My dad has had undiagnosed atypical Parkinson’s for the last 10 years. This year the shit hit the fan. He was officially diagnosed by a neurologist in January of 2018 while I was in Costa Rica teaching yoga. Since his diagnosis he experienced the transition from living independently under the supervision of my youngest brother in Anchorage, AK- to living with and being cared for full time by my aunt here in the bay area- to living in a skilled nursing facility.
This last year has been one fast ball after another. I’ve had the help of my brothers as well as random assistance from social workers etc but still my sense of lost-ness and defeat in the territory of eldercare is massive. I’ve been scrambling(medi-cal), stressed(navigating health care systems/jargon/protocols) and feeling like a failure (managing his assets).
Until I read this book I didn’t officially know about palliative care (the author is a palliative care specialist). As it turns out, I’ve been encountering the demands of palliative care while supporting my father. I searched the webpage of my father’s health care provider and found that they have have a palliative care department. It was a “if you don’t know, now you know” moment that came with complex emotions: guilt that I didn’t find out about palliative care until I was personally burnt-out in the thick of it, anger that not one doctor, nurse, social worker mentioned such a thing, and confusion as to what is it exactly and if it could still help my family.
Dr. Panitlat’s book is invaluable especially if you are at the beginning of your journey with a serious illness, particularly cancer. The majority of anectodal lessons are related through cancer patient’s experiences so I ended up skim reading some of the book. His palliative care framework gives him a sensitive, clear and honest tone while discussing painful landmark life events. For my current situation, I was most supported by two ideas in the book.
First: “seek out the best doctors and doctors that you like to work with.” This is more a hindsight thing and an encouragement to keep communicating with our doctors even it it feels clunky and unclear. We’ve been unable to pursue the best doctors and more importantly, doctors that we’d like to work with. My father’s atypical Parkinson’s was undiagnosed for so long that he made a crash landing into basically whatever care we could find.
Second: the emotional deserves as much “treatment” as the physical. I have been witnessing this first hand as my father’s mood is always boosted from physical therapy, the visits from a nearby chaplain who comes to visit him once a week and from the video messages he receives from friends and family.
The Highlight Reel
must read chapters
Chapter 7: Hope and the Mood Roller Coaster
Chapter 9: The News Goes from Bad to Worse
Chapter 10: Big Concepts, Words, and Goals
Read Part III Looking Ahead in its entirety
I like these checklists
pg 35 Interview Checklist for Doctors
pg 63 Treatment Decisions
“Serious illness, especially as it advances, is difficult. It’s a time of slowing down, when our bodies fail and fall apart. As you go through your illness, it can seem as if nothing good lies ahead and that you’re just waiting for the next setback to occur. Although many losses come with serious illness, it can also be a time of personal growth and development. It can help you focus on what you’ve accomplished and what you want to leave behind.”
I’ve previously emphasized that I don’t believe that serious illness is a gift. Serious illness is dreadful, and going through it is painful and sad. Declining health can be even worse. Good health is always better. Most people say that they would like to die in their sleep at a very old age without ever being sick. I’d like the same for myself. But for most of us, life won’t work that way. It’s more likely that we’ll live with a serious illness that may last for months, years, or even decades. That’s the norm. Given that fact, it is worth asking what good can come from your illness-to concentrate on the good, the positive, rather than the bad.
This perspective is the gift I often refer to. Ask yourself, ‘Today, in my current situation, what good could come my way?What changes could I make? What unfinished business could I finish, what broken friendships could I repair, or what wrongs could I right?’
Savor the little things, embrace special moments, and appreciate your blessings, Be open, forgive, explore, and change. Spend your time freely and generously on yourself, on those you love, on those in need, and on doing what you care about most…… Gratitude helps us feel better. You can’t feel angry and grateful at the same time. Focus on gratitude by asking yourself, “what am I grateful for today?”
-when did/do you feel most alive?
-what are the most important roles you have played in your life and why are they so important to you?
-what are your most important accomplishments and of what do you feel most proud?
-what are your hopes and dreams for your loved ones?
-what advice or words of guidance would you wish to pass along
-what does quality of life mean to me?
-what gives my life quality?
-what is most important to have in my life in order to give it quality?
-what would make me think that I no longer have a good enough quality of life?
p. 218, 220