Every day at some point, I ask myself: if Mom died tomorrow, would I be comfortable with the decisions I had made regarding her life and care. While there have been some tortuous days where I have resented the fates for forcing me to make choices I did not like making, I can honestly say that I would indeed be comfortable.
This ritual of pausing to question big, life choices started 28 years ago.
I had returned home after spending the better part of 6 weeks in an ICU. I’d had a lot of time – and morphine -- to help me think. Morphine is great for increasing creativity, decreasing fears, and boosting bravery!
I never feared losing my life, even thought statistic said there was a 90% chance I would. I was however, terrified of missing out on seeing who my kids would become and how they would experience the world. I wanted to be part of their lives. My story – our story -- wasn’t over. I wanted to be more involved in – ok, let’s be honest, I wanted to be more in charge of - writing the narrative.
I realized that the world moved on without me
During the weeks and months when I was sick and then healing, the sun had the audacity to rise and set each day, Tom went to work, family cared lovingly for my kids. Many choices were made on my behalf during my absence and, shockingly, everyone was fine. There were likely different outcomes than if I had made the decisions, but my family and friends did what they thought was best and all was good in the world.
I was happy and thankful during this time. I was also hyper aware that the choices we make everyday can have a profound impact on the direction our lives take and the quality of life we experience. I didn’t want to be fine, I wanted more. I wanted my life – our lives – to be exciting, fulfilling, joyful, brilliant and beautiful. So, I began the ritual of reflecting on the choices I’d made each day and how I could make sure I didn’t regret any decision or waste any of the time I felt had been gifted to me.
Today, that daily reflection on the life decisions focusses mostly on Mom.
That critical question – if it all ended today, would I be comfortable with the choices I made -- has helped shape how I have cared for Mom. The questions have been endless and many of them were life-changing....
is it time to sell her home?
do we risk going to the dentist which requires prophylactic antibiotics that generally result in another cognitive decline?
should we agree to surgery to replace her aortic valve and extend her life?
when do we admit that it's time for long term care and how do we choose the best place?
I think some people believe my commitment to Mom as she moves through the later stages of dementia, is a form of martyrdom. I disagree. As difficult as some days are, there is beauty in each one of them. I love the time we share and look forward to seeing her. I’m never sure who I will get. My favourite days usually include Mom saying something beautiful at a most unexpected time. I used to wish I could will those moments to happen so I would be prepared when they arrived. Now I just accept them and embrace each special moment.
One day, not too long ago, as we were driving to some appointment, Mom commented on how much she appreciated the time I spent with her. She said, you're giving up so much of your life for me. I looked at her, the woman who spent years of her life driving me, my brother and sister to so many piano lessons, tennis tournaments, hockey games, theater performances, gymnastics practices, and did research on finding us “the best” teachers and said, Mom, I don't think I'm getting anywhere close to paying back the number of times you drove me to activities or sat in the stands cheering me on. She looked right back at me and said with what seemed great pride and humility.....
“I always felt it was my privilege”.
I think that sums up Mom's character. She was always an attentive, loving and strategic parent and friend. She is kind and wants the best for everyone. She believes those she knows and loves are extraordinary. She believed so strongly in our character and abilities that we couldn't help but believe in ourselves.
Thinking back on that recent car ride, I have to echo back that caring for her now, for however long it may be, is my privilege. I am so grateful for our time together.
Lessons Learned
Every decision you make that is based on the best interests of your loved one, will be a good decision.
When you are unsure or uncomfortable making a decision about care, wait a day – or 6. The world will keep going until you get the information you need to make the decision you feel comfortable with.
Most of us are amateur advocates and that’s ok. Our decisions are not written in stone and it is more than ok to reevaluate and make changes, if and when needed.
Don’t waste time on regrets. Make thoughtful, compassionate decisions day by day. These will pave a path that you can confidently walk along and reflect back on.