About a year ago I moved my family of four in with my aging parents, and joined my mom in taking care of my dad, who has advanced frontal lobe dementia. I also joined 26 million other Americans who are sandwich generation caregivers — constantly juggling the needs of an 8-year-old, an 11-year-old, a career and my 76-year-old dad, who can never be left alone. Luckily my big brother also moved his family a few blocks away and has joined in the caregiving, so we are a ragtag village of five adults raising four beautiful, weird kids and tending lovingly to the demise of my dad.
Given our situation, you can imagine how we shuddered when we heard about the tragic isolation and fate of actor Gene Hackman and his wife, Betsy Arakawa, who were found dead recently in their home. An investigation by local authorities in New Mexico concluded that Arakawa died of a rare respiratory disease around seven days before her husband, who died from complications of being left alone for a week with Alzheimer’s disease.
In the wake of this tragedy, Emma Heming Willis, the primary carer for her husband, the actor Bruce Willis, who is suffering from dementia, took to Instagram and said, among other things: “Caregivers need care, too.” She added that “it is so important that we show up for them so that they can continue to show up for their person.”
But what does it actually mean to “show up for” family caregivers?
Living in a loving community of friends and neighbors that recognize your dedication and struggles as a caregiver is certainly part of the answer, ideally. Steady deliveries of homemade aromatic dahl and gooey vegetarian lasagna and tart lemon bars from friends have kept our family going. When one irate neighbor knocked on our door and yelled at my mom about my dad wandering onto their lawn, the rest of our neighbors rallied around us and said they saw our heartfelt, if imperfect, efforts to keep him safe and welcomed his innocent intrusions. Thankfully the family picnic he crashed in our local park was also received with grace; he went home with a ciabatta sandwich clutched in his hand and a big smile on his face, and the kind family who tolerated his confusion made our day infinitely easier with their kindness.
But even this — the meal trains and the neighborly grace — are not enough, and many caregivers don’t have the good fortune to have such networks.
Family caregivers need us to show up for them through structural investment in formal elder care, especially day programs for people with Alzheimer’s and dementia. There are 7 million Americans who have Alzheimer’s and about twice that many family caregivers. The lifetime risk for Alzheimer’s at age 45 is 1 in 5 for women and 1 in 10 for men.
Just as there are child-care deserts all over America, there are elder-care deserts, too. In California, where we live, Medi-Cal (California’s Medicaid program) recipients residing in 32 counties have no access to these kinds of day programs. In fact, the number of day programs in the state peaked at 366, back in 2004 — when there were significantly fewer elders in America.
For a brief period my dad attended a day program in the Bay Area, where we live. We’d drop him off in the morning and he’d wander in to get a cup of instant coffee. While I got a full day’s work done, and my mom recovered from (usually) a horrible night’s sleep, my dad sang karaoke (Beatles and Stevie Wonder were his go-to’s) and did chair yoga. It was a game changer for our family: affordable, near our house but outside of it, full of loving caregivers and community.…
But after more than three decades of existence, the day program closed last December. If someone without the ability to pay walked into its doors, the program had taken care of them and then filed for reimbursement through Medi-Cal. The state gave the organization $76.27 a day for care that costs $250 to provide — a reimbursement rate that hasn’t changed since 2009.
My dad’s health took a nose-dive when the program closed, as did my mom’s. We tried to work with an in-home health aide, a fantastic woman who loved bringing my dad fried chicken and spaghetti for lunch and laughing at his antics, but ultimately she couldn’t handle his wandering and increased agitation.
And we were not unique. When I asked the other families in the program how they had been doing since the closure, they replied with words like “devastating” and “desperate.” One daughter shared: “I fear that my career is stalled due to my need to be available to manage my dad’s financial affairs including reimbursements, caregiving on weekends, and managing two kids who have dyslexia. My husband’s career is stalled, too.”
If Gene Hackman had been attending a day program like the one my dad briefly thrived at, he and his wife might still be alive. These day programs make caregivers’ lives and careers possible, enrich the lives of our elders at the most vulnerable moment and literally save lives. And day programs for our elders with dementia and Alzheimer’s are not only the moral and psychologically sound solution, but the fiscally responsible one. The average day program costs $2,167 a month, in contrast to an in-home healthcare aide, who costs an average of $6,483 a month, or a private room in a memory care facility, which costs an average of $10,646.
Mealtrains are so nourishing. The grace of understanding neighbors is such a blessing. But what family caretakers in this country need, more than anything else, are reliable, accessible and enlivening day programs.
And we’re not likely to get them unless Americans make clear that they won’t tolerate otherwise. If the Republicans’ much-discussed cuts to Medicaid and Medicare go through, states will be even less likely to raise reimbursement rates for these kinds of programs, and providers will be under even more pressure to raise already exorbitant fees to make up for federal shortages. That means the inadequate number of day programs we already have will shut down, and new ones won’t open, right when America is entering a historic surge of people turning 65. People will suffer and people will die. It’s that simple.
Novelist Pearl Buck once wrote, “Our society must make it right and possible for old people not to fear the young or be deserted by them, for the test of a civilization is the way that it cares for its helpless members.”
We are already failing, and will only fail more lethally if we cut Medicare and leave aging Americans and their caregivers stranded.
Courtney E. Martin is the author of many books and the Substack newsletter Examined Family. She is also the storyteller-in-residence at the Holding Co., a lab to redesign care.
The post Contributor: Families caring for elders need more than compassion. They need day programs to ensure support appeared first on Los Angeles Times.
