How do I explain

[Poppygail]

A few days ago, someone I trust very much asked how I was doing that morning. Had this been most anyone else, they would have received the normal "fine", "good", etc..., just any placeholder to get through the monment. And that's because most people truly do care but just have to much going on in their own life to really understand mine. It's just too exhausting to try to explain the nuances of my twisty mind. But not this person. I knew she not only cared but actually wanted to know, to help. So ,I told the truth. I was in a deep, dense fog. The world was rushing about 5 steps ahead of me and I just couldn't keep up. It was as if when i turned my head my surroundings would slowly follow my vision in a syrup like progression. As I struggled to explain all this, the question came that has bothered me since, "How does that feel?" It took me aback for I hadn't truly thought much about it before then. And no matter how much thought I put into it now, I couldn't come up with a reasoned answer.

I realized I felt sluggish, drained, drunk, apathetic, bewildered, confused, crowded, alone, tingly, numb. All of these yet none of these. It was a jumbled mess of them all, each fighting minute to minute for dominance with none ever gaining complete control. I realized that with all that swirling around in my already flaky mind that I truly didn't know how I felt. And I certainly couldn't put it all into a coherent set of words to help someone who had never experienced this situation understand what it was like. I was living it and didn't understand, how could my ramblings come close to conveying all this to someone else.

As I thought about all this, I slowly began to understand that I couldn't. At least not verbally. It takes much to long to get thoughts from my mind to words on my tongue. And often, no matter how I try, when those words come out they are not the ones I intended. That's when I began forming this little piece of sunshine. If I really take my time and spend some real thought processes, I can eventually get something reasonably intelligible on the page. From this, I'm sure you can understand this "short" post required several long days to put together. It's just another part of "how it feels".

Part of what I'm trying to convey here is when you observe your affected LO's looking so confused, unable to articulate anything you would consider informative about their world, I would ask you to consider that they probably don't know what they're feeling either.

[daddyt]

Once again Randy, you've managed to articulate my (and yours') thoughts and how it feels to live and experience this squatter that occupies our minds. I had my wife read your post so that she can fully "understand" ours scrambled minds... I think she has a better understanding now. I would like, with your permission of course to repost that portion of your post that describes "how it feels" with family and friends.

Happy Father's Day

[Poppygail Ambassador in reply to daddyt]

Thanks DaddyT, as always, feel free to post whenever you think it will help others.

Happy Father's Day!

[jaykay777]

Thanks for your description of how you feel.

[Jillco66]

Thank you for sharing. I am really struggling to understand what my mother is feeling like. I see so much confusion about everything. She is becoming paranoid about people taking her things. She has lost sense of time and days and months. I see emptiness in her eyes with an occasional glimmer of joy when we reminisce or talk about my kids her grandchildren. She has not once yet said out loud that she has Alzheimer's. I don't want to keep reminding her but she doesn't understand why she is where she is. We moved her from her apt in NYC where she was living alone for the past 25 years. We started with home care but that wasn't enough anymore. I cannot say enough about Arden Courts in west orange NJ. They just care for people with Alzheimer's /dimentia. She thinks she is in a motel/hotel. My heart is breaking into a million pieces everyday as my mom slips away more each day. If you can give me any advice as how or what I can keep saying to her to ease her mind at all I would greatly appreciate it. You have been a tremendous asset in helping me understand what is going on in my Mothers mind. For that I am so grateful. I wish you a blessed day today and everyday Warm regards- Jill

[Poppygail Ambassador in reply to Jillco66]

Thanks Jill, you're kind words mean a lot. Your mother's story mirrors that of my mother's in so many ways it's scary. Especially the paranoia and inability to maintain a sense of place and time. Our situation was slightly different though in that my mother had DLB, not Alzheimer's. Difference being, especially in the beginning, she would occasionally cycle back to "normal" and almost understand what was happening. This cycle occurred less and less until the end. I guess it's neither worse nor better, just what it is.

REPEATED reassurances and almost honesty about everything where all the we found that gave any relief, short lived as it was. You could work all day to instill a sense of home and confidence in their safety only to find yourself back to square one. Frustrating! But, you know you're likely to have a victory most everyday.

And I would encourage you to keep talking to like she's still there, not like a small child. I tried as much as I could to do that with my parents and believe they were in there listening somewhere.

You are very much in my thoughts, yours is a horrible position to be in. Patience, love, self care, and some two way forgiveness will go a long way in getting you through this.

Have blessed day,

Randy