Mom making dementia/ALZ assessment spreadsheets
My mom, (mild-mod ALZ), (AL w/no leveled support) loves making spreadsheets on Google Sheets. I have access to her acct and review it daily to see what she is up to. She makes lots of lists and writes letters to companies and friends and it is a good look into what she's thinking. One spreadsheet she makes is copying and pasting a dementia/ALZ assessment. She has made dozens and dozens of these over the last 3 years. Sometimes she prints them out and mails them to me (as though she has never done it before). Sometimes she will rate herself. It is important to understand no one ever discusses her diagnosis to her, but she knows she has one, and denies it all the time, even though we don't say anything about it, and we've never filled it out. One time she handed it to me in person and asked me to review it with her (she was angry), so I gently started, and she took it away and didn't want to do it anymore.
But she has restrictions, like not being allowed to leave the building without a family member, and it triggers her. I assume she makes these out of fear or worry. I opened up her Google Drive and found another one this morning, made yesterday afternoon. I just ignore it, but it is heartbreaking that it is on her mind.
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I'm sorry pjasso, that is tough as can be. My mom made endless lists of dates, especially family birthdays, saved all kinds of coupons, and was reviewing apartments on line back when she could do the internet--I guess in anticipation of making a move. If I found something that might be triggering her I'd remove it. I didn't want to have triggering things sitting out on her desktop or in her emails that she'd eventually open and have it launch her in to a bad mood. Some subjects she never returned to, some she did. It's so difficult to see them trying so hard.
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It is so hard when we get a window into their struggles. When we were looking for some important papers in mom's house before she moved to AL, we came across a box of old magazines and newspapers. They were all folded open to articles about Alzheimers, with relevant passages underlined. The articles dated back to 2006! It was heartbreaking to realize that she'd been aware of her cognitive decline for 15 years by then and had suffered in silence. We were clueless.
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This must be heartbreaking for you both.
It's interesting that she still has that level of self-awareness. That said, creating an error-free spreadsheet would be really difficult for a PWD. Are you sure she didn't just copy it?
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She did copy/paste the text, but my mom was a very skilled Excel user, then a few years ago, at the very onset of cognition decline, I showed her how to use Sheets in Google, because I lived 3 hours away and I could help her if I had access and shared her Drive. Now I have MS Office removed from her computer, and she makes spreadsheets every day! She makes lists, and check lists over and over. She goes onto the internet and copies and pastes the ALZ assessment stuff, unless she finds an old file and copies it moves into her recents. She has lots of them! Her skills are definitely less, but she keeps making spreadsheets.
Also- since she is on the internet on ALZ sites it now populates her email, and so just reminds her about ALZ. Her sister died of ALZ years ago and we had a lovely visit with her about 20 years ago but she did not recognize my mom. My mom has a really cute picture of that day, but refuses to bring it out of a drawer. I'm sure it scares her. So yes, she has a self awareness still . . . .0 -
Wow! This brings back feelings. My mom would have Post-it notes and calendar notes, clippings, and she'd keep stuff under her placemat at the kitchen table. It's easy to put ourselves in their position because they act as if, and may even believe that, they are operating normally and everyone else is gaslighting them or overreacting to them. Memory diseases are diabolical. I can totally relate to your mom asking for the assessment and then being angry when it's addressed. Good luck to you with your mom. I was grateful, on one level, that she would wake up not remembering that she had any issues.
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When mom was first diagnosed she wanted to learn more about dementia, so I printed out some information for her. Three months later she said I was trying to keep thing’s about dementia a secret and demanded I take her to the library for books(she forgot about the print outs). A few months later she found a you tube video about someone who had dementia and had written a book (I suspect it was mci or she had a lot of help with the book). Mom said if someone can write a book when they have dementia there was no reason she couldn’t live in her home alone. Months later she started in again telling me no one had told her anything about dementia and she had a right to know. Said it wasn’t right that I keep information from her. At some point she decided the doctors didn’t know what they were doing when they diagnosed her and she now believes there is nothing wrong with her. She believes have put her in a nursing home just to be controlling and get rid of her. It’s heartbreaking.
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It's incredibly sad, @H1235 and @pjasso. Seeing LOs with dementia struggling to make sense of what is happening to them as they try to cope with cognitive decline. We're on the outside looking in through a clear window - observing the behavioural changes. They are on the inside looking out through a hazy window - confused by a world that no longer makes sense to them.
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My mom has little paper notes everywhere with reminders. When I visit, I pocket any "reminders" that are harmful to her, like calling her financial advisor asking for large sums of money. A lot of her reminders are to make calls to companies, to Xfinity to add programs (she doesn't know how to toggle HDMI to stream), to HP asking why her printer/scanner doesn't work (user issues), and more. Then she piles the little notes and types them into spreadsheets. Her NOTES on her iPhone has a huge list of reminders. It is a window into her thinking for me.
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Yes! these are the nature of the notes I found too. I appreciate you sharing and reminding me. It was a tough time but also a time I treasure being able to be with her.
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I've become very adept at just quickly slipping the notes in my back pocket- I'd get home with a bulging pocket. I can't throw them away!! I have a bag full of her notes at my house. It's something about "throwing something away that isn't mine", plus it's a reminder to me how many there are.
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If I could go back, I would have gathered them up and used them in an art piece commemorating this time. Or maybe have a personal ceremony and burn them with a prayer that she may have peace of mind at this time. I have one voicemail saved on my phone from my mom. I wish I had more. The one voicemail is of her sounding very frustrated and not understanding why I had left her at my brother's house for the afternoon (he was her caregiver for the day while he also worked from home). I treasure it even though…
I like how you are getting to see what she's looping about and you can help her solve any of those issues. Not that she'll remember. :/
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I'm sorry for your loss. I can't yet imagine . . . My mom is a super pysicially healthy 90 year old, with progressing, but slowly mid-mod ALZ. I expect her to live a very long time, which we are grateful for now, but I fear her body will far outlive her mind. Right now, she is in the stage of trying to do and recreate what is in her mind saying she "always did that."
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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