Jane Gross’ mother died in 2003 after several years of declining health. Jane and her brother spent those years moving Mom from Florida back to New York, settling her in one assisted living facility and then moving her to another, working through a number of medical problems, and finally helping their mother decide when she was ready to die.
Five years later, Ms. Gross retraced her steps through that experience. She and her brother wrote about those days from their own perspectives and feelings, and then compared notes. She tracked down the people they’d worked with during those years and those who’d known her mother. She interviewed doctors, nurses, aides, geriatric care managers, Medicare specialists, state Medicaid staff, and lawyers.
She wrote over 300 pages: as a researcher, a loving adult child, a participant, an observer, and a teacher. She realizes that she’s growing older too, and she writes about how the elder-care bureaucracy evolved during just those few years. It’s a memoir about life with her mother through the difficult final years. But it’s also a manual about navigating the healthcare system while you’re trying to take care of your parents, your family, yourself, and your career.
Ms. Gross spends about a third of the book on the deeper issues that their family confronted during those years: their mother’s quirky parenting, four decades of sibling rivalry, her mother’s anger at her body’s breakdown and the loss of elder dignity, the caregiver roles that Jane and her brother fell into (almost from temperament rather than thought), and her own personal growth as she juggled career and care.
She uses another third of the book describing the situations that other families and her friends are dealing with. Some of her mother’s nurses and aides spent eight hours a day on their job and then another 8-10 hours caring for their own parent(s). Other families coped with Alzheimer’s, cardiac decline, severe strokes, or broken hips. Care managers and geriatric doctors confronted their own burnout. Researchers and administrators talked about demographics, legal pitfalls, the Medicaid bureaucracy, and the body’s physical aging processes.
Finally she explains what she’s learned about the system, both firsthand and later through research. She describes the status quo and what’s going to change as the Boomers finish their lives. She lays out the studies and their statistics. She tells us what we need to watch out for, what she wishes she’d done differently, and what other unpleasant surprises lurk around the corners. This is the most valuable part of the book: it’s packed with advice on walking through the minefields, and the back pages are filled with support associations and websites. I took notes and added bookmarks.
Parts of the book are difficult to endure because, frankly, Ms. Gross comes across as a drama queen who rushed into situations without educating herself. It took me most of the book to appreciate that she’s making a point: when it’s your parent then you may react that way too. You may be too overwhelmed with your own family and career challenges to lovingly respond to a parent’s 10 phone calls a day. You may be too crazed to step back and thoroughly research all the options and the unexpected consequences of every decision. Events may move too quickly for you to have time to handle your own emotional turmoil. You may be too tired and burned out to handle an uncaring bureaucrat or an inattentive care provider or to cope with your parent’s tantrum.
She helped me understand how some things happen. Mom didn’t just “have a fall”. Her bladder doesn’t send reliable signals, and her body’s proprioceptors no longer help her brain’s coordination place her feet just right. Her blood pressure drops rapidly if she stands up too quickly and she has medication interactions that cause vertigo. So when she suddenly realizes she has to use the bathroom, she’s too rushed to be able to take the time to slowly stand up and begin cautiously moving. There’s no time and she won’t make it, let alone show that she can still live independently! Then her body fails her and she falls. Her arthritis keeps her from twisting to roll over and sit up. The pain is unbelievable. She’s embarrassed by her “clumsiness” and her incontinence, and then she’s worried that she’ll die and be found in this position by her children.
Other stories are eye-opening warnings about the way our society interacts. Elders in the care homes ostracized each other if they couldn’t walk or swallow, or if arthritis made it impossible to neatly eat their food. Residents fiercely competed for resources or status: whether it was finding an aide with the time to change an adult diaper during a busy part of the morning, or having a manual wheelchair needing to be pushed everywhere, or buying a cool mobility scooter with a joystick control. Depression had so many causes (changing brain chemistry and medication interactions, let alone the loss of bodily function) that took months to figure out and treat.
Read the book. We need to understand what our grandparents and parents are going through, let alone how to help them. We need to learn how to take better care of ourselves, not just each other.
“A Bittersweet Season” should be appearing in local libraries by now, especially through inter-library loans. Jane Gross has also written dozens of posts over the years for the NYT’s multi-author blog “New Old Age”.
On a personal note, the probate court has approved my father’s petitions for guardianship & conservatorship. After nine months, $10K in legal fees, and a bureaucracy designed by The Three Stooges, we can finally start handling Dad’s finances. It didn’t go smoothly but it’s over and we can refocus on Dad’s care. Dad’s finished three chemotherapy sessions for his multiple myeloma treatment and he’s handling everything well. On the other hand we’re starting to see some of the issues that Jane Gross warns us about, and I have to figure out how to discuss them with my brother without both of us getting upset.
Managing Dad’s finances will be the “easy” part, and even with a full-care facility I’m sure my brother’s feeling burnout. I’ll write up a separate lessons-learned post.
Financial lessons learned from caring for an elderly parent
More on caring for an elder’s finances
Geriatric financial management
Geriatric financial management update
NYT editorial by Jane Gross: “How Medicare Fails the Elderly”
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Great write-up, especially the physiological and psychological interactions at play – it’s like an accident investigation; a chain of events leading to the mishap. Then the people interactions – ends up being a “Lord of the Flies” situation. I saw that when visiting my Grandmas in their assisted living facilities – it was like kindergarten or first grade all over again – amazing. Looks like I need to add another book to the ‘read’ list.