Death and Grace
When my mother learned that she had dementia less than a year ago, she said it was a “death sentence.” But now she is truly dying. She has maybe two months but no more than six months left to live, thanks to advanced colon cancer that has spread. She already has significant memory loss, but thankfully almost no pain from the cancer so far. Because of the dementia, the cancer is almost a blessing. She has lived most of her 83 years in perfect health and she has always been very clear in not wanting to be kept alive artificially. She did not want to end her life with a drawn-out period of decline and helplessness as her mother did.
The cancer diagnosis is new. Seven years ago is when I first noticed her loss of memory — early signs but they were significant to me. Mostly she was fine, but the last couple of years the decline was much greater, and she had a CT scan last spring that showed the deterioration of her brain. It was also clear that she could no longer be safe living on her own, driving, or finding her way without getting lost. This was when she made the death sentence comment. During one of our many conversations about it, I suggested that we look at it like the end of her life — since it was the end of her life as she knew it. So how would she want to spend her last days, I asked.
My husband, two daughters and I were moving to China. My mother is the person who passed her love of travel to me, taking me with her on international trips when I was still a child, and then sending me off for summers with family friends in Finland and then France when I was 11 and 12. When I asked if she wanted to join us in China, she enthusiastically agreed. In July, she flew off with us as we began our new lives in China for the next year plus. I’m not sure how many 83 year olds, with or without a dementia diagnosis, would be up for such a move. But what a gift it was.
My mother was, for the most part, very happy in China. We went to Macau our second weekend after moving, and a couple of weekends later, while my sister was visiting, we went to Hong Kong. Meanwhile, my mother’s dementia was getting worse — she asked what our home was like before this apartment and didn’t remember that she had moved with us — but she loved our walks along the waterfront and all the time spent with her granddaughters, son-in-law, and me.
My mother, husband, and I all had to get check-ups for our visas (that story is worthy of its own post) but that is where someone first raised questions about spots in my mom’s lungs. We went for follow up appointments but much was lost in translation, and she had no symptoms of any lung issues.
Once the four of us all started school and work, we needed a solution for my mother’s care and hired an absolutely lovely woman named Xiaohong to be with my mother during the weekdays. My mother liked her a lot, although sometimes she bristled at feeling like she was being constantly monitored. I would panic at the thought of my mother wandering off, but although she’d sometimes sneak out, she wouldn’t get too far or too lost without finding her way back or being found.
While I was away for a few days, my mother had what we thought was a stomach bug and stopped eating for three days. She also wanted to fly home immediately, even before I was back, and her tailspin was freaking out the rest of the family. When I got back, we promptly canceled the travel plans we had made for the five of us to go to Thailand, and instead, with the very real concern that she could die any day, especially when not eating, I booked a flight for the two of us to return to California. Once there, my brother and I moved her into an assisted living facility, and scheduled a series of doctor’s appointments that led to the discovery of the cancer.
I didn’t write this to detail these facts or her medical conditions, but rather to describe both a beautiful metamorphosis, and end-of-life transition. My mother has always had some amazing qualities, some of which I am grateful that she passed to me. I mentioned her love of travel. She was also independent, adventurous, open-minded, a great reader and writer. As a child, I was exposed to people from many different cultures and countries thanks to the friends she brought into our home. But she also had some less positive points. She wasn’t particularly maternal and she could be self-involved. She had a pretty vicious temper. But the good outweighed the bad in my childhood and we navigated that and my adulthood with a pretty strong relationship overall, with one exception. When I became a mother for the first time, I suddenly couldn’t imagine how she was the mother that she was; couldn’t imagine becoming a mother without falling in love unconditionally with one’s child; and I suddenly felt some resentment in the wake of that experience. But I recovered and as our relationship continued, her metamorphosis began. She might not have fallen in love with her children, but she did with her grandchildren. With my two daughters, she experienced a true capacity to love, to be fully present, and to give of herself completely. If she hadn’t seen them for awhile, she would call me up and tell me that she missed them and ask to come over. She’d have them over regularly for sleepovers. She’d plan her dates with them with care, doing some of the same spoiling that is the prerogative of grandparents, but mostly giving herself and her love.
As the dementia worsened she confided in my sister that she was worried my husband and I would no longer trust our children with her and she would lose the time and relationship. Since the kids were now older, we would ask them to take care of Grandma, even as she was supposedly taking care of them. It was still a beautifully symbiotic relationship.
For a decade or so longer than my children have been alive, my mother was a practicing Tibetan Buddhist. Since before then, dating back to the years of our childhood, she believed in reincarnation and regularly talked about her past lives. However, in this past year, she has exhibited a new level of grace and gratitude that led my brother-in-law to wonder if she had indeed achieved enlightenment. My mother now repeatedly thanks us all and expresses her appreciation to us and others constantly. She has apologized at times, sometimes for the occasional outburst or mean words, which she really never did before. She struggles to remember things that just happened but in her mostly constant state of being in the present, or even when reminded of the recent past, her gratitude for whoever is in front of her or whoever is being talked about is warm, authentic, and loving. Many victims of dementia can become paranoid and mean. She has had a few glimpses of these symptoms but on the whole has become a sweeter and better person, really. When the doctor delivered her cancer diagnosis, she expressed her concern for the doctor in having to give her the news, and my brother for having to hear it, but in this new selfless state, was personally fine and is facing her own mortality with perfect equanimity.
Since being back in California, she has had many friends and family members come and visit, most aware that the visits are goodbyes. In her state of grace and gratitude these visits are lovely, and she makes what could be an unpleasant experience — visiting a dying person in an assisted living home — a joy. Conversations can be limited, but her attention is fully with each person, and her warmth — and the love in both directions — almost a palpable thing.
There are so many gifts and experiences from and with my mother that I will forever treasure. It is possible that being a part of this final journey with her might be the biggest gift of all, teaching me valuable lessons about death, love, gratitude, and grace.
