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Why Don't You Have Some Peanut Butter With Your Dementia?
The_Sun_Still_Rises
Posted: Thursday, August 6, 2015 10:45 AM
Joined: 7/24/2015
Posts: 3020


It can be really difficult to explain to others the trouble I am experiencing with my brain and, more importantly, just how it makes everyday simple tasks that everyone else takes for granted, supremely difficult for me to do. Like the other morning when I went to the fridge to get a spoonful of natural peanut butter to go with my coffee and I see that there is not much left...and yet I have no idea how long it will last exactly. So the gear in my brain starts churning on this and eventually I come up with that there are about two spoonfuls left...but I still have no idea how long that will really last, and I am acutely aware that I very much need my brain to know this...and that I need to know this. So a part of me gets metaphorically behind that gear in my brain and is trying like everything to push it even just a little, however, it will not budge.


Later in the day the gear budges just a tad and I realize some of the difference between my functioning now and how I used to function. Before my brain had trouble, I would have had a clear idea in my mind about where I was in the peanut butter usage area. I would have automatically had some clue about when I would need to get to the store. Even as my kids would use the peanut butter, my brain, somewhere in its quiet recesses, would have been calculating the change in when I would need to get more, and I would have also had my calendar in my head. And even if it wasn't in the forefront of my conscious attention - it would have always been there. If one of my kids called me up and asked if we had any peanut butter, I would have known, and known how much there was, and where it was. Not so these days.


Still later on in the day, I realized that before my brain started going bad, I would have known in a heartbeat that there was two spoons left and that I needed to get to the store right away. The only saving grace is that because I can remember that I already had a spoon of peanut butter that day, I tend to not have a second spoon of it (even though I want it) with my second cup of coffee...and that I am tending not to actually drink the second cup of coffee.


By evening, I had figured that I had two days left of the peanut butter, but still could not conceptualize much meaning...two days, two weeks, two months feel petty much the same as I have lost almost all my sense of time. I can still tell what order events happened in, but whether it happened yesterday or last year, I have no clue. And I knew if I ate more peanut butter today, there would be no way for me to change the determination I just made that I had two days left of it. For some reason, that determined information tends to stay stronger and overrides any reasoning or logic I may put to it after the fact. And since tomorrow will feel like a completely different day (and today becoming yesterday) and yesterday will feel like a week ago (which would tell anyone else that I had better get on down to the store) to me, it is a new day and maybe today I have a completely different amount of peanut butter? In other words, I won't remember that I had worked this out at all, and the realization that I only have a little peanut butter left will be a brand new realization.


By bedtime, and only because I have been making a very concerted effort to get things organized so I can function better, did I think to put it on a list by the door. Although, seeing the list tomorrow, I will have no idea if I really need peanut butter because I will not be able to remember the frame of reference I had when I put it on the list. So even if I managed to 1) keep it on the list; and 2) take the list to the store, I would be just as unlikely to buy it because I can't remember if I really need it or what I was thinking when I put it on the list. Plus, it is not something I get every time I go to the store, so it is not a part of my auto-pilot (which I have been depending on for years to function at all), I would defer to my auto-pilot as a more trusted source.


For a few years now I have been putting exclamation marks next to things on lists I think I might forget, which means to me: that even if I have no idea why I put it there, even if I think I don't actually need it, just get it anyways. I usually follow that. I didn't think about putting exclamation marks this this time.


Also, because peanut butter was added to the list, it stands out as foreign on the list, so I am never really sure if it is suppose to be there at all.


If I am left on my own with this, it can take about six months of pushing on this particular gear in my head before it moves another click and I will succeed at getting the peanut butter. I think I probably need it before then, so that adds a bit of urgency to my need to figure this all out.


Because all this figuring happens so naturally for others, almost subconsciously, it is very hard for others to understand that I really need steps of tasks broken down (broken way down). And even harder to get another person to realize that they will have to actually think about it because most of the steps take place subconsciously for them. But until it gets broken down, or until I succeed at getting that gear to move, I will not be able to get myself my peanut butter.


Thankfully, tomorrow when I go to get peanut butter from the fridge it might occur to me that I have to go shopping that day. Or maybe, all the better, I was already going to go shopping that morning anyways and then maybe I would still remember why I put it there.


Or, another saving grace (at least with the peanut butter) is that it is on my monthly list, so at the start of next month I will get it. However, until then, I will not have it. And after a few days I will forget about ever having it. And then it will seem strange to me to be buying peanut butter and I would not be able to tell you why I am buying it when I do, that is something I will have to re-discover at some point, usually when my auto-pilot kicks in and just does it.


Equally separated in my brain is the concept of how much money I have and whether I have the money for getting peanut butter. If I sat down to try to sort these two things out and try to figure money and the grocery list...well, I wouldn't probably ever be able to merge those two things. And I could tell you, looking at the two pieces of paper, that I have $25 and the peanut butter costs $7...and I would see in your face that it makes perfect sense to you whether I have enough money or not, but I do not know.


I often feel like I am pleading to those that are around me to please just tell me this. However, for some odd reason, people don't like to just tell you...I don't understand that either, so I just tell everyone until someone verbalizes their reaction so I can know. Until then, I don't know and because I don't know I am stuck.


I have been struggling with dementia for over 6 years before being diagnosed. I no longer remember why I put it off, or was hesitant to get tested...and while I did not need a test to tell me what I already knew (I'm struggling to do all of my activities of daily living now), it seems silly to me (now) that I did not get the testing done many years ago when I would have had a better chance to get adaptations into place in the home so a to function better for longer...and so they would have a better idea how things are changing. It is rare for me to have reflections of how things used to be (my function) anymore, and that is why I thought to write it down.


PS: Would you like some peanut butter? I really love my natural peanut butter...and I really love it with my coffee, it just brings out this wonderful "roasty" flavor that I find really divine. Another way things have changed, some unknown piece was lost and in its absence...I really enjoy things, like my coffee and peanut butter, or the leaves gently blowing in the wind against a vibrant blue sky.


Michael Ellenbogen
Posted: Thursday, August 6, 2015 12:21 PM
Joined: 11/30/2011
Posts: 3456


I can so relate to your thinking and tanks for sharing. But I don’t get peanut butter in coffee. The problem I am starting to have is everything seems very expensive to me when I look at prices. Not very easy always counting the change. There is so much improvement needed to make our lives easier in this world. It will not happen in our time but there are some movements starting to happen her in the US. I also hope the find the dam cure so they will not need it, not that it will help me.


Mimi S.
Posted: Thursday, August 6, 2015 12:33 PM
Joined: 11/29/2011
Posts: 7029


Hi again Sun also Rises.

Just a note to say how well you do in explaining the way your thought process works.

Do you still live alone? Are you getting any help for such things as shopping and managing your finances?

I'm so glad you found us.

Jo C.
Posted: Thursday, August 6, 2015 2:25 PM
Joined: 12/9/2011
Posts: 11214


Wow! Thank you SO much for your wonderful insightful writing. I learned a lot from what you have written and now see things much more clearly on a different plane. You have taught me a lot.

I am really glad you have found this supportive place and am glad to be meeting you; we are fortunate to have you join us in this extended e-family.

With best wishes and looking forward to getting to know you better,

J.


Jo C.
Posted: Thursday, August 6, 2015 2:25 PM
Joined: 12/9/2011
Posts: 11214


Wow! Thank you SO much for your wonderful insightful writing. I learned a lot from what you have written and now see things much more clearly on a different plane. You have taught me a lot.

I am really glad you have found this supportive place and am glad to be meeting you; we are fortunate to have you join us in this extended e-family.

With best wishes and looking forward to getting to know you better,

J.


w/e
Posted: Thursday, August 6, 2015 3:27 PM
Joined: 3/7/2012
Posts: 1751


The_ Sun _Still _Rises...
Another marvelous essay written not only from the cortex of the brain, but from the soul/spirit/intuition of the brain, indeed.
Keep rising. And bring some warmth and light to us.

PS: As for me, every day, a spoonful of almond butter before, in-between, or after ...
Certainly, a couple of times a day, a spoonful of coconut oil for good measure.
Definitely, a glass of red wine with dinner.

OM
The refection of the moon on a tranquil lake...
Ah!

PPS: My immortal beloved loved the flavours of almond. Coconut. And his glass of red wine, as well.


The_Sun_Still_Rises
Posted: Friday, August 7, 2015 8:52 AM
Joined: 7/24/2015
Posts: 3020


The peanut butter not in the coffee...bit you sort of lick a little bit and then drink the coffee...mmmm yum.

I have been trying to figure out about making Lara Bar knock offs where they do cashews and dates...thinking cashew butter and dates...or almonds and dates and some chocolate powder. But I haven't made the leap yet.

I am never sure how to answer the live alone question because I live with my elderly mom, and my young adult daughter and new granddaughter...but they all require my care rather than help me. I also get ILS (Independent Living Skills) services which *should* help me with things like paying bills and figuring out grocery lists. We are going to be starting soon with a new company that specializes in brain injury...so I am excited that maybe they really be able to help. I the past, they have not been that helpful. In the past it has been like, we can open your mail for you (I don't need that), but we can't tell you what it means (I do need that).

Yes, costs are so much when one has a really limited budget. The kinds of things one could get it budget wasn't an issue...like a $20,000 dementia service dog *wishes.* But what can anyone do, but do what they can with what they have?

Thanks everyone.


alz+
Posted: Friday, August 7, 2015 11:51 AM
Joined: 9/12/2013
Posts: 3560


SUN -

Super useful for everyone that you could write that out. NO way people without memory issues understand, so all help and services are off base as based on GUESSING.

and guessing wrongly.

and I am GUESSING the peanut butter is just one issue out of every move you make? Re-learn what was automatic, all day long.

Having to think through bathing, tooth brushing, clothing (what to wear which side which way) shoes, finding things, making 5 trips and being distracted so going for something and coming back with not what I went for, on and on.

I shake when handing over money to cashier, if I get change back I shake trying to put it in a wallet, feel I am holding up line. Do people think I am drunk? Crazy?

I have found there are times I can not do things like that, and then it clears.

A year ago I could not make coffee for 3 days, no clue, put unground beans in cone without filter and dangerous. Then it came back. Now I can not lift boiling water so don't do it.

I read about a person who switched to all timer cooking appliances. a microwave, a crock pot, and forgot the rest. But how did he know how to set a timer? It kept him from boiling down water on stove or burning stuff in oven.

when I get help with what I need help with, life becomes easier. Having to explain makes me nervous.

I too feel so in love with tastes, the way the dog snores, rain, shadows on walls, ... never feel love to my computer though.

thanks for spelling this out, really important.