I will be glad when my mom dies "Fearing that you will regret being estranged if someone suddenly dies is the bogeyman of going no contact. I’m not afraid of this. My mother has effectively been dead to me for two decades. I grieved her a long time ago and have made peace with the fact that I will likely never be in the same room with her again while she is alive.

I will be glad when my mom dies

"Fearing that you will regret being estranged if someone suddenly dies is the bogeyman of going no contact. I’m not afraid of this. My mother has effectively been dead to me for two decades. I grieved her a long time ago and have made peace with the fact that I will…

I’m Stuck Caring for a Husband I No Longer Love "I’ve been married to my husband for 35 years. He is 88 and I’m 79." "He apparently believed that once the courtship and honeymoon were over, he could start behaving like an entitled jerk (my words, not his). I’ve made attempts to leave, none of which panned out. During my third attempt, about 10 years ago, it became clear to me that my husband was in cognitive decline.

I’m Stuck Caring for a Husband I No Longer Love

"I’ve been married to my husband for 35 years. He is 88 and I’m 79." "He apparently believed that once the courtship and honeymoon were over, he could start behaving like an entitled jerk (my words, not his). I’ve made attempts to leave, none of…

Depression 101, for Newcomers What if saving your child’s life was up to you? Or, perhaps it's your niece or nephew, or your neighbor.  In our patchwork mental health system, it might be. As school starts again, someone near you will start living a bare bones version of life (my daughter’s way of putting it.)  As school, band, sports and social activities pick up, so does the pressure. 

Depression 101, for Newcomers

What if saving your child’s life was up to you? Or, perhaps it's your niece or nephew, or your neighbor.  In our patchwork mental health system, it might be. As school starts again, someone near you will start living a bare bones version of life (my daughter’s way of…

Who’s going to be there for me when I’m old? "We hear a lot about the ‘Sandwich Generation’, those women (it’s always bloody women!) who are juggling caring for aging parents alongside their teenage children and work commitments. What we hear very little about though, is what Kirsty Woodard, the original founder of AWOC, named the tightrope generation: those one in five people without children, many of whom find themselves caring for aging or vulnerable family members or friends without anyone who might do the same for them in the future—especially as it’s more often those without children who seem to be 

Who’s going to be there for me when I’m old?

"We hear a lot about the ‘Sandwich Generation’, those women (it’s always bloody women!) who are juggling caring for aging parents alongside their teenage children and work commitments. What we hear very little about though, is what Kirsty Woodard, the…

‘There are times I feel I hate them’: how siblings can clash over end-of-life care for elderly parents "She’d been worried about them – her mum had been diagnosed with Alzheimer’s disease and her dad had been having frequent falls. For years she’d been trying to get them to talk about whether they needed to move to aged care, to assess their financial situation and face what was coming next, but they’d dismissed her, saying they were fine.

‘There are times I feel I hate them’: how siblings can clash over end-of-life care for elderly parents

"She’d been worried about them – her mum had been diagnosed with Alzheimer’s disease and her dad had been having frequent falls. For years she’d been trying to get them to talk about whether they…

How to Pay for Long-Term Care "Like child care, long-term care is expensive. Like child care, people who work in long-term care are underpaid. Unlike child care, most of the cost is covered by government subsidies in the form of Medicaid. The catch is that to qualify for Medicaid, you have to have spend down almost all of your assets. Essentially, you have to go from middle class to poor.

How to Pay for Long-Term Care

"Like child care, long-term care is expensive. Like child care, people who work in long-term care are underpaid. Unlike child care, most of the cost is covered by government subsidies in the form of Medicaid. The catch is that to qualify for Medicaid, you have to have…

‘You are living with a difficult person who is waiting to die’: my harrowing time as Patricia Highsmith’s assistant "I first read Patricia Highsmith’s novels in the autumn of 1994. I was 20 and living in a room in her house in Tegna, Switzerland, that was plastered with bookshelves full of her first editions, organised in chronological order. Pat was 73 and knew she was about to die; she had been, it was rumoured, diagnosed with cancer or some other terminal disease.

‘You are living with a difficult person who is waiting to die’: my harrowing time as Patricia Highsmith’s assistant

"I first read Patricia Highsmith’s novels in the autumn of 1994. I was 20 and living in a room in her house in Tegna, Switzerland, that was plastered with bookshelves full of her…

Caring Across Distance—One Call at a Time "Sitting in the living room of her renovated and neatly arranged two-story house, I asked Alice how she felt about her children living abroad. She responded matter-of-factly: “Because my children are abroad, I am living happily here. If they lived here and had no jobs, or earned a very poor salary, would we all be happy? No!” Her eyes filled with tears only when she spoke of her late husband.

Caring Across Distance—One Call at a Time

"Sitting in the living room of her renovated and neatly arranged two-story house, I asked Alice how she felt about her children living abroad. She responded matter-of-factly: “Because my children are abroad, I am living happily here. If they lived here and…

My husband and son suffered strokes, 30 years apart. Shockingly little had changed "The ambulance took us to the local hospital where they said that my husband had had cerebral accident – a stroke. The cause was probably years of uncontrolled high blood pressure, about which no doctor had warned him. They said he needed rest and reassurance. Unfortunately, because of the so-called efficiency savings introduced by John Major’s government, there was a shortage of beds and of nurses in all London hospitals.

My husband and son suffered strokes, 30 years apart. Shockingly little had changed

"The ambulance took us to the local hospital where they said that my husband had had cerebral accident – a stroke. The cause was probably years of uncontrolled high blood pressure, about which no doctor had warned…

My holy fool "From the ages of sixteen to twenty-six I lived through something sacred: my father’s last years, the illness years. I understand why many remember him in his prime, public form—a quirky philosopher and beloved professor in Barcelona—but what happened behind closed doors was more complicated and beautiful, and we experienced it in solitude, not in society." "I don’t remember a more difficult time with my father than the illness years, but also none more true, revealing, and free."

My holy fool

"From the ages of sixteen to twenty-six I lived through something sacred: my father’s last years, the illness years. I understand why many remember him in his prime, public form—a quirky philosopher and beloved professor in Barcelona—but what happened behind closed doors was more…

Autism or Encephalitis? My Son’s Misdiagnosis and Our Family’s Season in Hell "One night in August 2021, at around 2am, my husband and I were awakened by the sound of laughter coming from our son’s bedroom down the hall. I went in to check on him. Our five-year-old, “Leo,” was awake and running around the room in circles, plowing into toys and furniture in the dark. The expression on his face shocked me.

Autism or Encephalitis? My Son’s Misdiagnosis and Our Family’s Season in Hell

"One night in August 2021, at around 2am, my husband and I were awakened by the sound of laughter coming from our son’s bedroom down the hall. I went in to check on him. Our five-year-old, “Leo,” was awake and running…

My Friends Have So Many Issues "Meg and I have an incredible local community. Fiercely loving people who have supported us through our biggest trials. For several years, that support came from a distance: researching medications, hunting down clinical trials, spending whole hours on the phone arguing with my insurance company. The day-to-day realities of illness, though, were something Meg and I largely handled alone. But when my symptoms started to worsen, we realized we needed more hands on deck.

My Friends Have So Many Issues

"Meg and I have an incredible local community. Fiercely loving people who have supported us through our biggest trials. For several years, that support came from a distance: researching medications, hunting down clinical trials, spending whole hours on the phone…

When Did You Die? "If you die on December 31st, 20XX at 11:59 PM, it is vastly different from dying on January 1st, 20XX+1 at 12:01 AM. In the first Scenario your estate can be wrangled, wrestled and closed (most likely) on Tax Year 20XX, which usually means year 20XX+1. If you choose to leave this mortal coil in the second scenario, your estate’s works with the CRA will not close until year 20XX+2!

When Did You Die?

"If you die on December 31st, 20XX at 11:59 PM, it is vastly different from dying on January 1st, 20XX+1 at 12:01 AM. In the first Scenario your estate can be wrangled, wrestled and closed (most likely) on Tax Year 20XX, which usually means year 20XX+1. If you choose to leave…

ADHD stole my son. Meds gave him back. "Probably March of 1999, I received a letter from Great Ormond Street hospital, a copy of the letter sent to our GP, updating them on his first surgery and the plan for going forward. One line jumped out: “K— is a very happy baby, a credit only to his mother.” Of all the thousands of reports and letters I have received about my son’s medical care, that is the only one I can remember the exact words from.

ADHD stole my son. Meds gave him back.

"Probably March of 1999, I received a letter from Great Ormond Street hospital, a copy of the letter sent to our GP, updating them on his first surgery and the plan for going forward. One line jumped out: “K— is a very happy baby, a credit only to his…

The Joy and Toll of Caring for a Family Member With an Intellectual or Developmental Disability "It was the third time in 12 months that Darlene had tried to secure a developmental disabilities (DD) waiver for Alan. In its most basic form, a DD waiver is the most comprehensive assistance the state of Colorado offers people like her son. Within the IDD community, the DD waiver is the proverbial golden ticket that not only opens up a host of services but also unlocks a lifetime of security, namely home-based care that can provide parents the certainty that their child will be supported indefinitely.

The Joy and Toll of Caring for a Family Member With an Intellectual or Developmental Disability

"It was the third time in 12 months that Darlene had tried to secure a developmental disabilities (DD) waiver for Alan. In its most basic form, a DD waiver is the most comprehensive assistance the state…

Inside Colorado’s Battle Against Rare Diseases "Historically, when patients first start experiencing unexplained symptoms, they visit primary care providers—and that’s where a seemingly endless cycle of doctor referrals begins. Depending on the rare disease that’s involved, getting a diagnosis takes an average of eight years. “These patients often find themselves visiting their usual doctor’s office or an emergency room, and that’s not necessarily where rare disease experts usually hang out,” Taylor says.

Inside Colorado’s Battle Against Rare Diseases

"Historically, when patients first start experiencing unexplained symptoms, they visit primary care providers—and that’s where a seemingly endless cycle of doctor referrals begins. Depending on the rare disease that’s involved, getting a diagnosis…

God doesn’t need another angel: "As a hospital chaplain, I have some wishes for the betterment of humanity. I want everyone to recognize loss, name their emotions and talk about advance care planning. But at the top of my list is stopping the use of “Religious Platitudes.” I am referring to the vaguely religious sounding phrases that well-meaning people offer to someone in pain. Here is a list of the comments that get under my skin:

God doesn’t need another angel:

"As a hospital chaplain, I have some wishes for the betterment of humanity. I want everyone to recognize loss, name their emotions and talk about advance care planning. But at the top of my list is stopping the use of “Religious Platitudes.” I am referring to the…

Rita Hayworth’s final years "Hayworth's daughter, then only 18 and a freshman in college, had become fully troubled by her mother’s strange behavior. “When I was at Bennington in Vermont, she would call me and she would just repeat the same question, and I was very concerned,” Khan says. “And thank goodness there were people who cared about her in Beverly Hills—her lawyer, for one.

Rita Hayworth’s final years

"Hayworth's daughter, then only 18 and a freshman in college, had become fully troubled by her mother’s strange behavior. “When I was at Bennington in Vermont, she would call me and she would just repeat the same question, and I was very concerned,” Khan says. “And…

How to Be a Caregiver to Aging, Difficult Parents "During the summers my mother would take long trips, which seemed to become even longer as I got older, to visit my grandparents in Connecticut. They were very sick and getting sicker. She would take me up there with her, to their big grey and white Victorian house with this massive screened-in porch, and I would spend the summers becoming increasingly bored out of my mind.

How to Be a Caregiver to Aging, Difficult Parents

"During the summers my mother would take long trips, which seemed to become even longer as I got older, to visit my grandparents in Connecticut. They were very sick and getting sicker. She would take me up there with her, to their big grey and…

Why My Father Called Me Son, Daughter, He, She and It "My father and I were in Starbucks about a year after he learned he had Alzheimer’s when he looked me up and down with his judge’s eye and said to the barista, “This young — ahem — man will have a latte.” I laughed, not sure if he was joking. Until that moment, I had always been his daughter." "Although he was technically forgetting who I am, there’s also something affirming about his honest assessment of my gender.

Why My Father Called Me Son, Daughter, He, She and It

"My father and I were in Starbucks about a year after he learned he had Alzheimer’s when he looked me up and down with his judge’s eye and said to the barista, “This young — ahem — man will have a latte.” I laughed, not sure if he was joking.…

The Big Secret About Medicaid: It’s a Middle-Class Benefit "Yes, Medicaid primarily serves Americans with the lowest incomes, and you may not count yourself among them... it’s a good time to consider others who qualify. It could be an aging parent who needs nursing home care, whose significant nest egg has been drained after 20 years of retirement. Or it could be a 26-year-old adult child who can’t be covered on your health insurance anymore but is not yet making much money.

The Big Secret About Medicaid: It’s a Middle-Class Benefit

"Yes, Medicaid primarily serves Americans with the lowest incomes, and you may not count yourself among them... it’s a good time to consider others who qualify. It could be an aging parent who needs nursing home care, whose significant…

Our suddenly empty nest

"Our son, Max, moved out. It all came up suddenly, a few years earlier than we expected and, as it happens, the invitation came exactly sixteen years after we arrived home with Max from India." "You might expect me to get sentimental here and ask, Where did the years go?…

Forgetting and becoming My dad smiled and said, “Look at that. He’s gotten so big. I just can’t believe it.” “Do you remember what he was like as a little boy?” I asked my dad. I try not to “test” him these days. To be clear, this wasn’t that. I did “test” him more often in the early years of his dementia diagnosis when I was learning whole new schemas for who he was and what he was capable of.

Forgetting and becoming

My dad smiled and said, “Look at that. He’s gotten so big. I just can’t believe it.” “Do you remember what he was like as a little boy?” I asked my dad. I try not to “test” him these days. To be clear, this wasn’t that. I did “test” him more often in the early years of his…

How having lived abroad protects you from caregiver burnout Life is full of transferrable skills. There are certain things you're forced to learn as a traveler or an immigrant that are essential to taking on the role of caregiver without being totally overwhelmed by stress. Those who have had few experiences with travel imagine it to be glamorous and fun. There are a million wanna be influencers perpetuating this myth.

How having lived abroad protects you from caregiver burnout

Life is full of transferrable skills. There are certain things you're forced to learn as a traveler or an immigrant that are essential to taking on the role of caregiver without being totally overwhelmed by stress. Those who have had few…

Thou Shalt Not Fix "It is such a natural inclination for chaplaincy students (and all of us well-meaning individuals) to try to fix a situation when we are faced with someone’s pain. We might be quite skilled at hearing about a person’s problem and intuiting a solution. There are times where fixing is the intervention needed in professional caregiving. It is a valuable tool to have in the helping toolbox.

Thou Shalt Not Fix

"It is such a natural inclination for chaplaincy students (and all of us well-meaning individuals) to try to fix a situation when we are faced with someone’s pain. We might be quite skilled at hearing about a person’s problem and intuiting a solution. There are times where…

A quiet day Picture this. A "quiet" day with my husband. Quiet in caregiver world usually means something's brewing, and sure enough, it did. He slept most of the day, which sounds great, but it just shifts the kind of care you're giving. Less running around, more… well, more of other stuff. When he was awake, he kept seeing people who weren't there, sitting in the family room, having full-blown conversations with them.

A quiet day

Picture this. A "quiet" day with my husband. Quiet in caregiver world usually means something's brewing, and sure enough, it did. He slept most of the day, which sounds great, but it just shifts the kind of care you're giving. Less running around, more… well, more of other stuff. When…

Our “awkward, brave & kind” email and the response we received "the nurses and other staff had started taking me aside. “Your dad looks exhausted.” “Your dad needs more help.” “I’m worried about your dad.” When I asked him how he was doing, he kept saying he was OK and that he would let me know if caring for Mom was getting to be too much. He assured me that it was an honor to care for her.

Our “awkward, brave & kind” email and the response we received

"the nurses and other staff had started taking me aside. “Your dad looks exhausted.” “Your dad needs more help.” “I’m worried about your dad.” When I asked him how he was doing, he kept saying he was OK and that he would let me know if…

I don’t need to be happy This is not some clever trick: let go of trying to be happy and you'll become super happy! No, this is the realization that I don't need to be happy. It's not a requirement for a good life or a meaningful life. Really, it's not required at all. The quest for happiness doesn't work. The more we try to be happy, the more we want to be happy, the harder it is to feel happy.

I don’t need to be happy

This is not some clever trick: let go of trying to be happy and you'll become super happy! No, this is the realization that I don't need to be happy. It's not a requirement for a good life or a meaningful life. Really, it's not required at all. The quest for happiness…

Ten Top Moments of Care on TV in 2024 "Even though more than 40 percent of adults in the U.S. are providing unpaid care for someone in their life, TV shows that feature care as a central or even ancillary aspect of characters’ lives and the plots are rare — as of 2021, just 10 percent of shows depicted some aspect of caregiving. Only a small fraction of those acknowledged the very real financial tolls, workplace consequences, and social isolation that often accompany caring for children, older loved ones, or disabled family members."

Ten Top Moments of Care on TV in 2024

"Even though more than 40 percent of adults in the U.S. are providing unpaid care for someone in their life, TV shows that feature care as a central or even ancillary aspect of characters’ lives and the plots are rare — as of 2021, just 10 percent of shows…

A Grief Observed: My grandfather, our grief, and me As a child, one of my recurrent prayers was to ask God for long life and prosperity. But something my 5-year-old self failed to consider is that a long life comes with a bootload of grief. If you’re “lucky,” your disasters are paced, and you get a blindsiding event once every three or more years. However, if you’re like my grandfather, you have periods of quietness and boom!

A Grief Observed: My grandfather, our grief, and me

As a child, one of my recurrent prayers was to ask God for long life and prosperity. But something my 5-year-old self failed to consider is that a long life comes with a bootload of grief. If you’re “lucky,” your disasters are paced, and you get…