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She has dementia, and fiddles with everything. I tell her we have to leave 1 hour before we do, and were still late. It causes a lot of stress. She is so easily distracted, that she constantly moves from one thing to the next, and forgets what she is doing. I have tried everything!!! No matter what I do, we end up arguing. It is very stressful for both of us. She has been living with us for 18+ years.

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18+ years...WoW! Have you considered moving her into AL, so that you can get on with your life? Otherwise, I have no ideas, she will not get better....only worse...not my rules, just how it works.
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If you are going to try to keep her at home, you need to sit with her and get her dressed on step at a time; here are your panties. Here is your bra. Here are your pants, etc.

Do this in a place where there is nothing to fiddle with.
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dedicatedtomom Aug 2019
Thank you, Barb. You are right!
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I'm sorry, I know it takes some getting used to, but you really can't expect a person with dementia to plan an hour ahead and keep on schedule. It just won't happen. If you have to be somewhere, figure out how much time it will take to be ready, double it, prompt your mother step by step as BB explains, and then you have a fair chance of being out of the door when you need to go.

Unless your mother then announces that she needs the loo/is going to be sick/didn't want to see her friend anyway, of course.
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I'm sorry but it appears that her condition has deteriorated enough so that your old expectations of her behavior can no longer be met.

I'm sure it is VERY stressful. So, the thing is, I think that the only that can change are your expectations. She appears to need much more help than in the past.

I would strongly consider hiring an aide for a bit of time, hopefully every day, to help her with her ADLs.

Do you think this has been a slow, steady decline or did it just kind of downslide quickly? If it was very quick, you might want to look into it with her doctor?
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justgettingby Sep 2019
I agree. Especially if it gets in the way of your job. I convinced my father to allow a caregiver to help mom in the morning through lunch. So that ends up 5 hours a day. I make dinner and deal with bedtime, and then the entire deal on weekends. Yes, it exhausts me. And yes, things will get worse for the OP and the person he/she is taking care of. Nursing homes are incredibly expensive, and even the ones with "OK" reviews are frightening. This is what keeps me taking care of my mom for now. She was sick and hospitalized in January then in rehab then home. Less than what she was. But coming out of 2.5 weeks in rehab with skin issues, that soon led to a pressure ulcer ... is what keeps me taking care of her.
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I would consider a nursing home or assisted living, or memory care. If she needs that much attention, assistance, and care all the time, one person can't keep going on like that... I would talk to her doctor privately without her in the room, and consider other options for her.
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Thank you, all!
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As my BFF likes to say when she's on a mission to get out the door: "Do not pass GO. Do not collect $200". It's a reference to the game Monopoly. Your mother's concept of time is warped or gone. Stop telling her you're both leaving in an hour because you're the only one who understands what that means and the expectations that come along with it. When you're ready to get her ready, first step is for you to organize what she needs in a pile or row: underwear, top, bottom, socks, shoes, etc. When she's ready you lead her out the door and do not pass go and do not collect $200!
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We would plan a dinner for Dad at 5PM. But we would tell him it was at 4PM. That way he would show up by 5PM!
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I believe that your expectations need to change. Your mother does not do this intentionally she is not able to do it herself. She needs assistance with everything and that means you will need to help her step by step. My husband has dementia and he is now needing assistance with step by step instructions when he dresses. He is still dressing himself but I need to help him. I have learned that I have to walk into his world and not expect him to do the things as he used to. I know that it is difficult for us to see our Beloveds in this state.
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Set an alarm clock where she can see it, and remind her that the time to leave is in 30 minutes, 15 minutes, 5 minutes, and when it is time to go, LEAVE.  I did that with my stepson when he would NOT get ready when it was time to go, and when he had to run out to the car in his undershorts with his clothes in his hands, and continue dressing in the car, that was the ONLY time I had to do this.  He learned his lesson!
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Oh yes, my Mom is like that too. I call it going "squirrel!" I write the times in her calendar and she usually calls me at least twice to be reminded. Sigh.

She lives in AL so when we have to go anywhere I tell her a time 30 minutes before we need to leave then show up 15 minutes before that. Then I have to watch her search around her room while she looks for her wallet, tissues, glasses, sunglasses, etc. even tho she has had days to assemble this it happens every time! So I follow her around finding her things, again, and gently urging her on until I have to say "we are going to be late, let’s move!"

She doesn’t need any of these things, I have it all in my purse or car, it’s just her way of keeping some degree of independence, wanting those days when she didn’t need anyone around to help her.

So my suggestion is patient persistence, knowing your mom can’t change and is surely grateful that you are helping.

PS Sometimes I call her an hour before pickup time to get her started on her quest ;)
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Take her out to breakfast two hours before any appointments.

Sorry, this is hard.
It is hard and frustrating.
You are not alone.
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Leave early. My mom is the same. So I leave 3 hours before any appointment. Sometimes we are still a little late. If we are early, we got sit at a coffee shop for a while. Leave early. Remove the stress. Hang out at Starbucks if you get their early.
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Yes, I've been there myself, dealing with my mom with Alzheimer's. We, too, would start the process of leaving an hour before. Sometimes it worked and sometimes it didn't. I, too, would tell her that if we didn't leave "now," that we'd be late, but she had no concept of time by this point, so it was sometimes a losing battle. I'd often warn people in advance that if we weren't there for coffee of dinner, for example, to just start without us. It was, as you say, stressful. My  post gives no advice; it just tells you that you're not alone.
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dedicatedtomom Sep 2019
Thank you!
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When my mother's dementia got really bad and she had an appointment, I actually wouldn't tell her about it until we got in the car. I would help her get ready assisting with bath, getting dressed etc then I would ask her to go for a ride with me somewhere and we would get in the car. I then would casually bring up it was time for her to see such and such doctor. Worked pretty well most of the time. Also, I would try to determine which appointments were necessary and which were not. Saved everyone a whole lot of stress that way. Good luck to you it can be very frustrating I know.
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Eighteen plus years of living with you? Time for facility living, IMHO.
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Been there, I would think she was getting dressed and find her back in bed !
They have no concept of time sadly. I find I have better results if I spring it on my mom instead of telling her in advance. You have to direct her through getting dressed yourself. Just start early and lead her through the steps. Keep your eye on the clock, she cant remember time anymore. Good luck!
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dedicatedtomom Sep 2019
Thank you!
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