Alzheimer's caregivers, guardians, and conservators

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
circular
Senior Contributor
Senior Contributor
Posts: 4552
Joined: Sun Nov 03, 2013 10:43 am

Re: Alzheimer's caregivers, guardians, and conservators

Postby circular » Fri Oct 26, 2018 5:40 pm

circular wrote:So some of you may have heard about the 'virtual dementia experience' or 'virtual dementia tour'. It's often recommended that caregivers go to one of these, when it's offered locally, to get an idea what it's like to have dementia. They modify your sensory input in multiple ways, and then before entering a room with various objects, you're given instructions what to do when you're in there, tasks relating to clothes in particular.

As a caregiver I've been meaning to do this for a couple years, so I had it on my calendar for this week, something to check off a list and to walk away with a better understanding of what's it's like to have serious memory issues. Now that I've done it, I don't think I should have. Like learning one's apoe4 status, there's no going back. When I left the experience I stopped by a landscaping place that holds good memories for me, but I found that the confusion the experience triggered in my brain continued to a degree, not severely, but for instance I had to concentrate on where the walkway was going that I was walking on, and placing my feet on the walkway, something that should be automatic while enjoying the plants. So my first caution is if you do this, don't plan anything right after. Give yourself time to integrate what you've just experienced and return to Your normal. Just go home or to a friend's house, for example, to process it.

The other caution is if you have any PTSD think hard before following anyone's advice to go to the virtual dementia tour. I have some active PTSD, albeit mild for the world of PTSD, stemming from something that happened this year (thankfully not directly to me but far too close for comfort). I found the anxiety and confusion of experiencing an approximation of dementia and what lies ahead for my parent, layered onto my new PTSD baseline for stress, was too much. While I've had anxiety in life, I've never had a panic attack, and I've had two today.

Some day in the future I may be glad I did the virtual tour, it may even motivate me to be disciplined on my quest to prevent or delay this horrible disease, but today I wish I hadn't gone. I think in my case I was better off not experiencing that. I was already a loving and patient caregiver, so I didn't need this hit of devastating and disorienting reality why I should be. I plan to call the Alzheimer's Association and tell them to get the word out to the people who run these that they should warn anyone with PTSD that it could exacerbate their symptoms. They did give fair warning about strobe lights and I skipped that part, but I underestimated the effect of the other modifications. I'm even wondering if it's particularly bad for e4 brains in some way, sort of feeding the toxic stress circuits we try to damp down.

Even without PTSD, don't feel like you have to go to these. It is helpful in many ways, but it's not easy. Try to assess whether you're in a strong enough place for it. That extra awareness was the last thing I needed to be dealing with. Why didn't I see that coming :( I can confidently say that right now a little alcohol would be medicinal for this e4 that raaaaaaaaarely ever has any.
ApoE 3/4 > Thanks in advance for any responses made to my posts.

User avatar
SusanJ
Senior Contributor
Senior Contributor
Posts: 2599
Joined: Wed Oct 30, 2013 7:33 am
Location: Central Colorado

Re: Alzheimer's caregivers, guardians, and conservators

Postby SusanJ » Fri Oct 26, 2018 6:23 pm

circular wrote:That extra awareness was the last thing I needed to be dealing with.


Oh man, so sorry you have extra stress from the experience on top of all the other stress in your life. Hugs my friend. Practice extreme self-care tonight, ok?!?!

NF52
Support Team
Support Team
Posts: 689
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: Alzheimer's caregivers, guardians, and conservators

Postby NF52 » Fri Oct 26, 2018 8:37 pm

circular wrote:So some of you may have heard about the 'virtual dementia experience' or 'virtual dementia tour'. It's often recommended that caregivers go to one of these, when it's offered locally, to get an idea what it's like to have dementia. They modify your sensory input in multiple ways, and then before entering a room with various objects, you're given instructions what to do when you're in there, tasks relating to clothes in particular.

As a caregiver I've been meaning to do this for a couple years, so I had it on my calendar for this week, something to check off a list and to walk away with a better understanding of what's it's like to have serious memory issues. Now that I've done it, I don't think I should have. Like learning one's apoe4 status, there's no going back...

Some day in the future I may be glad I did the virtual tour, it may even motivate me to be disciplined on my quest to prevent or delay this horrible disease, but today I wish I hadn't gone. I think in my case I was better off not experiencing that. I was already a loving and patient caregiver, so I didn't need this hit of devastating and disorienting reality...
. I’m so sorry your empathy led you to have such a terrible experience. I have heard of these and have suspected that they cannot truly offer an experience that is valid across the many variations of AD and other dementias.

I once was in an analogous session to show teachers what it is like to be legally or totally blind. Since I’m “legally” blind whenever I take my glasses off due to high myopia, I thought, “yeah, big deal, I can walk around all day like this”. I was shocked when others who never wore glasses said they felt dizzy, scared, disoriented. The same is true for exercises that try to present dyslexia, or autism spectrum. Just because my mother-in-law sometimes thought that people were moving her slippers didn’t mean she couldn’t still knit and watch the news. My grandmother thought President Nixon was bringing her ice cream, but still remembered her children and grandchildren. Even when my mother couldn’t find her way home from Wegmans, she thought the young man helping her was wonderful, and was only mildly upset about the loss of years of spatial memory.
We can be empathetic without having to experience the reality of those we help. And what you experienced today is likely far from your own future reality, dear circ.
4/4 and still an optimist!

circular
Senior Contributor
Senior Contributor
Posts: 4552
Joined: Sun Nov 03, 2013 10:43 am

Re: Alzheimer's caregivers, guardians, and conservators

Postby circular » Fri Oct 26, 2018 9:32 pm

Thanks for the support Susan and NF. I’m working on the self care, but I’m sometimes worried about my future. I do think a lot of health and other care providers (hair cutters etc) who may work with people with dementia, and who may not naturally be very empathetic or intuitive about dementia, probably should be required as part of their work to do the tour. I did learn a lot that’s valuable, even with the limitations, but the timing was all wrong.

Your points are well taken NF. At the same time there’s been a fair amount of research into the VDT, apparently rising to the level of an evidence base, and I get the feeling they are still improving it as they learn. Some of the sensory modifications are common in non-demented aging patients, and combined with other tweaks more specific to dementia it does make you appreciate in a general but real way what it would be like to be confused in your environment to such a degree and why certain behaviors and affects would arise. It was pretty bizarre that healthy people including me were exhibiting the behaviors seen in memory care residents.

If anyone has trouble sticking to a brain healthy lifestyle, to the extent we can figure that out, it might provide powerful motivation.
ApoE 3/4 > Thanks in advance for any responses made to my posts.


Return to “Our Stories”

Who is online

Users browsing this forum: No registered users and 4 guests