Lucid moments living with dementia: New research starting

With LBD there are constant surprises including moments (hours) of heightened lucidity & functioning. It honestly makes me question my sanity at times. It’s disconcerting & defies all logic but enjoyable nonetheless. I’ll check into the study.

My Dad was a lovely and very able man. With diabetes, too much enjoyment of e.g. Fry's turkish delight and single glasses of wine with supper, he went on to experience dementia. A few weeks beforehe died, I showed him an engineer's report about how to repair a nice little outbuilding in our garden.To my delight, he set about reading it (it wasn't very long) as he would have done in the past snd showed his appreciation of something being done to repair it. I just wished he could be like that all the time.

My mother died in 2019 after suffering from dementia due to multiple strokes and all types of strokes (vascular dementia) for ten years. Though I lived a thousand miles away, I visited as often as I could to help her and to help my dad help her. (He was in denial about her illness for years which aggravated the situation.) Though she struggled physically and mentally, there were many times when she briefly appeared to be her old self, for which I was grateful--but which also made me wonder if she might be intentionally withdrawing from life? During those lucid moments, we could chat and laugh, reminisce, and discuss even serious subjects. She admitted that she missed going to church and her friends. In retirement, she was extremely active in her community, holding managing positions within several volunteer organizations. As she became ill, she resigned from those positions and chose not to attend meetings. For a time, she kept up with her yard work. She was always close to her dog and cat, and they responded to her. Sadly, few friends visited her at home, though we always welcomed them, and she rarely wanted to go out. She stopped reading, but could still read letters and cards. She could still sing! and we did. While I was a talker, Mother was a very private person, and did not talk about her illness. I believe she suffered strokes without anyone knowing initially, and that's what altered her behavior. We sought assistance from medical professionals, in spite of her protests, though they were not as helpful as they should have been. At one time, they missed a small fracture in her spine in the ER and sent her home, saying there was nothing there. She was not a complainer, but was in such obvious pain that we got her to her regular doctor, who took one look at the hospital x-ray and admitted her immediately for surgical treatment. I think some medical professionals struggle with dementia patients, and perhaps reasonably so, for the patient is unable to communicate a hundred percent--which is why it is so important for them to be accompanied by a caregiver who knows them intimately and knows what is going on with them. Doctors would sometimes talk with her as if she was normal and her responses to them might have been appropriate for a normal person but were inaccurate responses in her case. I tried to be with her twenty-four hours a day during her hospitalizations, and hospital staff were very accommodating in that regard. They identified her as a fall risk by adding a colorful bracelet to her wrist; I believe all dementia patients should be identified similarly so that hospital staff will exercise caution in their communications.
Sorry for any rambling. It is painful for me to recall these details, and there are many things I wish we had done differently; I hope we did the best that we could with the knowledge we had at the time, but I feel like I failed her at times, too. In short, I was extremely grateful for those lucid moments, which were surprisingly frequent; they were also painful reminders of what I was missing.

This is a very intersting topic, I have read many stories of terminal lucidity incidents where people who were out of it due to demential/alzheimers came back for a short period to be interactive etc. with their family members. Death oftens follows soon after these episodes. Hospice nurses can tell you a lot of stories, including loved ones coming to take the dying home. Quite interesting.

Already signed up & excited to be able to assist with this important research!

Thank you, @coping123, for participating in this important research.

The researchers are close to wrapping up this first phase of the their study. It is so helpful to hear from real people and get insight into their experiences.

To help encourage others to take part in this research, would you mind sharing what it was like to take part in the study?
Was it hard?
How much time did it involve?
Would you do it again?

Sign up was simple. The survey was emailed & was very easy to complete step-by-step. My only suggestion for anyone participating is to be careful answering the question about the “number of lucid episodes”. I had a good estimate of the number but hadn’t tracked the data in my journal or calendar. The number chosen generated a separate set of questions for each episode (which makes sense). But it was a bit of a struggle to accurately answer some of the specifics. I now jot notes about the episodes to help me recall the specifics for the next questionnaire.

Also, I am so pleased to be participating in this study. Any research at this point will be too late to help my husband. But I am very optimistic about the future for others as the focus on early diagnosis & tracking of disease progression is being studied. I highly recommend participating!

Yes, the other day we were in a group setting learning about Shakespeare. I was sitting to the side of my husband and I would have to turn my head to look at him. I was looking to see if he had any reaction to the information we were learning. Every time I looked at him, he would not have any expression on his face at all. About the fourth time I turned to look at him, he gave me the warmest smile I have not seen in quite awhile. In fact, I had to take a second look to make sure what I was seeing. It was really such a special smile I will always remember.

How sweet, to feel truly seen by him! 🥰