My Mum got sick at the end of October 2010. Within weeks, she was diagnosed with pancreatic cancer and had surgery that determined it was terminal. Nobody would give us an estimate of time, but when the doctor said we should just aim to get through Christmas, life exploded in front of our eyes. Since I had just left my corporate job in Belgium and my siblings were all working and had families, I went home to Toronto to be with Mum. I stayed by her side until she died in September 2011, after a journey that I will treasure forever.
I know that things would have been very different if Mum hadn't eventually accepted that she would die. Once she somehow got her head around that, we went on living. We went out shopping, went for lunch, I chauffeured her around to her friends' homes and cooked for her. What made the arrangement work so spectacularly is that Mum was responsible for one thing, and one thing only: looking after her mental state. I looked after her medications, the doctors' appointments, scheduling nurses and caregivers, greeting/turning away visitors... managing the running of her health and our home. I think this is a huge part of why she lived so long; she didn't have to think about when to take her pills, what questions to ask the doctor or picking up the phone when it rang.
I washed and dried her hair, put on her makeup, helped her shower (until we got a caregiver who took on that role -- I felt that was one way to allow her to keep some of her dignity), cooked her meals (my least-favourite part of the job!), lobbied for more care, different/more drugs, argued with the administrators who kept changing our favourite nurses' schedules, updated her wonderful palliative care doctor, called him when some new symptom popped up, took her to have almost weekly biliary bi-pass work done, and changed dressings that required more regular work than the nurses could be there to provide.
Mum hated that I had to do all this for her, but it also reassured her. We had travelled around Europe together every year, and if there was one thing Mum knew she could depend on it was that I would look after her and solve any problems that came up. I don't mean she was helpless; FAR from it. But when she travelled with me, she knew that her executive daughter who spoke two languages and managed crises as a career could resolve any challenges along the way.
We still loved to go for lunch with wine and 'retail therapy', shopping with my sisters at our favourite clothing store that, incredibly, catered to all of us. When Mum became bedridden after 9 months, her bed became an island. It's where we all hung out, updating her on family activities, celebrating birthdays and other special occasions, eating, drinking and telling stories. Having to switch to a single hospital bed from her queen-sized 'island' was a blow to our lifestyle, although I did manage to get into bed with her on a few occasions or lie curled up at her feet.
We returned to childhood pleasures: one of my favourite pastimes was reading to Mum. It started with the newspaper, then when I got an e-reader, we started Anne of Green Gables, a book that was important to both of us. Mum had given me her hard cover 'Anne' books when I was a teenager and I loved them. Mum would lie with her eyes closed, almost absorbing every word I said right into her body. She smiled at the funny parts and asked me to repeat the important parts. And when we finished the first book, we both felt like something too big to talk about had come to an end. So we started in on the second story. Other times, we'd sit and watch NCIS on DVD -- we could spend hours watching the antics of the NCIS 'family', often drinking wine and sometimes eating popcorn.
I only realised when she was gone that what we had succeeded in doing, with the help of the most incredibly caring and supportive caregivers and medical team, was to create a wonderful protective bubble around us. No one came in that had negative energy (or if they got in, they never came back!), and people we loved stayed as long as Mum had energy for them. When she couldn't manage a visit in person, she'd talk on the phone or have me call her friends and then hold the conversation through me!
We had the most loving moments together, often just holding hands and saying nothing. We got pissed off at each other sometimes -- it's inevitable when you've got two strong-minded women living together, but we never held on to our anger. We knew we didn't have time for that.
I treasure each of those moments, good and bad. Because they allowed us to say goodbye, knowing there were no regrets on either side. Because they happened with such a mutual respect and love that I miss them so badly sometimes it hurts. Because I came to understand that although we were mother and daughter, we had long since also become friends.
And when Mum's time came, I was there. We had talked about it and I'd told her I'd like to be there with her if she wanted it that way. She told me she would like me to be there. And so it was. We held hands and she kissed me goodbye, fully lucid until her dying breath.
I am so thankful for the memories I have of our almost-year living her dying together. They're like jewels I take out of a special box and polish off whenever I want to see them shine. I thank the universe for bringing us the incredible people who allowed Mum to live in her home, with her family, right to the end.
I know this isn't everyone's experience of death. But wouldn't it be wonderful if it were?