walks for years and it was lovely. Now that things have progressed for her, the better advice, in my opinion, is to enter their world and follow their lead. She sometimes wants to go on drives with me…great. Let's go. She sometimes wants to take a walk…great. We spontaneously went to the movies yesterday because she saw a movie advertised she was interested in. Mostly, she wants to watch tv now. Fine. I might get her to dance to her favorite song now and again, but I'm not pushing anything on her anymore. I'm perfectly ok with that.

When she's further along and really can't decide, I might pick up on deciding activities for her and pushing her a bit, but I doubt it. Why take on that additional difficulty and likely annoyance. There's more than enough of that to go around.

howhale

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.

Iris L.

PWD on the outside may appear to be the same, but they actually are ill and declining. Suggestions:

1. Avoid asking questions. PWDs don't have answers. They can't answer questions.
2. Limit outings to two hours or even much less. PWDs tire easily.

Iris