This morning I found an entry from a journal I had online dated 10/12/2012- one year and one month ago today. Little did I know when I wrote that entry that my mom would be physically gone from my world on 10/6/2013. Although I have been a journal writer my whole life - from when I could first put thoughts together through the written word, I believe anyone and everyone ought to keep a journal - especially you - reading this - the caregiver who doesn't often know one day from the next. My favorite journal to hold, touch, and write in is a big blank "art sketch book" with a spiral binding that I buy at a local arts and crafts store for about $9.00. I can fold the binding in half so it's easy to write on my lap if I want and the pages are blank (no lines) and bigger than 8.5x11 so I have plenty of room to scribble, draw, and write down everything and anything on my mind. While being my mom's caregiver, I included a lot of things in that line-free journal: our doctors' appointments, RTA rides, what we did, her medications, a movie we watched, whatever. This summer, after returning back home from a 2-month stint in the hospital with her, I included lots of other hour-by-hour detailed information every time I gave her meals through her PEG, when I changed her trach's cannula, etc. etc. etc. etc. etc. In addition to the physically tangible journal, I also write/wrote on my laptop and took countless pictures and videos of my mom.
Here's my online journal entry from 10/12/2012 when I decided to start sharing some of my thoughts online in addition to my regular, private journal entries. Here is one of the first ones online:
My mom and I often joke about all the different things I do throughout each day.
When I am flossing her teeth, I say, “I could be a professional dental hygienist!” and then we both laugh and she says, “Or you could write about being a professional dental hygienist!” The same holds true when I style her hair, pick out a beautiful and comfortable outfit for her, guide her through her therapy sessions, do the laundry, prepare the meals, administer her medications, serve as her advocate in medical settings, orchestrate social outings, sign us up for Italian language classes at the local college and watercolor classes at the local art museum. I say, “I could be a professional hairdresser…doctor…nursing assistant…event planner…stylist…shopper…therapist”
“Or, you could write about it!”
Yes, I wear many hats throughout each day. And I love every one of them. Although my mom and I already lived together and did many fun things and ventured on many trips together before she had her stroke and after my dad died in my arms in 1998, it’s “a little” different now. I am the one doing everything my mom once did for our family. I am doing the laundry, the dishes, the cooking, the coordinating of everything, the worrying about everything, and the day’s agenda for us. I’m the one who now has to slay the spider I spot on the wall.
There are several hard things I have had to learn how to do on my own since my mom had her stroke – that was one of them. If I didn’t get the spider – no one would. And I have had enough sleepless nights without having to also worry about a spider in the house. :)(or a mouse…but that’s a different story).
I have so much to share and so much to learn – I am not sure where to begin with it all. I am writing tonight to get started. Maybe this will all be deleted by tomorrow when I decide I don’t want to share so much on the internet – with strangers from all over the world – for tonight, I’ll keep it posted. Maybe as I try to continue to help and provide for my mom, I can somehow learn from others and help others, too.
Though I have not had the strength to look through or read the journals I have kept over these years - or even watch all the videos - especially the recent ones - I find comfort knowing that I have them there - I have my mom's voice recorded; I have her talking and playing Wii and laughing. I have her maneuvering her power chair and I have snapshots and handprints and videos and journal entries. And I have my memories. Unfortunately, today, ALL OF THAT COMBINED does not ease my pain or take away my grief as I mourn for my mom.