July 7, 2025 • 10 mins
On this episode of Our American Stories, caregiving for a loved one with Alzheimer's is often invisible work, but not in this powerful account from Meryl Comer. The Emmy-winning journalist opens up about her husband's early-onset Alzheimer's and the emotional journey of becoming his full-time caregiver. Drawing from her memoir Slow Dancing with a Stranger, she offers deeply personal insight into the daily realities of Alzheimer's care, from the first signs of cognitive decline to the long road of loss, resilience, and unconditional love.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:10):
And we continue here with our American stories, and this
next one is about a really serious subject and one
that affects so many millions of American families. And we're
talking about Alzheimer's disease. And my friend Chuck Stetson and
the Stetson Family Office does such terrific work in this area,
and we're doing so many really strong health stories in
(00:32):
partnership with the Stetson Family Office. And this is what
he just kept coming at us with and just said,
you got to tell this story. You've got to call
this lady. And so today we bring you the story
of Meryl Comer. She is an Emmy Award winning reporter.
She was one of the first women in the early
eighties to host a nationally syndicated debates show. But about
(00:52):
twenty years ago, Merrill's husband was diagnosed with Alzheimer's. Here
is her story.
Speaker 2 (01:00):
The man I live with is not the man I
fell in love with and married. He has slowly been
robbed of something we all take for granted, the ability
to navigate the mundane activities of daily living, bathing, shaving, dressing,
and using the bathroom. His inner clock is confused and
(01:22):
can't be reset. His eyes are vacant and unaware, as
if an internal window shade veils our excess before I
grasp what was happening. I was hurt and annoyed by
my husband's behavior. Those feelings dissolved into unconditional empathy once
I understood the cruelty of his diagnosis early onset Alzheimer's disease.
(01:49):
He was fifty eight. At first, I ran interference and
fought for him because it was the right thing to do.
He was slipping out of controls, used childlike and helpless,
his social filter stripped away. He shadowed me because I
was familiar and safe, even when he could no longer
(02:11):
remember my name. I always loved him, but during our
marriage he was often aloof and unreachable. In illness, unlike
in health, he made me feel needed and important to him.
Neither a scientist nor a neurologist. I have spent close
to two decades trying to decipher what's going on in
(02:34):
my husband's head. How hard and unfair it is for
such a smart man to lose pieces of his intellect
and independence. His disease is my crossword puzzle. Harvey has
long forgotten me, but I am constant as his co
pilot and guardian. I bear the burden of all decisions
for us. Both the demons and terror of his world
(02:56):
define mine. I play into his reality and pretend that
his fate and our life together are not doomed. Unfortunately,
I know better Alzheimer's distorts and destroys shared memories that
bind family ties. Caregivers are not unlike victims who survive
a hurricane and find ourselves sifting through the rubble to
(03:19):
rescue faded, storm drenched photos or sentimental objects. We piece
together what's left of our past and struggle to put
down building blocks for the future. I need to make
some sense of my journey through this storm. My bookshelf
is lined with tomes on dementia care, yet the page
I need always seems to be missing. Each brain unravels
(03:42):
in its own quirky and idiosyncratic way. I have learned
firsthand that there is no single solution to taking care
of someone with dementia. Many times, personal stories involving Alzheimer's
gloss over the unseemly details of care. They're written as
love stories of unquestioned devotion, or living memorials to honor
(04:06):
someone during better times. Why not as spouses and caregivers,
we deserve to do whatever works for us. It's our
version of pain management. But I never wanted to embellish
or soften the edges around the truth. It does not
do justice to the cruelty of the disease. I offer
(04:28):
you my own experiences from a position of hard won humility.
I hope you will thread them with your own. When
I say I have cared full time for Harvey and
her home all these years, many ask me why. Even now,
there is always an initial reflex that makes me want
to say, do I really need to explain myself? After
(04:50):
all I've been through? I realize that the question is
a natural one, a human one, a social one. The
interlocutors are not judging me, but rather vicariously checking themselves.
In questioning me, they're testing their own capacity to deal
with the diagnosis of Alzheimer's disease and the potential impact
(05:11):
it might have on their relationship with a partner or parent.
When people hear my story, they sometimes tell me they
wouldn't make the same choices. I do not hold myself
up as an example to follow. No one who has
ever been on the front lines of care ever questions
when someone says, I can't do this any more, but
(05:34):
I do want to be part of the last generation
of caregivers trapped by a loved one's diagnosis, an absence
of disease modifying therapies, and a troublesome lack of quality
care options. When it comes to Alzheimer's, caregivers are frequently
too worn out or isolated to protest. Perhaps this is
(05:56):
why advocacy around the disease has often lacked the passion
an energy that characterized the cancer in HIV AIDS communities.
But how will people understand if we don't tell our
stories without apology? Alzheimer's disease today affects a reported five
point four million people in the United States and forty
(06:17):
four million worldwide. Like a stealth invader, it is quietly
demiting aging populations globally while pushing past cancer and HIV
AIDS as the most critical public health problem of our time.
Every sixty eight seconds, another of us falls victim. Yet
fifty percent of those with dementia never get diagnosed. There
(06:42):
is not a single FDA approved drug that actually slows
the progression of Alzheimer's disease. There have been too many
failed late stage clinical trials with promising drugs that seemed
to work until it became clear they did not. Sometimes
I think we'd be better off if Allzheimer's disease was
a brand new emergency instead of a century old threat
(07:04):
to which we had somehow become inored. Perhaps people would
understand that when it comes to this disease, everyone is
a stakeholder, because everyone is at risk. There are also
fifteen million caregivers just like me, unintended victims and not
among the official count. Add to our legions, those caring
(07:26):
for loved ones young and old with the diseases of
the brain, traumatic brain injuries, and other chronic diseases complicated
by a memory disorder. We speak the same language. Our
numbers amplify the collective pain that makes it impossible for
me to rest. The only way to minimize the effect
(07:46):
of Alzheimer's disease is to get out in front of it,
delay its onset, or even reverse its devastation of the mind.
We need to move toward early diagnosis and study adults
who do not yet show symptoms, people like you and me.
Such a decision entails hard personal choices, risks, and emotional discomfort.
(08:12):
It means demanding safe and clinically valid genetic tests that
let us learn if we are at a higher risk
forgetting Alzheimer's disease. It requires managing our lives and choices
under the shadow of the possibility of disease. Those of
us who are fifty years or older must stop viewing
(08:33):
ourselves as ageless. All of us should track our cognitive
health just as we do cholesterol levels or blood pressure.
I write for all of us who are still well
but have seen the devastation of Alzheimer's disease firsthand. The
emergency is with us and in us. I write to
(08:54):
clinicians reluctant to diagnose because they can't effectively treat. Please
know the inadvertent trauma you inflict on families left confused, hurt,
and helpless. Then time runs out on the ultimate conversation
with our loved ones about end of life wishes, their
(09:15):
minds are erased. It's simply too late. I write to
reach the generation of our adult sons and daughters who
struggle to understand our lives as we care for a
loved one with Alzheimer's. They stand on the precipice and
wrestle with issues and decisions similar to the ones we faced.
(09:37):
They deserve better options and not the bankrupting burden of
our care. This is not the legacy we want for
our children, with the way any of us wish to
be remembered. I write for my grandchildren because, no matter
how hard I tried, Alzheimer's blanketed my home with sadness.
(09:59):
I know that each of them, unconditionally has been my salvation.
One day, I hope they'll read these words and appreciate
my choices. As I write these words, a faint glow
fills the room I share with Harvey. He's always present,
even though he is absent. There is an intimacy in
(10:22):
our isolation. Nonetheless, I am willing to open the door
to our room in the hope that you will find
a way inside. Only then will my story be worth
the pain of it's telling.
Speaker 1 (10:39):
Harvey's story and his bride's Meryl comer here on our
American stories.
And we continue here with our American stories, and this
next one is about a really serious subject and one
that affects so many millions of American families. And we're
talking about Alzheimer's disease. And my friend Chuck Stetson and
the Stetson Family Office does such terrific work in this area,
and we're doing so many really strong health stories in
(00:32):
partnership with the Stetson Family Office. And this is what
he just kept coming at us with and just said,
you got to tell this story. You've got to call
this lady. And so today we bring you the story
of Meryl Comer. She is an Emmy Award winning reporter.
She was one of the first women in the early
eighties to host a nationally syndicated debates show. But about
(00:52):
twenty years ago, Merrill's husband was diagnosed with Alzheimer's. Here
is her story.
Speaker 2 (01:00):
The man I live with is not the man I
fell in love with and married. He has slowly been
robbed of something we all take for granted, the ability
to navigate the mundane activities of daily living, bathing, shaving, dressing,
and using the bathroom. His inner clock is confused and
(01:22):
can't be reset. His eyes are vacant and unaware, as
if an internal window shade veils our excess before I
grasp what was happening. I was hurt and annoyed by
my husband's behavior. Those feelings dissolved into unconditional empathy once
I understood the cruelty of his diagnosis early onset Alzheimer's disease.
(01:49):
He was fifty eight. At first, I ran interference and
fought for him because it was the right thing to do.
He was slipping out of controls, used childlike and helpless,
his social filter stripped away. He shadowed me because I
was familiar and safe, even when he could no longer
(02:11):
remember my name. I always loved him, but during our
marriage he was often aloof and unreachable. In illness, unlike
in health, he made me feel needed and important to him.
Neither a scientist nor a neurologist. I have spent close
to two decades trying to decipher what's going on in
(02:34):
my husband's head. How hard and unfair it is for
such a smart man to lose pieces of his intellect
and independence. His disease is my crossword puzzle. Harvey has
long forgotten me, but I am constant as his co
pilot and guardian. I bear the burden of all decisions
for us. Both the demons and terror of his world
(02:56):
define mine. I play into his reality and pretend that
his fate and our life together are not doomed. Unfortunately,
I know better Alzheimer's distorts and destroys shared memories that
bind family ties. Caregivers are not unlike victims who survive
a hurricane and find ourselves sifting through the rubble to
(03:19):
rescue faded, storm drenched photos or sentimental objects. We piece
together what's left of our past and struggle to put
down building blocks for the future. I need to make
some sense of my journey through this storm. My bookshelf
is lined with tomes on dementia care, yet the page
I need always seems to be missing. Each brain unravels
(03:42):
in its own quirky and idiosyncratic way. I have learned
firsthand that there is no single solution to taking care
of someone with dementia. Many times, personal stories involving Alzheimer's
gloss over the unseemly details of care. They're written as
love stories of unquestioned devotion, or living memorials to honor
(04:06):
someone during better times. Why not as spouses and caregivers,
we deserve to do whatever works for us. It's our
version of pain management. But I never wanted to embellish
or soften the edges around the truth. It does not
do justice to the cruelty of the disease. I offer
(04:28):
you my own experiences from a position of hard won humility.
I hope you will thread them with your own. When
I say I have cared full time for Harvey and
her home all these years, many ask me why. Even now,
there is always an initial reflex that makes me want
to say, do I really need to explain myself? After
(04:50):
all I've been through? I realize that the question is
a natural one, a human one, a social one. The
interlocutors are not judging me, but rather vicariously checking themselves.
In questioning me, they're testing their own capacity to deal
with the diagnosis of Alzheimer's disease and the potential impact
(05:11):
it might have on their relationship with a partner or parent.
When people hear my story, they sometimes tell me they
wouldn't make the same choices. I do not hold myself
up as an example to follow. No one who has
ever been on the front lines of care ever questions
when someone says, I can't do this any more, but
(05:34):
I do want to be part of the last generation
of caregivers trapped by a loved one's diagnosis, an absence
of disease modifying therapies, and a troublesome lack of quality
care options. When it comes to Alzheimer's, caregivers are frequently
too worn out or isolated to protest. Perhaps this is
(05:56):
why advocacy around the disease has often lacked the passion
an energy that characterized the cancer in HIV AIDS communities.
But how will people understand if we don't tell our
stories without apology? Alzheimer's disease today affects a reported five
point four million people in the United States and forty
(06:17):
four million worldwide. Like a stealth invader, it is quietly
demiting aging populations globally while pushing past cancer and HIV
AIDS as the most critical public health problem of our time.
Every sixty eight seconds, another of us falls victim. Yet
fifty percent of those with dementia never get diagnosed. There
(06:42):
is not a single FDA approved drug that actually slows
the progression of Alzheimer's disease. There have been too many
failed late stage clinical trials with promising drugs that seemed
to work until it became clear they did not. Sometimes
I think we'd be better off if Allzheimer's disease was
a brand new emergency instead of a century old threat
(07:04):
to which we had somehow become inored. Perhaps people would
understand that when it comes to this disease, everyone is
a stakeholder, because everyone is at risk. There are also
fifteen million caregivers just like me, unintended victims and not
among the official count. Add to our legions, those caring
(07:26):
for loved ones young and old with the diseases of
the brain, traumatic brain injuries, and other chronic diseases complicated
by a memory disorder. We speak the same language. Our
numbers amplify the collective pain that makes it impossible for
me to rest. The only way to minimize the effect
(07:46):
of Alzheimer's disease is to get out in front of it,
delay its onset, or even reverse its devastation of the mind.
We need to move toward early diagnosis and study adults
who do not yet show symptoms, people like you and me.
Such a decision entails hard personal choices, risks, and emotional discomfort.
(08:12):
It means demanding safe and clinically valid genetic tests that
let us learn if we are at a higher risk
forgetting Alzheimer's disease. It requires managing our lives and choices
under the shadow of the possibility of disease. Those of
us who are fifty years or older must stop viewing
(08:33):
ourselves as ageless. All of us should track our cognitive
health just as we do cholesterol levels or blood pressure.
I write for all of us who are still well
but have seen the devastation of Alzheimer's disease firsthand. The
emergency is with us and in us. I write to
(08:54):
clinicians reluctant to diagnose because they can't effectively treat. Please
know the inadvertent trauma you inflict on families left confused, hurt,
and helpless. Then time runs out on the ultimate conversation
with our loved ones about end of life wishes, their
(09:15):
minds are erased. It's simply too late. I write to
reach the generation of our adult sons and daughters who
struggle to understand our lives as we care for a
loved one with Alzheimer's. They stand on the precipice and
wrestle with issues and decisions similar to the ones we faced.
(09:37):
They deserve better options and not the bankrupting burden of
our care. This is not the legacy we want for
our children, with the way any of us wish to
be remembered. I write for my grandchildren because, no matter
how hard I tried, Alzheimer's blanketed my home with sadness.
(09:59):
I know that each of them, unconditionally has been my salvation.
One day, I hope they'll read these words and appreciate
my choices. As I write these words, a faint glow
fills the room I share with Harvey. He's always present,
even though he is absent. There is an intimacy in
(10:22):
our isolation. Nonetheless, I am willing to open the door
to our room in the hope that you will find
a way inside. Only then will my story be worth
the pain of it's telling.
Speaker 1 (10:39):
Harvey's story and his bride's Meryl comer here on our
American stories.
Host
Lee Habeeb
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