I wasn't with my father when he died. He died the morning of July 22, 2019, my birthday. When we got the call from the nursing home that morning I was angry that they took that one final thing away from us, the opportunity to be with him in his final moments. All of his suffering that we had experienced with him and it just felt like we had walked away and left him to die alone in a gloomy, unkempt, impersonal room. I live with the guilt of this every day even though I know I don't have to.
Life isn't perfect and neither is death. As much as we want to mark that final moment of someone's life to show them how much they meant to us, the Universe may have other plans.
Death, grief, loss are not things our culture is accustomed to talking about. But we suffer unnecessarily so by not talking about it. At the end of last year, I listened to NPR host Terry Gross interview BJ Miller, MD a hospice and palliative medicine physician. One thing he said that really resonated with me was this, "...the health care system was designed with diseases, not people, at its core." After the grueling years of playing my father's healthcare advocate in a flawed and failing system, hearing that coming from someone inside the system helped. It also inspired me to want to do something about it, something simple such as sharing this wonderfully written and informative book, that Miller co-wrote with Shoshana Berger, with everyone who is a caregiver currently or will be in the future, and anyone who knows they need to think about their own death and planning for it one day, which is pretty much all of us. This is one lottery ticket we all get to cash in on because whether you choose to believe it right now or not, death makes no exceptions and has no favorites. The process of dying can require as much effort as living, it's amazing Miller and Berger managed to distill it all down into just 504 pages.
There is something for everyone in this book. The information is broken down into five main categories: Planning ahead, dealing with illness, help along the way, when death is close and after. Not only does it cover in easy to understand language the nitty gritty of things, it also talks about the emotional side of all of these aspects, something we need to get comfortable discussing more with our loved ones so they know how to support us when our time comes. There are special breakout sections specifically for caregivers in many of the chapters and a 22-page section at the end of incredible resources ranging from where to find important documents like advance directive forms for your state, to organizations and games created to breach the topic of death, a host of on-line listings for caregiver support groups and services, to how to close down social media accounts once a loved one has died.
I specifically found the chapter on hospice and palliative care and the described distinctions valuable. Many families, like mine, wait too long to consider these options solely because we are not informed. Get informed, ask your medical team early on, research what resources might be available to you in your city. When I recently Googled palliative care doctors in my city, two names came up. One was the doctor we switched my father to when we had him admitted to the nursing home for the last time and whom I was only able to talk to directly once and who never gave us any guidance or suggested a treatment plan to make my father more comfortable in his end-of-life condition. I couldn't even get the staff at the nursing home to track him down to sign the death certificate. The other was the internist at the hospital where we took my father for the last time when he developed pneumonia and who was the only doctor in town who heard me and saw my father's suffering and helped us get him on the course to hospice. My father passed less than two weeks later.
"Think about hospice early on, earlier than you or your doctor might otherwise consider appropriate. Most of the time, people wait unnecessarily long to enroll in hospice, too late to receive all its benefits. In 2014, 45 percent of Americans (roughly 1.7 million) who died did so on hospice--a number on the rise since inception of the hospice benefit. Since hospice is acknowledged as the gold standard of end-of-life care, this growth is a good thing. But the average time a person spent on hospice was just over two months. Half were only on hospice 18 days, and one-third were enrolled for a week or less before they died. For some situations, a short stay is just right. But more commonly it just means people are suffering more than they need to. Don't wait for your doctor to bring it up. Ask about it." - A Beginner's Guide to the End, BJ Miller, MD and Shoshana Berger
Now that my father is gone, I've used it as an opportunity to allow it to open the door to conversation with my mother about her wishes. Over the years she has refused to help us get these things down in writing and it has been a stressor as a child to have to anticipate and plan and hope we "get it right." This book has given me a few great ideas to help with this and I know in good time it will all get sorted. Right now my mother's grief is silent. I know she misses my father but she is working through it in her own way and I understand I need to allow her to do that. For me, my grief is co-mingled with so many other things, but thank God for therapy, right? Do yourself a favor and pick up this book. Life is full of so many joys and dying can be too if we take the time now to welcome it into our conversations and prepare ourselves and our families for it.