Alzheimer’s is on the rise across all Americans over 65, with one in nine people in that age cohort now living with the disease, a total of over six million people. But for American Indian and Alaska Native populations—who are more predisposed to Alzheimer’s and...

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It’s time to embrace community care & let go of individualistic self-care
Everyone loves self-care these days… including billionaires, wealthy celebrities, corporations, your workplace or academic institutions, pop culture, and every social media influencer & wellness “guru”. The flourishing multi-billion dollar wellness, self-help...
Dinner with Proust: how Alzheimer’s caregivers are pulled into their patients’ worlds
In her mid-70s, Ida began showing signs of Alzheimer’s. Her decline was gradual. She experienced the usual memory loss and attendant confusion, but life went on pretty much as before. Then one day, Henry came home to find Ida speaking to a framed photograph on the...
Disability needs a new story
Disability typically is understood as the problem of a selected group of individuals who meet a defined set of conditions. This primary focus on the “people with the problem” has resulted in a narrow framework for understanding disability and for developing...
What I’ve learned being reliant on a caregiver
My family and I worked hard to find a set of four private pay caregivers to supplement the care they already provide for me. But with any employer-employee situation, things can happen accidentally or at the last minute that throw a wrench in an employee's work day....
The Ultimate Guide to Purée
We ate a mostly pureed diet for almost two years. Yes, I said we, because I ate what Grandma ate. I never wanted her to feel different. Also, it was easier. Pureeing it all saves time. Otherwise, I had an added task of separating my meal from hers… and if there were...
How to Get Nurses Back in Homes Supporting Disabled Children
Finding nurses to care for medically fragile children at home has historically been difficult. But since the start of the COVID-19 pandemic, the problem has worsened dramatically, according to parents of children with disabilities and home health agencies. The...
How to Set Boundaries with a Narcissistic Parent
Adult children of narcissists often find independence by separating out and spending limited time with their parents. But, as parents start to age and need support, the equation changes. Suddenly you may be expected to support them and may find yourself in the midst...
My Child Is in an Impossible Place, and I Am There With Her
In my family, we talk about hard things. That’s not to say we are morose. We are not. Nor are we particularly profound. If anything, we lean into the ridiculous, and the silly, whenever possible. At the same time, in over three years of managing our daughter Orli’s...
My grandmother died at home, just as she wanted. It cost $145,000
My grandmother died at home recently, surrounded by her family and loving caregivers with the support of a hospice team. It was exactly how she pictured the end of her life, and it cost our family $145,613.79. Many people envision their final days like my grandmother...
Family caregivers of people with long COVID bear an extra burden
For Louise Salant, long COVID has meant new stress, new responsibilities, and multiple medical crises to manage. It's transformed her life. But there's a twist. She's had to deal with this condition not just as a patient but also as a caregiver for her 86-year-old...
How Do You Deal With a Narcissistic Aging Parent?
Caring for a loving and grateful aging parent can be overwhelming at times. So, imagine what it’s like caring for someone who isn’t just struggling physically, but is also mean, manipulative, and highly self-involved. Unfortunately, some people don’t need to imagine,...
“Watching My Beloved Hurt Is Hard”
People are often curious about how Lene and I ended up together. This is doubly true when I tell them that Lene was disabled long before I met her. They can imagine themselves in a relationship where their partner could end up with a chronic illness or...
On hope
I knew what was going on the moment I rushed up two flights of stairs and found him. The kind of stroke my husband Roland had that morning, basilar artery ischemic, is not the sort of thing you want to be googling. It has a high mortality rate in cases where the...
The Brief, Wondrous Life of Little Leo
When Leo Babler was born with a rare and deadly genetic disorder, his parents reshaped their lives, moving to the mountains, building out an adventure van, and making sure their son experienced the most beautiful wild places in the country during the time they had ......
I wrote about high-priced drugs for years. Then my toddler needed one.
Anakinra is expensive — on average, private health plans pay about $4,000 a month for it — so we needed to get approval before it would be covered. In early September, Aetna denied the request, requiring an additional test. Our doctors ordered the test and appealed....
For Workers, Hospitals Have Become the New Steel Mills — Minus the Strong Unions
How did it come to be that health care is the largest sector of employment in the United States? And why is health care work so much more precarious and less heavily unionized than the dominant industries of eras past? Health care workplaces have replaced steel mills...
What is compassion fatigue? Caregivers explain.
"Suffering from compassion fatigue does not mean you’re bad at helping or caring, it only means the scale between caring for others and caring for yourself is no longer balanced," [Lynne Hughes] says. "When you're in a role where you're nurturing and caring for others...
Can I Refuse to Care for an Elderly Parent?
Caring for our parents as they age seems like the obvious way to repay them. Yet, some people ask: Can I refuse to care for an elderly parent? The question isn’t as surprising as it might seem. After all, providing care is no small task. It can be draining both...
The Dangers of Caregiver Martyr Syndrome
Do people act as if you're choosing to do all that you do? And choosing to have no time for yourself? This article by Cassie Green on Kapok explains the relationship and cultural dynamics that push people into providing for others, even at great cost to themselves and...
The Silent Epidemic Affecting Generation Z
as of 2020, more than one in six Americans was actively responsible for the daily needs and well-being of a loved one. That number only increased during the Covid-19 pandemic, as families took loved ones out of long-term care, adult day centers closed, and the paid...
The Silent Epidemic Affecting Generation Z
There are at least three million caregivers under age twenty-five in America. The burdens they face are unprecedented. Their resolve is our only hope. ... Of those family caregivers, more than three million are members of Gen Z: young people born between 1997 and...
For family caregivers, cost of unpaid care work is both personal and professional
Helen Ries was in her forties when her father died in 2011, and then her mother in 2014, a turn of events that left her as the main caregiver for her brother Paul Knoll, who has Down syndrome. Ms. Ries moved her brother, who is now 50, into the Ottawa home she shares...
The Switzerland schedule
“Your mother,” he told us, “has multiple sclerosis.” Whatever that was. I carried on with my day like any other on that trip, going swimming, having some beers by the beach. No discernible changes darkened my mood. Looking back, I ask: Had he failed to explain the...