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Around the time that some people start thinking about retirement, in 2007, Dave Iverson, nearing 60 and facing a recent diagnosis of Parkinson’s disease, took a step in a different direction, moving back into his childhood bedroom in Menlo Park.
His mother, Adelaide, was 95 and needed more help, so he decided to become her caregiver.
Iverson spent the next decade of his life dedicated to easing the final decade of hers, caring for her until she died in 2017 at the age of 104.
Those years presented him with transformative challenges and growth opportunities, which he chronicles in his newly released memoir, “Winter Stars: an elderly mother, an aging son, and life’s final journey.”
During that decade, there were plenty of nights he’d have to get up at least three times to help his mother use the restroom; days when her dementia left her confused and afraid; hours spent carefully tracking when medications were administered and Ensure vitamin drinks consumed.
But it was also a decade in which he created two of the most impactful films of his career in broadcast journalism, ran marathons, got married and became a grandfather.
Caregiving today
In 2020, more than 1 in 5 Americans provided care to an adult or child with special needs, according to the AARP.
Caregiving is incredibly common, Iverson said in a recent interview. “You either are a caregiver, will be a caregiver, or will be cared for,” he said.
However, it’s not often talked about or even planned for — families can be taken by surprise by all the knowledge and resources necessary to navigate what he considers a flawed elder care system.
“If you even can call it a system,” he said. “We all feel like we’re going through it on our own.”
His book is less a how-to manual than the story of his journey through the challenges of caring for an aging parent, he said.
But he does have some advice for people struggling with how to approach caregiving for an aging parent.
When it came to providing for an elderly parent, he said, one thing that actually helped him at first was his naivete. If he’d known what he was jumping into, he might have said no, he said.
There are some basic questions families should think about before they dive in to elder care, he said. They are:
Are you comfortable with bodies? Are you comfortable with doing something that you didn’t think you might ever have to do, like helping your mom in the bathroom?
Are you going to feel okay if some of the work falls on you more than some of your siblings?
How well do you do when you don’t get any sleep? (It feels different when you’re 60 rather than 30, he said.)
How will you manage the costs?
What will you do if you feel like you can’t do it anymore? Do you have a way to disengage?
Then, he added, “I think it’s worth asking yourself, despite all of those things … do I still want to do something that I know will change my life in ways I can’t even imagine, but will likely give me me an experience that may mean more to me than just about anything I’ve done?”
Care and self-care
The old saying that you can’t take care of someone else until you take care of yourself is just not true, he said. “Caregivers do it all the time, because they have to.”
Finding someone to capably substitute for a caregiver can be a pain in the neck, or very costly, he said. For friends of caregivers who want to be supportive, he advised, don’t just ask if there’s anything you can do and wait for a response. Think of something concrete you can do, and do it.
Over the years, Iverson adapted his approach to accommodate his mom’s changing view of the world, exercising his empathy muscles to try to understand what she was experiencing behind her sometimes disjointed words and memories.
Instead of repeatedly correcting his mother (a die-hard Stanford sports fan) that the game they’d just watched was not actually a win, he decided to let it go and tell her the team was undefeated. Another time, his mom said she’d gone to law school when he knew she hadn’t. Instead of correcting her, he asked her about what interested her in the law, acknowledging that she probably would have been a great lawyer.
“There’s a truth that’s different than sometimes the words that are present,” he said.
‘We need to do better’
Iverson also emphasized how, even though he experienced challenges in his caregiving work, he still had many advantages that other households providing elder care don’t.
“Caregiving, like so many other things in our society, lays bare the divisions between the haves and the have nots,” he said.
“You know, I was incredibly lucky. … I always had help,” he said. “I kept working the whole time I was with my mom. Most family caregivers don’t get to walk out the front door in the morning and not come home until nighttime.”
While initially they were able to cover costs through their combined incomes, eventually the caregiving costs grew, he said. What ultimately made long-term, high-quality elder care possible for his mother, he said, was that his parents bought their Menlo Park home in 1954 for $15,000. Because it was worth so much more in 2007, he was able to borrow against it.
That shouldn’t be the plan, he said.
“We need to do better than that as a country. We need to do better. We can’t have an elder care plan that’s basically, well, just make sure your parents bought a home in the middle of Silicon Valley in 1950 for $15,000, and then you’ll be just fine. But that’s where we are,” he said.
Caregiving also deepened his appreciation toward home caregivers and their skills, he said. Locally, he added, much of that work is done by women from the Pacific Islander community.
“They were incredible, you know. They saved me,” he said, of the in-home care providers his family hired to support their mother.
“We have such a long ways to go to honor the people who do this work,” he said. “We just need to do so much better by those people and to recognize that, sure, we want people coming to this country who have skills. But that doesn’t mean just Silicon Valley skills. That means the kind of skills it takes to take care of someone to make sure they don’t get bedsores. That takes great skill, and we need that desperately in this country.”
That starts by providing better pay to care providers, whether that’s people who care for children or seniors, he said. Expanded respite care options to give caregivers breaks can also help, he said.
Another element of caregiving reform that interests him is helping people think through detailed directives for how they want their caregivers to make medical decisions for them. It’s one thing to ask not to be intubated or resuscitated, but when his mother was ill at over 100 years old, it fell on him to weigh complicated questions about what her “quality of life” should be. That’s when things got murky, he said.
When his mother was 103 and in hospice care, even the use of antibiotics or a catheter could be considered heroic life-saving measures, and he had to carefully weigh what he felt his mother would want.
“Until she was 95, my mom was someone who would no more have wanted to spend the last years of her life bedridden, than vote Republican. But as time went on, she clung to life with the same ferocity that governed her other loyalties,” he writes in the book.
Developing more specific instructions about what one’s priorities are when it comes to end-of-life planning can be a gift to the next generation of caregivers, he said.
‘To honor those who are right in front of us’
Although the work of being a caregiver to his mother was difficult, it was also deeply meaningful, he said.
“I do believe that part of what life is about is trying to look out into the world and see what needs to be done, and to increase, if we can, the amount of caring that’s present, to honor those who are right in front of us,” he said.
“Winter Stars: an elderly mother, an aging son, and life’s final journey” is published by Light Messages Publishing and can be found on Amazon and at local bookstores including Kepler’s and Books, Inc. All royalties from the sale of the book go to the Michael J. Fox Foundation, Dance for PD and Avenidas, a Palo Alto-based nonprofit supporting older adults.