India posts will resume tomorrow. Meanwhile, this is absolutely worth knowing about.
I hadn’t seen my father in more than a year. While it’s true I lived 3,000 miles away, it was also true that he lived in a facility for Alzheimer victims (and yes, they ARE victims) and the last time I’d visited he wasn’t sure who I was at first. But this time, I was bringing the man I loved to meet my only living parent.
A nurse buzzed us through the locked doors and we walked down the hall to my father’s room. Outside his room was a memory box of photos–my parents’ wedding, the three children as kids, the kind of thing meant to jog a shredded memory. “Yes, I live here, these are my people.” I wondered how effective it was.
I entered the room and saw a man sitting in my father’s easy chair. He was heavy and bloated beyond recognition. Could this be my father, who worked out two hours a day every single day and who took great pride in his slim, muscular physique? Who injured his rotocuff at the gym doing too many pullups at age 70 showing off his abilities for far younger men? Who jogged 1o miles a day before it was trendy? He looked semi-conscious and so heavy that he couldn’t even get out of the chair.
I went over to hug and greet him. He could barely speak and neither could I.
This couldn’t be my father. MY father was a physician, a sharp diagnostician in his pediatric practice, a man who read immunology journals for fun. My father could dominate a discussion with his strong opinions and loud voice. My father joked with kids about carrots growing out of their ears.
This man? I didn’t know him.
I looked at my boyfriend through my tears. “But this wasn’t what he was like!” He pressed my hand. No, he’d never know the man that was my father. That man was long gone.
These were my thoughts as I read the excellent memoir, Entering the Blue Stone by Molly Best Tinsley, about her parents’ last years and if you read no other book this coming year, make it hers. Several reasons. If you’re helping your parents through their end of life stages, her experience will help you navigate it in the best interests of your folks and your own sanity. And if you’re getting up there in years, yourself, her experience illustrates why you should make your own end-of-life wishes known while you still can. I’m someone who wants to avoid that like the plague, but this book helped me face decisions that M. and I need to make together. (Thanks, Molly, for providing the book to me.)
Ok, about the book. Her parents–sharp, interesting, fun — ended up in a continuing care facility. These facilities seem to make sense–the aged can progress from independent living to assisted living to nursing home care as the years go by. But a facility must be carefully chosen and a watchful eye kept over care decisions–and care itself.
Tinsley writes dispassionately about growing issues with her parents’ condition and care. I noticed that lack of emotion right away and wondered. But by the time I finished the book, I saw the power in the distance the author placed between herself and the story. Many stories about lives ending in nursing homes are difficult to read. In fact, I won’t read them. But this book is different. The things that happened were awful–but Tinsley let the story tell itself and in that way, it made more of an impact on me. I saw clearly some of the decisions I need to make now for myself, and also where we went wrong with my father’s care. I hope others will read this book and inform themselves so they can be more informed assistants in their parents’ end of life. Or their own.
So here’s what I learned:
The elder care system in the U.S. is seriously flawed and family must be heavily involved every step of the way. Every single step, including overseeing the meds given–and often. There seems to be no such thing as too little involvement.
Most of us don’t know much about the end-of-life process–I know that I’ve been reluctant to confront it. But if we don’t, we could end up victims of this flawed system. In telling her parents’ story, Tinsley teaches us the things we need to know about how we can leave the world with, I hope, I bit more dignity.
Available at all the usual places, but why not buy directly from boutique press Fuze Publishing, that ships free instead of the behemoth online place we usually buy our books? Help support independents, because Amazon has declared war on publishing.