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Reflections - On Pacing
Posted: Monday, September 21, 2015 5:52 AM
Joined: 7/24/2015
Posts: 3020

Reflections - On Pacing

[This was in response to someone's post elsewhere in this forum]

I have dementia and I pace...a lot. I am stage 5 and maybe I can shed some insight.



I get agitated, mostly for reasons I cannot fathom. Only after lengthy introspection and reflection do I re-discover it is because I am uncomfortable in some way. Being uncomfortable gives me a weird never-ending energy and I could walk forever (it is not adrenaline). I am often up all night.

Because I still have some mind left, I tend to do things...tasks, whatever, with this excess energy. But I cannot express enough how it is an energy that has no end and does not tire me in the slightest. Nor am I tired the next day because of it...nor do I show any signs of wear or tear from it (like one would think I would...and like would make sense).

As to discomfort. I no longer seem to be able to tell what my body is feeling...or, more importantly, that I should do anything about all my insights come after the fact when I have fixed it and only understood what it was because of what it took to fix it.

Often the source is pain. I do have physical issues and have lived with high levels of pain for years. However, my pain levels have seemed to go down in the last couple years until now I have (I think) none. But this is not true, I still have pain...for when I take pain meds, I feel much better and can settle and go to sleep. (my pain meds hype me up, so they are not what is making me sleepy).

Other times, especially at night...I learned after painstaking effort that if I am hot or cold, I cannot sleep and pace endlessly. I discovered this one night when I put an extra blanket on and slept like a baby. Now, I often cannot have any blankets on or I am up and pacing. When that comes, it can take me days to figure out to grab an ice pack and take to bed to lay on my tummy...that will cool me enough to sleep like a baby. Maybe, when none of that works, it is just that the blankets themselves bother me?

I have noticed my clothes can be the culprit too, especially at night, they have to be 100% cotton or I am up and pacing.

I can easily see why people try to leave their house or wander off. I often want to run far and fast away from this discomfort which only feels like something hanging over me that I want to get out from under...and keep running.



The other thing I can think of is that, especially with the outings you mention, that you may have over stimulated him. As our processing fails, incoming information becomes volumous...(I don't know better words for that, sorry). It is like too much is coming in. Too much noise. Too many things I looked at (like at grocery stores). Too many decisions...sometimes just making one decision tips me over into too much. Too much clutter...too many things moving around, people pets kids...too many bold patterns. Too intense energy...happy, sad, upset, excited.

In times like those, when over stimulated...we need (and I mean NEED) silence. We need no clutter, plain as could be. If lucky, we need sleep...that will often restore. Over stimulation is often what is behind increased need to sleep as well.

Maybe just quiet time in a room by himself (if safe) to decompress?



The other is maybe he realizes that things are worse, and he might be sort of freaking out inside...and his mind might be racing trying to sort it trying to catch memories (and can't) and trying to figure out why he can't...our brains work so slow at figuring things out...and stress makes that impossible.

And I do not mean like a panic attack that other people have...just a desperate attempt to find solid ground again.

^ This is why, for me, honesty works best...because I am aware of my diagnosis and what it means. When I get very confused and can't find ground, all my daughter has to do is remind me that I have dementia...and that reminder is like a rock I can stand on and begin rebuilding ground. I wouldn't recommend it, however, if that was not already your way during an episode of agitated pacing.



He might be thirsty, hungry, or need to pee...and not know what it is he feels or what to do about it.


Hang in there. Try to find the cause. Not knowing cause, try quiet.

As far as I can tell, it doesn't hurt us to pace...even for hours and forever. Might scare you, because it is hard to watch and not really know. If he does not seem distressed...but rather focused and serious...then he likely has similar pacing to mine.

I would check for breathing on this one. When I pace my breathing is very low...and few. If it were panic, it would be fast and noticeable. If it were panic Ativan might help, but dealing with the cause would prevent. If it is just pacing...nothing helps but to remove the cause.

Hope that helps. Hang in there. Sending you comfort.

Posted: Thursday, September 24, 2015 10:32 PM
Joined: 9/7/2015
Posts: 3

wow that was very thorough and very brave of you to share. Thank you for helping us help others. I pray for you. This message helps me understand why my mom gets up at night and rocks and rocks sometimes for hours just staring into space. Thanks again and Peace to you.

Posted: Friday, September 25, 2015 5:38 PM
Joined: 12/10/2011
Posts: 280

Sun---Maybe I'm obtuse...but...Did you post your reflections on the caregiver forum instead of just this one. Some of your thoughts would have helped me with Charlie.

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