A typical day anymore

[Poppygail]

Hey y’all, I have another neurologist appointment coming up and I’ve therefore been thinking about my typical days to describe to him and I thought they might be interesting/informative to the non-demented/caretakers among us. Of course, they may just be plain boring, hard to tell when your brain is scrambled.

Anyhoo, today for example, I was wide awake and looking for something to do by 3 am. Not a lot going on at that time so I just had a cup of coffee and caught up on email. Having acup of coffe used to be an adventure, adding water, measuring the ground coffee, , remembering a filter, it could lead to a memorable mess in a hurry. But thankfully we have almost entirely solved that with a single serve machine. Worst problem is when the water runs out. If I’m down it may take me 15 minutes to decide that’s why the thin.g won’t fix my elixir of life and then how to correct this. If I’m up, no problem.

After 45 minuets to an hour of this I decide I need to pack a few things in anticipation of this weeks coming move. The first box goes without a hitch, packed tight to the top, taped securely. The next one seems to go well but when I attempt to pick it up to move it to the garage I thought I had given my self a hernia. And it was a small box. My judgement was a tad off. And so it went for the next several hours, hit and miss, pack a box, unpack and repack it until I finally got it right. In the meantime, I would often just stand and look at the box for several long minutes, confused as to how I should be going forward. All in all, it only took about three times as long as it should. Thing is, I really had no idea that much time had passed, in my mind, it had taken no time at all.

By 9, I had finished what packing I was going to do, loaded the van with things the moving company won’t transport and we were going to take to the condo this morning, cleaned the downstairs for todays open house and was having another cup of joe when the rest of the family got up for the day.

After they got oriented, we were off. When we arrived at the condo, I did som final touch ups on my fireplace remodel, only had to redo 3 or 4 things because I forgot what I was doing while I was doing it or how to do it in the middle of doing it. Hey, at least I get a lot of practice at the things I attempt to do. Then I spent a couple of hours in my shop trying to organize. As far as I was concerned, it could have been 5 minuets or 2 days, time really doesn’t have much meaning anymore.

When my wife came to ask if I was ready to stop I realized that, yes, I definitely was. It was around 3 pm and I was spent. We decided to head home after stopping for lupper. We hadn’t had lunch and it was to early for supper, so, lupper. During the meal, the day caught up with me. I rapidly collapsed within myself. I became unable to accurately express my thoughts, finding the correct words became more and more difficult, and it started to seem as though I was swimming in molasses. Everything around me was moving in slow motion, almost stop motion and sound became hollow, almost distorted. I at part of my meal, packed up the rest, and participated in the rest of the meal as best I could.

When we got home all I could do was drag myself to the area in front of the fireplace where I like to lie, put on my BiPAP, grab a pillow and blanket and space out. Won’t say I slept but I wasn’t in this world either for several hours. Now, I’m still really foggy but I can make a little sense of the world again. And so it will be until I finally go to bed in a few hours.

Tomorrow, the entire process, with different activities, will start all over again ending in basically the same results. As Jeff likes to say, wash, rinse, repeat. At least life is boring for those of us with an altered reality.

Hope you guys have a restful night

Randy

[Poppygail Ambassador]

That should have said “isn’t” boring. It’s always something

[jeffcobb Ambassador in reply to Poppygail]

Randy; ass-deep in something else ATM but had to respond to this. I have said it before and I will say it again: folks with dementia are rarely if ever bored. Its a weird thing to say but its true, isn't it? Sing it brother!

More to come offline. Hang in there brother and the stuff you are writing about now are the exact reasons I suggested the safe room/house. Even twelve hours away from it would help methinks.

[Hidden]

Thank you for that..My husband is experiencing the same unfortunate ways of life..We are moving too, but I feel like he's getting more confused as to what we are doing..I have,to say that he is doing the same things that you describe however you are very lucky to be able to write ,spell, talk ,and read.. my husband cant do any of that..He can talk but he has a hard time finding words, and he shudders a lot..Good luck to you and keep writing..Happy Holidays!

Debbie

[Poppygail Ambassador in reply to Hidden]

Thanks Debbie and go luck with the move.

You are correct, I am very lucky to still be able to write, spell, etc... as you describe. I am thankful each day for the abilities that I have left. I’ve always been a very effective writer, words have traditionally just flowed as I put pen to paper.

Now however, something such as my original post or this response can take hours. I may type an entire sentence or two thinking I am perfectly conveying my point and look back at what I wrote to find something similar to this: Arfd ggtffd hyggffdd gushed uunfrdd bhgdr guygdcdf. Truthfully, it was difficult enough the first time to find the words I needed, it’s almost impossible to recreate it.

Or, I may be in the middle of a paragraph and completely loose my train of thought, never to remember where I was headed with the idea again.

I say these things just to illustrate that although it appears my writing is still fluid, t takes a great deal of effort to bring it off anymore. But I feel the effort is one of the few ways I can retain parts of my old self and it makes it all worthwhile.

Randy

[Hidden in reply to Poppygail]

💕 keep on writing and never give up!!

[jeffcobb Ambassador]

I have thought about posting a typical "day in the life" thing but didn't want to end up incarcerated. All kidding aside, while to me it would be informative I was concerned it might scare others. Its funny but isn't fear very contextual? I mean, how many things do we patients live with that would scare the poo out of many normal people because they view the loss of whatever ability thru the lens of having them all, whereas we tend to be more focused on whats left so we don't tend to walk around all bummed out and stuff. Unafraid even. Same thing with the eventual physical end; to every patient I know, me included, death is just a thing, not to be anticipated, feared or anything else, just like the freezing temp of water is 32 degrees (F for our pals across the pond). I never fixated on it before really, though if I knew then what would happen now I might be angry or scared then. But now, when most things are kinda definite, its just a thing. I fear going to the store more than that, and death scares most people, it even freaks out people trying to understand why I am not freaking out. Context. When I first tried to learn something, anything about this I bought a book written by a lawyer who had AD and by chapter three I could read no more, scared the crap out of me. Flat-out. Nowadays the things that scared me then from that book are more like trips to the doctor; not entirely pleasant but it won't kill me either. Dang, theres that word again.

[Poppygail Ambassador in reply to jeffcobb]

Hey bud, I understand exactly what you mean. My ultimate demise, although fairly set, is just something that’s going to happen, nothing more, nothing less. Very few of life’s major concerns really bother me any more. But let someone click their nails on the table.....I could bite through nails.