Follow
Share

Years ago I kept track of thoughts, ‘to-do’ lists from parents, their hospital admissions and discharge info. It helped retain sanity in making sure I had done certain things, and the result. I carried a notebook with me. Follow-up on paper became difficult; I wondered if electronic would be a better way to go if for no other reason than to edit as needed. I read through it few years later - same old same old repeated with just names, dates and places changing. Thanks to this Forum, I realized I was an enabler with a hard learning curve! I eventually destroyed the notebook.
As I’m traveling this caregiving path again, now with hubs. I sense a need to keep track of the odd comments made, things that happen that may need to be documented for discussions with health care professionals, etc. SLUMS test was given recently. Yes there are many options available. If you kept a caregiving journal or diary, what format did you use and what worked best for you?
Under topics, not finding one that fits this issue and can only pick one so I used family caregiver.

I just bought a pretty book at Dollar general, that says on the front , better tomorrows, and has pretty flowers all over it. It was only 5$

I think writing is better, because in life we don't need to actually write that often, now with the computer age, social media, and all that.

I think if it's not something we do often, that's when we should be doing it.

Anyways, it mostly to write about my year, and my journey, my mom, vent my frustration, and my new friends here.
Helpful Answer (3)
Reply to Anxietynacy
Report

I used a 5x7 calendar and wrote short notes in it. Mostly things like "neurologist 10am" or "fell - no hospital" or "fell - hit head - ER" or "changed mind about XYZ". Also I wrote things like big purchases like "New recliner $XXX". Just things so that I could remember what happened when and so that my husband and I would have a rough timeline of his cognitive decline/dementia. For that entry I literally wrote "Neurologist - Mini Mental Score X = dementia".
Helpful Answer (3)
Reply to NYDaughterInLaw
Report

I kept a diary, hand written, no tearouts (composition book), written in ink with cross outs and no erasers. These are admissible in court if ever needed.
I also kept a running diary of assets in and assets out of his assets/accounts. MOnthly copy to him and for me. I also keep a running list of tests done, date and result. I also kept files for all bills I paid, with receipts, copies of bills, checks sent.

You got it. I am a bit OCD and I did total overkill.
I recently read my diaries, and while sad, they were sure interesting. It's 5 years next May, since D's death, and I will bury them in a dumpster when that comes. Tough times.
Helpful Answer (2)
Reply to AlvaDeer
Report
Anxietynacy Sep 26, 2024
Alva I do need to start journaling again. I journal them I though it away, after a while.

I'll reread what I wrote, and think , well that was stupid, and bury it in the garage.
(0)
Report
See 1 more reply
I was taking my parents to the doctor , ordering their meds for years . My Dad at one point had about a dozen doctors , Mom not as many . I had a LARGE appointment calendar , the size of a standard 9X 12 sized notebook , that I would write things down to address with the corresponding doctor on the next visit . I sometimes would bring up somethlng to multiple doctors so they were aware of a change , as they did not seem to always read each other’s progress notes . So that issue I would write under more than one appointment .

For example , the cardiologist didn’t pay attention to what the nephrologist recommended . The cardiologist needed to be reminded that Dad had kidneys , as he seemed so bent on getting Dads heart to last . The nephrologist decreased the dose of his BP med to spare his kidneys. A more moderate approach was needed to keep the kidneys working as well as his heart .
Helpful Answer (2)
Reply to waytomisery
Report

Currently caring for hubby as his nurse (I am a RN) while he recovers from surgery. I opt for more of a journal/chart format. I write times and meds given in more of a chart format. I note symptoms with date and time in more of a journal format. This helped when he developed severe allergy to wound adhesive and to track pain management. You should probably also document "fun things" too: conversations, comments, activities... so you have memories to smile on later in this journey. Just make sure to not get caught up in journaling so much that you forget to just live and enjoy life.
Helpful Answer (2)
Reply to Taarna
Report

JLyn69: When I had to move in with my mother from out of state due to her being adamant and stubborn to stay in her home, I kept a hand written composition book. Doing so kept me from completely losing my mind.
Helpful Answer (1)
Reply to Llamalover47
Report

You could video whatever seems relevant with your phone. A video diary might be easier and less time consuming for you.
Helpful Answer (0)
Reply to Fawnby
Report

I’ve been adding brief notes to my calendar on the phone and iPad. I’ll probably need more space later but right now it’s working pretty well. It does help to document the odd behaviors and looking at a whole month at a time is useful to see patterns as they relate to other things like med changes and illnesses, etc.

My SIL kept hand written diaries more like AlvaDeer. She shared them with me after her DH passed from Parkinson’s dementia. I found them devastating to read but they were somehow comforting to her after his death.

Video is a great idea too but I never seem to have my phone in my hand at the right moment. Maybe later when the weird behaviors become more the rule than the exception.
Helpful Answer (0)
Reply to Peasuep
Report

I keep a record of pertinent information on my calendar. I'm very busy and if I kept a diary if would just say:

September 30, 2024: Crappy
September 30, 2024: Crappy
October 1, 2024: Crappy
October 2, 2024: Crappy

Guess what my diary would say on October 3rd?
Good guess!
Helpful Answer (0)
Reply to LostinPlace
Report
LostinPlace Oct 4, 2024
Please disregard my previous downer post. I think I have temporary PTSD from Hurricane Helene...

Sincerely,
Lost
(0)
Report
See 1 more reply
Well, this is a new and interesting question.
I design forms ... keep daily records of calls (time, date)

While I do use KEEP NOTES in my android cell phone ... and folders in it, I wouldn't suggest that to track daily or regular ongoing notations of health / behavior changes ... UNLESS you have cloud and everything is transferred over for safekeeping.

For my clients, I would provide visit assessments ... of behavior changes. The family contact would take my notes to the MD / medical provider to show changes. It was a very useful tracking.

I am old (and) old fashion. I like REAL paper and pens. I then often type up and print out at home.

You can get little bitty notebooks ... 3 x 4 inches or so.
Then you can make a copy on your printer.
And, type them out to keep in a binder.

I do not like to type on my phone as I type too fast and can't do that using a text or cell phone application.

Do what works. Have a backup as needed.
And ... I learned to backup / keep a hard copy of cell phone numbers ... after losing my last phone. It is a b--tch to lose all that information.

Perhaps you have an option to plug your cell phone into your computer (on your desk-top) and transfer information ... but it seems like the cloud is the way to go (I hate the cloud). I like the old days when I used Word Perfect and could make macros instantaneously. Gena
Helpful Answer (0)
Reply to TouchMatters
Report

Ask a Question
Subscribe to
Our Newsletter