Chapter 48: Return of the Guilt Monster

Dad is still coming over every Sunday for dinner and with all of the kids’ activities and such, I usually try to get the table set for that meal after we finish breakfast.  Today, I asked the kids to help me, but that didn’t end up going to plan at all!  Without thinking, I counted out six plates for them to lay out on the placemats.  When my son brought back the sixth plate reminding me, “Mom, we’re only five now,” that set me into a mood for the rest of the day.  Ugh.  I KNOW that my mom is never going to be part of this weekly ritual ever again.  I just didn’t need the extra reminder – thanks, universe.

Dinner plates aside, though, I’ve been feeling a lot of guilt lately.  I recently met Andy Karesa, the Edmonton-based creator of a newer podcast called The Dementia Collective.  He and I had connected last spring when I signed up to be a tester for the beta version of “blueBell Connect” – an app he’s designing that enables multiple family members and other caregivers to consolidate notes, updates, and observations for a dementia patient all in one place.  Last month, after getting an email associated with the testing process, I replied asking him to delete my account since…sigh…I won’t be using it anymore.  Andy then very kindly offered to meet for coffee and a chat where we talked about our shared grief from dementia, the app, and his podcast.*

Since that meeting, I’ve been listening to his podcast religiously each week and have learned so much – primarily about all of the ways I did things wrong with mom.  It’s a weird thing to be grateful for knowledge but so resentful of all of the guilt that knowledge causes.  Specifically, that I wasn’t patient enough with mom and that I should have stopped trying to fight the diagnosis.  I suppose I always knew that, but listening to these conversations have just reinforced it.  I hate feeling so sure in the reflection that I could have…and should have…done a better job for mom.  And now she’s gone and I can’t even tell her that I’m sorry.  Well…I’m going to continue to listen to the podcast.  Maybe by learning something from all of these experts, I can help someone else down the line.

I suppose one good thing that came out of all of this is that Andy has put me in touch with a Calgary-based non-profit leader in the dementia sphere.  We had a video call earlier this week and she’s asked me to join an effort that’s going to try and bring better dementia care coordination across Alberta.  She’s convening a mix of medical professionals, health care sector leaders and caregivers like me, to bring a “lived experience” dimension to the work and strategy planning.  I’m trying to focus on the honour of being considered worthy of participation in this kind of a group, which will likely kick off in the new calendar year.  Maybe this will prove to be my belated penance.  And hopefully mom is watching me and feeling proud of what I’m doing to help others like her.  I can only hope…