My husband has memory loss due to Lewy Body Dementia. Any ideas how to jog his memory?

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He often insists I have not told him about a medical appt. and gets very upset. We live 1 hour drive from his neurologist and other specialists. He will protest, saying I haven't told him. I have told him, of course, and we have discussed it the night before. I often have to cancel at last minute because he gets so upset with me for not warning him about the upcoming appt. He dislikes medical appts. in general and particularly balks at those which require travel. I need help in handling this. One suggestion I have seen is to not tell the patient beforehand....just say we are going. That doesn't work for him. I need ideas for memory joggers to display for him and other suggestions for how to handle.
thanks....

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Hi landlocked

My experience is working in the field of aging care as a Geriatric Case Manager. I have for the last 15 years specialized in dementia care. The situation you describe is common some worse than others. Of course, I do not know you or your husband however positive reinforcement is frequently way to handle these matters and follow up with some activities. The activities still enjoyed by your husband.

One such example was a woman having very little resource basket to pull from. She knew her husband loved his activities with a community band. However, he was now unable to play his instrument. She developed other ways he could be involved and she volunteered with him.

So when a medical appointment was to come up. She would telling him of the appointment and then go into the shopping they need to do for refreshments, making flyers or taking tickets. For this entertainment he had enjoyed being apart of for many years.

It is not too difficult to come up with a positive activity when there is time to think about it in this light. I have seen this positive activity accomplished with volunteerism, going back to a place of work (in a business they were instrumental building).

None of the activities listed above or ones you come up with should require another medication. This will set up a negative cloud from the very beginning.

Please take care of you, which is easily lost in the bigger picture of caregiving. If care of you is not taken there will come a time when he really needs you there as his wife, family, advocate and so on, and you will not be physically able to do so. I admire you for all the challenging and difficult work you are doing now
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landlocked, My husband's journey with LBD lasted 10 years. I can sure relate to what you are experiencing!

There are two aspects to your husband's reaction: He truly does not remember having the appointment, and he dislikes the appointments. Not being able to schedule your own life, being told when you are going to do what, is a blow to your adulthood and is resented. But I suspect (from our experience) that if the forgotten appointment was for something he liked he would take it in stride. If you told him it was almost time for the baseball game he might grumble a little about short notice, but he would like the pleasant surprise.

So ... 2 issues to solve.

What can you do to help a person with dementia remember appointments? Very, very little. For some people it helps to have a visual reminder, like a large calendar or a white board. My husband kept up his habit of using a large appointment book with one week per page. Try visual reminders. I'll warn you, though, that sometimes this backfires. Dreading an upcoming appointment they don't like can cause bad feelings and even symptoms. My mom is now in a nursing home and her memory is shot. We only remind her ahead of good things. "Ray is coming to play cards with you tomorrow" or "Wednesday is the day the van takes you shopping." We do not mention that the nurse is going to start drops in her ears tomorrow.

Even if they like what is on the visual reminder, it can backfire. My husband would want to eat and get dressed at 4 am for a 2:00 band concert. My mother fidgeted all morning knowing we were going to the plant nursery in the afternoon.

Try visual reminders. You'll learn how to customize the experience for your dear hubby.

You may also be able to deflate the "you didn't tell me" anger by going along with it. "Oh, didn't I tell you? I am so sorry! I was sure I did but if I forget I hope you'll forgive me. I'll do better next time."

Repeating every day that something is coming up did not work for my husband or my mother. The concept of future time is lost to many with dementia.

As to the second problem, he doesn't like the appointments, I think that is the crux of the matter. Sweeten the deal, as others have suggested. Our neurologist was a little more than an hour drive away, and we had to be there early in the morning. I allowed extra time and we had sweet rolls and fruit at a bakery cafe once we arrived. (Not our usual breakfast.) But fortunately my husband liked the appointments. People there treated him as an independent adult and listened carefully to his answers. They praised him for what he could still do. He was very aware of having LBD and was interested in hearing about it.

For other things he wasn't so keen on going to, I'd sympathize and remind him, "I know this isn't your favorite thing, and I wish our situation were different. But I'm working very hard to ensure you can stay at home with me and I do lots of things I don't particularly like. You have to so some things, too. It is part of our partnership."

That approach depends heavily on the person with dementia having awareness of the disease and also having a high level of trust of the caring partner. (We did NOT start out on that basis!) I was lucky that for the last several years this worked well for me.

Let us know what you try and how it works. We learn from each other!
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Landlock, what helps with my Dad is that the appointment is set mid morning so by the time the doctor is finished, it is time for lunch. So on the way home, the Caregiver will stop at a fast food place to pick up lunch and Dad really enjoys getting a McDonald's or Burger King hamburger and fries... his treat :)
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My mother has vascular dementia and doesn't remember I tell her things. I can tell her several times and even mark it on the calendar, but she'll say she didn't know. I tell her that I told her, but she doesn't believe me. If she doesn't remember it, it didn't happen. It is easier for her to think that I am responsible rather than think that her own mind is failing.

When I first came here, she used to cancel appointments she didn't want to go to. We don't do that anymore. I just tell her we need to go and she doesn't argue now. The main thing that helped there was her opthamologist dropped her as a patient because she kept canceling appointments. It made an impact on her, so I am glad that it happened. Maybe if you tell your husband that the doctor may drop him if he cancels appointments it would work with him.
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You can always try consistently reminding him every single day that he has an upcoming appointment. Make it like a countdown. "10 days until your appointment with so and so". Then, "9 days until your appointment with so and so". Perhaps taking him somewhere pleasant AFTER the appointment, will make him more inclined to remember. Sometimes if it is a pleasant experience or a reward, people are more likely to have it in their memory.

Try "rewarding" him after every appointment and see if maybe it helps a little bit
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Have you tried a big wall calender? My dad has dementia. No amount of arguing or reminding will work but if it is written in on the wall calender he will accept it and go to his appointments.
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