Do we understand

[Poppygail]

For the caregivers out there, what do you believe your understanding of the demented persons understanding and feelings during their worst times? I know I thought I had a sound idea of how my parents were feeling and why they were reacting in the manner they were. I was so WRONG!

Until I developed LBD, I really had no understanding whatsoever as to what was going on in their minds. And truly, I probably still don’t as the dementia process is so diverse from person to person. For example, my mother refused to use her walker unless someone just put it in her hands and said this is for you. It got to the point that I placed her walker at the foot of the stairs every morning so that she had no choice but to move it or use it to get by. Well, of course she would just move it. When she walked/stumbled into the family room I would ask where her walker was and her answer most every time was, “I don’t know”, which irritated me to no end. In my mind, the supposed healthy one, there was just no way she could not remember having just moved the walker out of her way to come into the family room. Now, NOW, I see she most certainly did not remember moving the walker. My wife reminded me last night to take my meds and before I turned my head back to something, I don’t know what, I had forgotten what I was supposed to be doing. 15 or so minutes later she asked had I taken my meds and, to me, it was as if it was the first time I was hearing this suggestion. To the caregiver, this may have seemed as though I just ignored her suggestion and chose to do my own thing. But truthfully, I just couldn’t retain the information long enough to complete the task.

Another example, and I’ll be much more brief this time, is when either of them were anxious or scared. I thought I understood those feelings. Again, WRONG! It is so, so much worse than anything I had imagined.

I truly believed that, for most of their disease process, they were depressed to some degree, and they may well have been. What I was probably mistakenly calling depression was more likely simple apathy. I am apathetic a good deal of the time. It may appear that I have a textbook case of depression to my caregiver, but again, “WRONG!”. I simply don’t have the mental ability or the energy to put forth the effort.

So, what’s your understanding of what your LO is experiencing? Are you as arrogant in your beliefs as I was? Or are you smart enough to realize you have absolutely no idea? I would truly like to know.

Take care.

Randy

[ChristianElliott Partner]

Thanks for the reminder that the dementia reality is unique for every individual.

[jeffcobb Ambassador]

My pre-dementia dementia experience (say that three times fast) was limited to my Grandmas AD and she didn't ask me questions but where I did see/feel this was with my brother who died of Cystic Fibrosis when he was 16 and I was 14. In the last days he was so oxygen deprived he kept asking the same questions over and over again; my 14-year old brain could not figure that out but yes, got a little irritated after the 10th iteration of "Whats on TV tonight?"