My LO fell and sprained her ankle 2 weeks ago (3rd degree ... the worst). Of course we've had quite a time since dementia symptoms, as we all know, increase dramatically with any kind of health issue. She's had several meltdowns over not being able to go to mass (all meltdowns were during sundowning or through the night, even though she was still crying about it some during the day). The doctor finally released her to go to daily mass last Thursday, but only if she uses her new walker and has a caregiver with her. I thought she'd be thrilled! She went and did fine Thursday morning, but when I arrived after mass, she began to talk about not going again till the first of the week. I got pretty frustrated since she'd put us (all her caregivers) through so much grief about it for 10 days. We talked about it off and on through the day and I reminded her it was the doctor who said she could go. When I left Thursday evening, she was good to go the next morning, but got a call from the caregiver at 6:00 am on Friday that LO refused to go. I have to admit, I was livid! I had spent so much time on making all the arrangements to get her back to daily mass and suffered through all the meltdowns over it and stayed sane through the daily whining and miseries over it. And now she's REFUSING TO GO?????

So when I arrived at 9:00 that morning, I was NOT in a very good mood. I went at it the wrong way with her. To make a long series of conversations short, she said again that she wanted to go and I reminded her all the arrangements were made and she was happy about it again. For about 10 minutes till she told me again that she didn't want to go! I know all of you can understand my frustration. Thank God it was time for her nap because I was about to really lose it!

During her nap, I had a nice rant in our caregivers book. I decided her "reasoner" was broken and I was going to really push to get her back to her routine, of which daily mass was the most important thing. I went on and on in the book. Reading it back now, I sounded like a dementia-Nazi. LOL

After she woke and started in about not going to mass, I was a little calmer (MY "reasoner" works better when calm) and had the same conversations we'd had several times earlier, reminding her the doctor had released her to go and all the arrangements were made. She was happy once again to be able to go. For about 10 minutes. Then she didn't want to go again and we had the same conversation we'd had earlier and she was thankful she is able to go and looking forward to it. For about 10 minutes. We had the same conversation again and she was happy again. For a few minutes ... etc.

All of a sudden, I had a light-bulb go off in my head!!! I realized that each time we talked about going to mass, she calmed down and was happy to go when she realized a caregiver was going to be with her the whole time. Because of her brain disease, she was not remembering that part of it, even though we discussed it in full each time. Her routine before the sprain was that her caregiver would drop her off (no walker) at the church, she'd make her way in alone (been doing this for years), sit in the same pew as always, and I'd be there to pick her up after mass. She could only remember the old routine and could not keep in her head that someone was going with her to help. And that is why she would decide not to go!!! Every 10 minutes!!!

She couldn't retain those little details which assuaged her fears about having to get around on a sprained ankle. She couldn't imagine making her way across the sanctuary with the walker and was worried about where to store it during mass. She couldn't retain in her mind that the eucharistic minister was going to bring communion to her pew. She kept forgetting she had a helper. It only took me about 25 repeated conversations to get it. (Sigh.) Now the FIRST thing I say when she doesn't want to go is that she has someone going with her.

So, this dementia-Nazi's heart melted and I felt like I'd been given a gift from heaven which will help me understand not only this issue, but the many, many more issues which will come up in the future.

When she is being unreasonable, I need to look for something which might be causing fear.

How easy is that, right? LOL

Teri

Please somebody, say something!

I shared this story becuse I thought it was a cool revelation which might help us all get through some of those "moments." That maybe FEAR is what makes our LOs fight us sometimes, because we think (or KNOW) we solved it all, and we wrongly believe they remember what we told them 10 minutes ago.

I thought some of you might have similar revleations or stories like this one to help underscore what I think I learned.

But please speak up if I missed the boat!

Teri

I think it was a neat observation, it really takes some observation and luck/skill to understand what the key points are in our LO's obsessions.

Teri R -

You didn't miss the boat - you caught it.

I've spent a huge amount of time trying to figure out what sets my father off. Often he gets most upset when he feels most helpless. He wants to be of service to others, not to be dependent on them. But it's fantastically hard to keep this in mind and work out all the variations so that we can calm him down. Example - he's hugely resistant to trips to the hospital or the doctor's office. It was only last week, after months of upheaval, that our care manager stumbled across the idea of telling him that she was the one who had the doctor's appointment, and she needed him to go along with her to help her out. He calmed down instantly and for the first time in a year or more, he went and came back with no upset whatsoever. It all seems obvious in retrospect, but it took us forever to come up with what we needed.

Other observations? Other success stories?


Best,
Alan

You really DID have a break through but boy, that is not so simple to work through all the time. It's hard to get to the bottom of what is causing the fear and/or frustration while you are trying to keep your own emotions in check at the same time! What a challenge this disease is!
Thanks for your insight.

I love the term "dementia-Nazi" -- I'll remember that for my own ultra-frustrated times when my Drill Sergeant persona takes over!

And thanks -- I'll try to remember, too, to look for the fear behind any fight.

A friend of mine is a devotee of "nonviolent communication" and I've wondered if learning more about that would help me deal better with my LO. I think that approach is designed to help people perceive what's really underneath someone's expression, and to respond in very constructive ways that enhance the relationship. If the network of trainers who teach this approach could design a special course for caregivers (that we could study in our spare time ha ha) it might be great.

Meanwhile tho -- thanks so much for sharing the light.

Good for you, Teri!
When mom was still able to go places, it took me awhile to realize the reasons she didn't want to go were rooted in fear. Fear that she wouldn't know what to do, and fear that she wouldn't recognize people. When I reassured her that I would be with her, she was fine....of course, I had to promise her I wouldn't leave her side, even when it was family Christmas at my daughter's place.
Sadly, she is no longer able to go places. Sigh. She is too afraid to even go out--with me-- into the beautiful fenced yard at her care home. And this is a woman who spent 8 hours a day, making her garden beautiful.