I’m not one to make a journal about anything. I tried years ago to do so but that didn’t last long.
After reading various posts on here it seems it would help me in the long run to start, and keep up with, a journal about my wife and her dementia.
What information do you list? I know it’s not to be a minute by minute report but I don’t want to not list something.
Do I take it to doctor appts with us? Email copies ahead of time?
Thank you in advance for your replies!
If you want to record your wife's transition, I think I'd first identify the symptoms, and the extent of them. I.e. does she forget things....minor, or major, and how frequently. That might help chart her progress and establish a baseline.
What about personal care? Household activities? Is she still able to care for herself? Noting when this changes could be helpful to her medical team. Same with household activities, which reminds me of the movie shown when I took the Alzheimer's Creating Confident Caregivers' course.
The movie was in stages, first showing a few women in a care facility, and how well they could make a sandwich. As time progressed, change was shown by inability or confusion to (i) understand instructions or (ii) know which foods and silverware should be used. By the end of the film, the women couldn't understand either the purpose, or the foods, or the function. That was when the class was battling tears.
Ability to recognize family and friends is important as well.
I think what you might want to focus on are the initial status quo, the changes (how significant, repetitive, etc.) and loss of cognizance and/or ability. They can establish milestone.
I didn't necessarily take notes to medical appointments; by then the doctors and their staff knew me, so I just called them to give private information I thought was necessary.
If you do want to take your notes/journals to medical appointments, I would in fact e-mail ahead of time if you don't want to discuss any of the issues with your wife present, and if doing so would upset her.
I did take notes during visits, and more extensive ones during hospitalizations.
I wish you and your wife as safe, peaceful, calm, and medically supportive a journey as possible.
Basically, what I put in there is what I don't want to forget, because eventually days and weeks start running into each other. If the hospice nurse calls, I write a general summary of her update, but if I'm the one visiting Mom, I just write a few lines of what I notice.
For example, I saw my mom today without a nurse there, so my entry would say -- "7/18 -- Spent two hours w/ Mom, caregiver gave her an entire Glucerna via syringe. Mom slept the whole time, but seems peaceful and relaxed. No signs of pain."
Last week we decided to stop all of Mom's medications except for comfort care, so that entry was a bit more detailed.
I always advise sending an email to the doctor in advance of an appointment in order to give him time to prepare and not waste appointment time going over the backstory, so to speak. If you can send it five business days in advance, even better.
One side is practical: what happens when, where, why and how. That might include doctors appointments, changes in her attitudes, capabilities and needs and other people with more experience in dementia caregiving would know more about that kind of content than I. Documenting those details may be enough - or more than enough, depending on your comfort writing and what’s going on in your world.
Another side is the emotional story. You may start journaling practical details, but allow your mind the freedom to include reflections and memories and raw emotions that need a safe harbor.
Your entries might be a list or a paragraph or more … or just one word.
By the way, if you’re on a computer for a length of time, wear blue light blocking eyeglasses. Makes writing easier when you’re not dealing with eye strain,
Good luck.
Peace is paramount, and assured (if only briefly), knowing that you can refer back any time as required to pick up the gauntlet of life's trials.
Aside from the plethora of appointments and deadlines, I find it helpful to express my own state of mind (frustration, annoyance, hopelessness), partly to lessen risk of transference, but also to recognise irrationality when reflecting on thoughts written under duress.
Another attribute is "What if something goes wrong or I am not around to update/explain the situation?".
In this regard, I can feel confident knowing my actions can be retraced to find any oversights (hopefully without judgement), or allow my predecessor to have an accurate history of the 'client'.
Jokingly, I refer to my journal as 'exhibit A' to keep me on the straight and narrow! - accountability does not necessarily imply perfection.
If you are computer savvy, a simple calendar program can allow you to categorise entries (making sorting easier) to whatever suits your preferences. Otherwise the 'oldskool' calendar diary (a page to a day) will do just fine.
Importantly, try not to see this as 'creative writing' or a memoir. The cold hard facts in real time will tell its own story.
My thanks also to Erikka and Kantankorus for your replies.
To be honest, I forgot I had asked about making a journal. I was reading through the posts a few minutes ago and saw one about a journal. That sounds interesting, I thought. Oh! I asked that, huh? Guess I need to start “journaling” my posts.
You each have given me things to think about when I start writing stuff down. So thanks again!
Falls, trips, stumbles
Mood
Changes in speech/vision/mobility
Bowel habit
Urine output if you have any concerns, I wouldn't bother if there are no issues.
The reason for bothering is that the day will come when somebody with a checklist says "has your wife had any falls recently?" and your mind will skitter around the hair-raising near misses and incidents that you remember, leaving you absolutely unable to put a figure or a timeline on it. Aha! - but you will reach for your journal, flick through the last month, and say "two falls, a near miss and rising from 2 to 8 stumbles per day over the last four weeks."
PS a near miss is a fall that is prevented by something harmless, e.g. the bed, or you. A stumble is a potential fall that is prevented/corrected by the person without anyone else's assistance.
One thing to go in my journal has to do with my wife dressing herself. She does well 85% of the time. She was getting dressed for a doctor appointments one day and called me back to the bedroom to put on her socks. Oh yeah, she was dresses alright. Pants on, blouse on and bra on over her blouse! We got a chuckle out of that.
The doctor then could ask a question w/o my parent knowing that the concern came from me. Dad wouldn't know that I was involved with whatever observation or concern I had, unless it was something that Dad and I had discussed and both shared a concern.