Writer’s note: If you find this blog post of interest, you might want to check out a discussion on the NY Times New Old Age blog in which readers comment about communications techniques they have found helpful – a response to the article, “How Do You Keep Track of It All?”
My brothers and I look so little alike – and are so little alike – that it’s a matter of family jest. The brother who is closest to me in birth order and I once had to show our driver’s licenses to prove we were related to a woman who knew us both yet was unaware that we were related. My eldest two brothers are 15 and 10 years older than I am. The family unit they grew up in – which included a younger sister who died of leukemia in the 1950s – was a different one than the one my younger brother and I knew. It would be easy for us to have different ideas about “what to do” about our parents as they aged.
Instead, we seem to be in lock step.
Going back 15 years, when my mother’s dementia grew worse, and later, as she struggled with late stage lung cancer, my brothers and I evolved a system for communicating with one another. That system reduces stress for my Dad and makes it easier to ensure that he is getting the care he wants – and avoiding the care he doesn’t want. It also provides me with emotional support, and now it seems to be helping my brothers and I to imagine how we will be a family after my father’s eventual death.
That “system” started when my brother who is nearest in age called to suggest that we rescue Dad for a few weeks (by taking Mom on vacation) during the period when my mother had become increasingly agitated. Dad’s angina was increasing as her anger and confusion grew. Later, when my mother was eventually hospitalized and near death, our sporadic phone calls were replaced with much closer coordination by phone and email. We took turns staying with her in the hospital and took notes during our “shift”, briefing the next family member who arrived to sit by her bedside. On at least one occasion, our notes enabled us to correct what would have been a grievous medical error since her chart became so large that it was split in two – and some important information about her medication was not transferred to the active chart. When my mother came home with hospice, we tried to keep one another informed of her status as we rotated for three-to-five day stays at my folks’ house to oversee her care and my father’s recovery from his third bypass surgery.
In the past six years that Dad has lived partly with me and partly in an assisted living apartment, I’ve sent periodic “Dad Reports” to my three brothers with details about his spirits and physical health. Instead of quietly nursing resentment when I felt they weren’t doing enough to reach out to Dad via mail or email, I point blank asked them to step up their outreach to him. Our efforts were greatly enhanced by a “Presto” machine that automatically prints out emails sent to my Dad’s email address, thanks to a gift from my eldest brother.
As I have become more concerned about my Dad’s failing health, I have shared recent blog posts with my brothers, including my long rant after reading Joe Klein’s cover feature for Time magazine, “How to Die.” And it was that most recent outreach that uncorked a cascade of emails from my brothers that truly surprised and moved me. Not only were they aligned around preserving my Dad’s comfort and dignity, but they vocalized a commitment to our family unit.
My first reply came from “brother #2”:
I guess I’ll start by saying that for the past year I have been expecting a phone call from my Betsy or the staff letting me know that Dad had passed – I know that phone call is inevitable, and I know that every time I go up to provide respite for Betsy, I might be the one making that call to the rest of you. Selfishly, I don’t want that duty but if I have to be the one to make the call, I will respect Dad’s wishes. I know that he has lost everything he loved or took pleasure from in life, and has become a dependent. He can’t hear us, and I know it galls him.
Is there value in a rush to the ER? Well, the medical profession can certainly prolong a life that has become burdensome and often painful, but they cannot turn back the clock and give life in abundance. And ultimately, all the tests in the world probably won’t offer much that will give him a more abundant life.
I am conflicted by these thoughts – I like the family we have become and the strength that we siblings have found through Mom’s hospice. In many ways, I think that Dad has been the glue that bonded us all together, and I am fearful of losing more than just Dad when he passes away. But that’s not a reason to withold from Dad the end he wants.”
(Brother #2) has done a good job of capturing my thoughts and feelings on this subject. And like him, one of my worries is that Dad’s passing will dissolve the glue that has kept the four of us close as siblings. I have the longest experience of the four of us with the reality of Dad’s mortality, going back to when Mom and I drove Dad to the Navy infirmary at Pearl Harbor when he had his first heart attack. I recall well how worried Mom was that Dad wouldn’t come out of the hospital alive, but yet he did, and he has hung on tenaciously for nearly 45 more years. As much as it distresses me, his race is almost run, and he has fully earned the right to let go when he thinks the time has arrived. Like (brother #2), I wouldn’t want him to die in distress, but neither do I think it’s fair to him to prolong his life if he wishes otherwise.
It obvious that the time is drawing closer to when we will lose Dad, and as prepared as I have been for years for him to die, I still dread the reality. We have all been so incredibly lucky to have had Mom and Dad as our parents, and with Mom gone it will be even more wrenching to lose Dad as well. So, I think we should continue to dialogue about our courses of action and be available for one another. As the oldest sibling, I feel a good deal of responsibility for the three of you, even given the fact that you are all strong adults and don’t need me to look out for you. But old feelings and habits are hard to break…”