Keeping a list , documenting the journey

Victoriaredux

I posted something like this a few years ago—- it will help you to start keeping a list of things your LO does that shows they aren't able to function like before. Littler stuff like putting the milk away in cabinet next to cereal box. Kinda makes sense , but….

Big stuff like saying they haven't eaten - while the third bite is on it's way to their mouth. Going out to get the mail and it disappears between the box and the house never to be seen again. [Get USPS Informed delivery service so you'll know what you should get ]

In the early days they may seem like one offs , "they were tired" , "well we'll all aging' . But it is a progressive disease.

Why a list?— will help with Doctor visits or hopefully never , a court case.

Most importantly it will help you if/when they need placement or you need to bring help in and you question yourself —"Was it so so bad? Maybe they can come home/I can go it alone ?"

Having that list to read will bring back the anguish and frustration you felt. A reality check. Yeah it was bad.

We are hopeful us humans and this disease family is a real downer. Getting the safest care for them and taking care of you is paramount. Never any guilt .

Carl46

That's a great idea. The disease progresses so slowly that we tend to forget that things like forgetting to raise the lid on the toilet aren't normal.

aconite

my DH's doctors have told me they find this very helpful. I usually do blocks of notes by month as his disease progresses. I try to make notes when the behaviors are different in kind. That is, I noted when he could no longer find the cereal bowls, but did not make another note when he couldn't find the silverware. Just noted that similar behaviors had become more common. That kept the doc to a more manageable size. I usually just print out the doc since the time of the last visit since the docs say they keep these notes in his file.

AlzWife2023

Such a coincidence that you posted this today because last night or this morning (can’t remember when!) I went back to my first post on here & it feels sooooooo long ago yet it was less than two years. It was helpful to evidence of progression. I have not kept a list but I staged him at 4/5 and now he’s pretty much 6.
I’m not sure what he could do then that he can’t do now, but it seems like he cabt really complete any tasks. He did all the dishes two days ago and it’s been months since he accomplished that. He usually stops and gives up or doesn’t start them at all. So I guess he’s lost that ability. It was his biggest chore for the 35 years we’ve been together.

harshedbuzz

A good reminder @Victoriaredux

Dad was diagnosed with dementia in 2016 although I saw personality changes as early as 2005 and significant memory loss and confabulation by 2008. Alas, mom blew off my concerns until she nearly died with him as her medical advocate. Any suggestion of a screening was met with "It's a normal part of the aging process".

Mom's on my radar now. It's tricky. If she is having a cognitive shift, it looks very different than dad's did as they were polar opposites. She has wicked ADHD (a real out-of-the-box creative all her life) so her baseline of executive function, impulsivity and filter has never been typical. She has CHF and COPD, an exacerbation of either than impacts her O2 levels can really impact her thought and behavior and two UTIs in the last year drove me to take her to the ER with symptoms of "Altered Mental State". Even that she changes up, the first UTI her BP was 215/105 and she was combative; the second time a mere 6 months later she was so weak I had to prop her up to get her into the building and her BP was 87/55.

She was very squirrelly last spring. I contacted her PCP who ran the bloodwork, ordered an MRI and did a quick MMSE (she did fine, but so did dad until about a year before he died) in office. The Lyme disease test was positive and her memory and thinking improved somewhat but I still have concerns. I'm on the wait list to be scheduled for the memory center but am in no great hurry. At the moment I'm mostly seeing increasing word finding issues and occasional confusion. Saturday she was convinced her new freezer might overheat in the garage if opened and cause a fire/explosion of canister O2. And yet she was happy to send me out to check it.

HB

HollyBerry

Yes! I have a spreadsheet that I add to periodically. The rows correspond to the ADLs and IADLs, with more rows added for examples as needed. Columns by date. The doc has gotten really big but it's helpful to look back over time. I try to check the staging instrument so I have an idea of what to record that would be relevant if I needed to talk to a provider about progression.

A shared google doc can be a way for family members to keep track of things and communicate with each other, too. My friend and her sister try to add info to a shared phone log after they talk to their parents, so they both know what's going on and can compare notes on what their mother told them this week. I wish my brother and I had done that.

Arrowhead

About 6 months after my wife was diagnosed, I started keeping a journal and a spreadsheet on her progress. That was 8 years ago. There was little to record in the earlier stages, a lot more later on, and now I'm back to having little to record. I'm hoping that, if I should ever get dementia, it will help my children understand what to expect.