An interesting description of dementia by someone who has it.

Palmetto Peg

My DH is about 2 years into his diagnosis of moderate MCI and dementia of unspecified nature. He was having an especially difficult day and couldn't seem to remember anything or get himself oriented in time or place. I asked him what was going through his mind, and he told me he felt like he was seeing his life through slides shown on a projector, but the slides were all out of order. He said he didn't know if he was seeing the present or the past because the slides kept changing from when he was young, to a few years ago, and then to the current time. It really helped me realize what his life is like! He doesn't know which slide will appear next. Some of the slides are sad - he was crying because he thought his mother had just passed away, and the next minute he was more with me and planning our day. I felt so bad for him - what a terrible thing to live with. I think most of our LO's go through something similar but may have lost the ability to articulate the feeling. Hope this helps someone think about what their LO is experiencing.

Emily 123

Thank you for sharing this. My mom makes this gesture where she makes a kind of circle above her head when she talks about her thoughts. We're just going with her memory being 'full' so she has trouble retaining things, so I don't like to ask her, but I always wonder.

eaglemom

Thank you for sharing. Yes, that is very heartbreaking. My DH once told me it was like dense dense fog and trying to drive through it. Nothing made sense, no landmarks and you feel you have to keep moving.

It is interesting how differently they've described what they are feeling, but it seems almost the same. Such a devastating disease.

eagle

Ed1937

Thanks for sharing. That's an interesting observation.

Jo C.

Thank you for sharing this sad insight. My LO had bvFTD. When it had advanced, but not yet at the last stages, she would sit and hold her head, rocking back and forth, back and forth, in terrible distress crying out; "Make it stop, make it stop!" It seemed frightening or severely bothering thoughts were whirling about in her head and she could not stop them. At the time, her Board Certified Geriatrician was a jerk and would do nothing. The dynamic would stop but later would return; it was not a one time thing.

I was horrified and did not know how to help as re-focusing or validating or anything else did not help when that happened and she was truly suffering. I worked around her Medicare Advantage MD Group and got her to a good Neurologist, taking it into my own hands. Would have paid for it privately.

The only thing that helped extinguish that horrible dynamic as well as some pretty dreadful behaviors was Risperdal which was almost like a miracle in how fast it relieved all of that and returned a reasonable semblance of some quality of life.

It is like the circles of hell to have to live with such terrible dynamics inside one's own head . Thank goodness for those who have LOs to advocate for them; for those who do not have that, it is certainly a tragedy.

J.

Iris L.

When you were a child, did you ever spin around and around to make yourself dizzy? I have felt like that. Also, for a long time, I felt like I had a hangover, and just needed to sleep it off. But no amount of sleep cleared up my mind. I also heard disturbing voices. Fortunately for me, my worse brain issues have resolved. I still have brain issues, but not unbearably severe like before.

Iris

PookieBlue

Interesting slide projector analogy. It comes to mind that most movies in the past seemed to be linear. Then there were trilogies. Now many shows alternate in time; present, past, and future. My DH can not keep up with most of these movies/shows. I imagine that living in a mixed up slide projector world and watching these back and forth shows would be really disorienting. My DHs patchy world has overlapping dimensions. Makes us both crazy.

Palmetto Peg

It is sad, isn't it? I also think our loved ones suffer from a form of PTSD - imagine having to relive the sadness of losing your mother over and over again, and not being able to tell if it was just happening or was a long time ago. I am sure our returning service men and women could relate to what my husband is going through. They relive the horror of war and can't get away from it, and our loved ones can't get away from their jumbled thoughts. I can definitely say that I feel so much more compassion toward him after he told me what it feels like.

GothicGremlin

The two things my sister Peggy has said to me about how it feels --

1. When I was getting ready to read the Wendy Mitchell book, Somebody I Used to Know, to her, Peggy said, "that's exactly how it feels - I'm somebody I used to know".
2. Peggy described the 'fog' that eaglemom described as a 'haze', like looking through water. Everything becomes distorted and she can't really tell what's going on, so it becomes scary.

This was all back when she could describe things well to me. She can't really do that now. But at least I have a little insight now into what it's like for her, and can ask her things like 'are you in a haze right now?' She's able to tell me, and for her, just knowing that she's been heard and understood helps.

Quilting brings calm

in 2020 my Mom described it as parts of her brain were flying off in different directions. She no longer describes it, just says she is confused today.

Jeff86

My DW once said, ‘I don’t know who I am.’