Isn't it a blessing to look beyond the awfulness of so many aspects of the world around us and experience the beautiful things that count: love, patience, devotion, truth, endurance. Things that really count when all seems lost. Thank you, Jack, for bringing us back to what really matters.
This is beautifully said, Jan...and exactly why I wrote it. In a world that feels loud, cruel, and upside-down, that woman’s daily choices...love...patience...devotion...truth...endurance...are the quiet kind of courage that holds the roof up for the rest of us.
Caregivers are the unsung heroes of our time. They don’t get parades. They don’t get headlines. They get 3 a.m. and empty gas tanks and a smile they have to manufacture from nothing. And still...they show up. That’s what “what really matters” looks like when the cameras are off.
Thank you for this reminder. If you know a caregiver...check on them today. Drop a meal, sit for an hour...send a note. Small acts, big mercy. That’s how we keep the light on.
You are so right. It is so great to find the good in what is out there. Unfortunately, in most families, there is little assistance the state helps with. I suggest a small group of friends or church group is helpful or family group. Social workers can help if you can find one. Ask around at a community hospital.
Jack-beautifully written. You know I’m fighting with you. You’ve seen my front door. My wife of 52 years died nine months ago from Alzheimer’s. I know the pain I’ve seen the suffering. Thanks so much for telling the story. I admire this couple deeply.
Thank you, Tom. I know your front door...and I have watched your fight before...and I’m humbled you shared this piece of your story here.
Fifty-two years together is a lifetime of devotion most people can’t even imagine...and I can only begin to grasp the pain and the strength it takes to carry that loss.
You know better than most the cost of love...and also its power. That couple’s story is yours too...and the fact you can read it...honor it...and keep fighting after walking through your own valley…that speaks volumes about who you are.
I admire you deeply. Your wife’s legacy lives through you...through every stand you take... through the light you refuse to put out. Thank you for reminding us what love looks like when it’s tested all the way to the end.
I must admit...I had hoped to finish this reply without getting tears in my eyes. I failed.
I kiss my wife every day and tell her I love her because she deserves to be reinforced of my commitment just in case there could be a day I won’t be able to communicate those thoughts and feelings. Thanks for a different look at what’s important.
That’s powerful, Bill....and it’s exactly the kind of daily choice that defines love. Not just the big gestures...but the steady reinforcement...the reminders that say, “I’m here. I’m with you. You matter.”
The truth is...none of us know if or when a day will come when words might fail us. What you’re doing ensures your wife never has to wonder. That’s commitment, lived in real time.
Thank you for sharing this. It’s a reminder for all of us to stop assuming tomorrow will always give us another chance...and to speak the words today.
Thanks Jack, I grabbed her hand almost 48 years ago with vows of marriage and have never looked back, what's the point of that, just look forward to another day with what is truly important and that is a life with someone you love. Pretty simple.
I had to deal with Alzheimer's patients as an RN working in the Home Health Care industry doing admissions and visits to themes. I have always been in awe how the caregiver was able to keep going .The scary ones were the ones whose spouse had become an agitated, violent one. Those we had toward with social services to get placed. Irt was so sad. I had a patient whose spouse tried to kill her. The worst thing was their longtime doctor fired her husband because "he did not do what he was instructed to do". He was not capable by that time and the wife had been asking for help. She managed to get a 911 callout the night he tried toil her and she survived amazingly but it was just sad to see her having to live in constant pain from the beating he gave her and how the doctor did not step the way she should have. I am glad the ones in yo writing are not in that situation. Most of my patients were just very confused and forgetful and required 24 hr supervision. I believe my other half is entering the beginning stages. I am going to have to get our primary to have him tested.
Thank you for sharing this powerful and painful perspective, Teri. What you describe...those heartbreaking situations where caregivers are pushed past human limits... and where the system fails to step in...is something far too many families face in silence.
Your story underscores just how fragile and dangerous the line can become when Alzheimer’s progresses into agitation or violence...and how desperately caregivers need real support...not abandonment by doctors or institutions.
I’m deeply sorry you witnessed so much of this firsthand...and even more so that you may now be entering the beginning stages with your own partner. It takes enormous courage to recognize it and push for testing early. Please know that this community stands with you. You’re not alone in this. I promise.
Thank you that means a lot. Trying to balance my time is challenging with where our country is currently. It is a full time job between MD appts for the various conditions he has, the ned to be present if the days are bad and he is not safe alone. Then just the regular day to day things you do like laundry , meals, taking care of myself and the dogs, My md appts and food shopping. The getting out of the ouse is helpful and I do have friends and neighbors I communicate with. Walking the dogs in the evening the the heat is dissipating.. we are having feels like temps in the low 100"s ion west central Florida . Luckily we are near the coast of the Gulf of Mexico so we do get offshore breezes. I am lucky in that i am prepared by having been in the nursing profession. My son and his wife are 2 blocks away and they are working full time as nurses, he is a nurse anesthetist soil only ask for help when I truly need it. They have a daughter starting her masters program a University of Central Florida and then their son is 24 and has autism. This administration is going to be hurting a lot of families like theirs when the autism limits their ability to ever be independent and they have to be on medicaid when they age out of their parents insurance. SO very cruel and mean. Makes me sad to know they work hard and their son is well cared for but we all know health insurance is vital. Thanks for listening to me ramble.
Thank you for writing about Alzheimer’s, and yes it does make one consider mortality and who will be there for me and OMG what if...I’m alone? ...my partner abandons me and my dogs? ....etc. It’s easy to spin out on this.
I know my APOE status, and am doing everything I can, every day, to stop the disease from starting. There are lots of valid interventions now to lower the risk. So that feels good, doing something.
When I lost my only child to suicide 3 years ago, I thought I would die. During that dark time I discovered Pauline Boss, a clinical psychologist I think, whose main body of work was on “ambiguous loss,” a term she coined. It’s very relevant for caregivers of dementia patients.. grieving the ongoing loss of a loved one’s consciousness while caring for the body that lives on--it’s a special kind of torture. Gone but not gone, so how to grieve? She’s a treasure, worth looking up.
Also, mortality does suck. So does gravity. Who knew??
Wish you deep restful sleep. Know that you are helping guide thousands of us with your steady thoughts through these turbulent times. Know this: “You are deeply loved and cherished forever. You will be taken care of. You have nothing to fear.”
Thank you for opening your heart and sharing so much of your story here, Annie. What you’ve been through...the unthinkable grief of losing your child...and now the weight of thinking about Alzheimer’s and “ambiguous loss”...is more than most people could even imagine carrying.
And yet, you’ve turned your pain into something powerful: awareness...action...and the willingness to share wisdom with others. That takes extraordinary courage.
You’re right about Pauline Boss...her work has been a lifeline for many, and your reminder about “ambiguous loss” is one so many of us need to hear. It names the exact kind of grief that otherwise has no language. Ambiguous loss is a different kind of "animal," and her contributions in this area are massive.
And you’re also right: mortality does suck. (Gravity too!) But knowing your APOE status.. taking action every day..refusing to just “wait and see”...that’s a strength most people never summon. I chose to do some DNA testing recently for a health concern...and was able to check my APOE status. Personally...I felt it was important thing to do.
Thank you for your kind words to me...and for reminding this whole community that love... steadiness...and resilience can shine even through the darkest losses. You’re living proof.
People/patients are amazing, they really are.. each one has volumes of stories, incredible bravery and courage, underwater demolition in the arctic, building rockets for NASA, being 1 of 13 or so children, seriously walking to school miles in snow, combat, sharks, flying bombers, being engaged to 4 men at once (that was Mom), it’s just mind boggling. People/patients silently wanting to share their stories with someone.. i love listening, and what a gift! What a collective wisdom we have!
That, that helps me keep getting up in the am. I feel fortunate to be here (usually), now. So grateful to have found a relatively sane voice in you! Many thanks, and carpe diem;-)
My mom was diagnosed with an early onset type of Dementia called PICKS Disease. She was 58. A year older than I am now. My grandfather (her father) died from Dementia. I watched the strongest, most kindest man I have ever known slip away and it was one of the hardest things I've ever been through in my life. You see, my grandfather always knew who I was. He never forgot me and he even knew who my best friend was. With my mom, it was the complete opposite. I was the first kid she forgot and because I look like my bio-dad, I am no longer permitted to see her because she has "episodes" after seeing me.
I appreciate you sharing this story. I can't imagine what my step-dad is going through with my mom. I never respected that man until he stepped up and took care of my mom refusing to put her in a memory care facility. I have mad respect for him for that.
Thank you for sharing something so deeply personal, Libbey. What you’ve lived through with both your grandfather and now your mom is heartbreaking...and the contrast between those experiences makes it all the harder. To be the first one your mom forgot… there aren’t words for the kind of pain that leaves.
And yet, what you say about your step-dad stepping up speaks volumes. In the hardest... cruelest season...he’s showing a kind of love that commands respect. That kind of devotion is rare...and it deserves to be seen and honored.
I’m grateful you shared this here...it gives weight and humanity to the story I told...and reminds us all of the everyday heroes carrying impossible loads with courage.
To work in service has always been my passion. Everyone has gifts. People are fascinating and have amazing skill and talent. Spending my life around such compassionate and kind people has truly been inspiring. I spent 13 years in college, grad and doctoral program, but learned the best lessons from others I was working with.
What a beautiful way to put it, Cynthia. That true wisdom isn’t just found in classrooms or degrees...but in the people we walk alongside every day.
The way you’ve given your life in service...and the way you see the gifts in others...speaks volumes about who you are. Thirteen years of study is remarkable...but your words remind us that the real lessons...the ones that stay with us...come from compassion... kindness...and human connection. Thank you for sharing this reminder..and for living it.
That means the world to me, Larry...thank you. Knowing the work here fuels you...reminds you...and strengthens your voice is exactly why I do it. We may be up against a storm...but voices joined together have always been more powerful than the wind. I’m grateful you’re standing in it with me.
I’m glad this one gave you a breather, Jeff....because you’re right, the Trump mess can feel all-consuming. But you also nailed it: there’s no letting up. Every single day matters. The other side counts on fatigue. We win by refusing to give them the satisfaction. Thanks for staying in the fight with me. Truly!
Thank you, Jack. There are three couples in our circles with this exact issue. Two of the men we’ve known a long time, a neighbor and a church friend. Max is a semi-famous artist who can no longer paint. The newer friend was a physician who had to retire early. I went to nursing school where he worked. We have the same conversation every time I see him. But he still loves to sing. Our neighbor always jogged, but now he can’t be left alone. These men are older than your friend, but not much. The women are saints. One relentlessly cheerful, one grumpy but stoic, one still in shock. It does do one good to consider something other than rage. 🙏🏼🌻🇺🇦💕👹
Thank you for sharing these glimpses of the couples in your own circle, Rachel. What you describe...the artist who can’t paint...the physician who had to step away...the neighbor who can’t be left alone...brings home just how many lives are being reshaped by this disease. And you’re right: the women who keep carrying on...each in their own way...are nothing short of saints.
Your words also strike at something vital...that it does us good to pause...even in the middle of political rage...to remember love...resilience...and humanity. Those things are what make the fight worth it.
While I am here with you through “THINK and thin…” I’m also here…through THICK and thin…as well. 😉
You be well, Jack. We are here with you.
Thank you, Bill!
This is beautiful. In every way. My brother has ALS and I view my sister-in-law like Karen.
💙💙
Isn't it a blessing to look beyond the awfulness of so many aspects of the world around us and experience the beautiful things that count: love, patience, devotion, truth, endurance. Things that really count when all seems lost. Thank you, Jack, for bringing us back to what really matters.
This is beautifully said, Jan...and exactly why I wrote it. In a world that feels loud, cruel, and upside-down, that woman’s daily choices...love...patience...devotion...truth...endurance...are the quiet kind of courage that holds the roof up for the rest of us.
Caregivers are the unsung heroes of our time. They don’t get parades. They don’t get headlines. They get 3 a.m. and empty gas tanks and a smile they have to manufacture from nothing. And still...they show up. That’s what “what really matters” looks like when the cameras are off.
Thank you for this reminder. If you know a caregiver...check on them today. Drop a meal, sit for an hour...send a note. Small acts, big mercy. That’s how we keep the light on.
-Jack
You are so right. It is so great to find the good in what is out there. Unfortunately, in most families, there is little assistance the state helps with. I suggest a small group of friends or church group is helpful or family group. Social workers can help if you can find one. Ask around at a community hospital.
Jack-beautifully written. You know I’m fighting with you. You’ve seen my front door. My wife of 52 years died nine months ago from Alzheimer’s. I know the pain I’ve seen the suffering. Thanks so much for telling the story. I admire this couple deeply.
Thank you, Tom. I know your front door...and I have watched your fight before...and I’m humbled you shared this piece of your story here.
Fifty-two years together is a lifetime of devotion most people can’t even imagine...and I can only begin to grasp the pain and the strength it takes to carry that loss.
You know better than most the cost of love...and also its power. That couple’s story is yours too...and the fact you can read it...honor it...and keep fighting after walking through your own valley…that speaks volumes about who you are.
I admire you deeply. Your wife’s legacy lives through you...through every stand you take... through the light you refuse to put out. Thank you for reminding us what love looks like when it’s tested all the way to the end.
I must admit...I had hoped to finish this reply without getting tears in my eyes. I failed.
-Jack
Here you go Jack, the obit I write for the love of my life.
https://codeymackeyfh.com/tribute/details/985/Margaret-Schell/obituary.html#tribute-start
One wall in my bedroom.
Jack- I’m humbled that you took the time to write me such a personal, thoughtful note. Thank you. I appreciate all that you’re doing. Tom
I kiss my wife every day and tell her I love her because she deserves to be reinforced of my commitment just in case there could be a day I won’t be able to communicate those thoughts and feelings. Thanks for a different look at what’s important.
That’s powerful, Bill....and it’s exactly the kind of daily choice that defines love. Not just the big gestures...but the steady reinforcement...the reminders that say, “I’m here. I’m with you. You matter.”
The truth is...none of us know if or when a day will come when words might fail us. What you’re doing ensures your wife never has to wonder. That’s commitment, lived in real time.
Thank you for sharing this. It’s a reminder for all of us to stop assuming tomorrow will always give us another chance...and to speak the words today.
-Jack
Thanks Jack, I grabbed her hand almost 48 years ago with vows of marriage and have never looked back, what's the point of that, just look forward to another day with what is truly important and that is a life with someone you love. Pretty simple.
I had to deal with Alzheimer's patients as an RN working in the Home Health Care industry doing admissions and visits to themes. I have always been in awe how the caregiver was able to keep going .The scary ones were the ones whose spouse had become an agitated, violent one. Those we had toward with social services to get placed. Irt was so sad. I had a patient whose spouse tried to kill her. The worst thing was their longtime doctor fired her husband because "he did not do what he was instructed to do". He was not capable by that time and the wife had been asking for help. She managed to get a 911 callout the night he tried toil her and she survived amazingly but it was just sad to see her having to live in constant pain from the beating he gave her and how the doctor did not step the way she should have. I am glad the ones in yo writing are not in that situation. Most of my patients were just very confused and forgetful and required 24 hr supervision. I believe my other half is entering the beginning stages. I am going to have to get our primary to have him tested.
Thank you for sharing this powerful and painful perspective, Teri. What you describe...those heartbreaking situations where caregivers are pushed past human limits... and where the system fails to step in...is something far too many families face in silence.
Your story underscores just how fragile and dangerous the line can become when Alzheimer’s progresses into agitation or violence...and how desperately caregivers need real support...not abandonment by doctors or institutions.
I’m deeply sorry you witnessed so much of this firsthand...and even more so that you may now be entering the beginning stages with your own partner. It takes enormous courage to recognize it and push for testing early. Please know that this community stands with you. You’re not alone in this. I promise.
-Jack
Thank you that means a lot. Trying to balance my time is challenging with where our country is currently. It is a full time job between MD appts for the various conditions he has, the ned to be present if the days are bad and he is not safe alone. Then just the regular day to day things you do like laundry , meals, taking care of myself and the dogs, My md appts and food shopping. The getting out of the ouse is helpful and I do have friends and neighbors I communicate with. Walking the dogs in the evening the the heat is dissipating.. we are having feels like temps in the low 100"s ion west central Florida . Luckily we are near the coast of the Gulf of Mexico so we do get offshore breezes. I am lucky in that i am prepared by having been in the nursing profession. My son and his wife are 2 blocks away and they are working full time as nurses, he is a nurse anesthetist soil only ask for help when I truly need it. They have a daughter starting her masters program a University of Central Florida and then their son is 24 and has autism. This administration is going to be hurting a lot of families like theirs when the autism limits their ability to ever be independent and they have to be on medicaid when they age out of their parents insurance. SO very cruel and mean. Makes me sad to know they work hard and their son is well cared for but we all know health insurance is vital. Thanks for listening to me ramble.
Thank you for writing about Alzheimer’s, and yes it does make one consider mortality and who will be there for me and OMG what if...I’m alone? ...my partner abandons me and my dogs? ....etc. It’s easy to spin out on this.
I know my APOE status, and am doing everything I can, every day, to stop the disease from starting. There are lots of valid interventions now to lower the risk. So that feels good, doing something.
When I lost my only child to suicide 3 years ago, I thought I would die. During that dark time I discovered Pauline Boss, a clinical psychologist I think, whose main body of work was on “ambiguous loss,” a term she coined. It’s very relevant for caregivers of dementia patients.. grieving the ongoing loss of a loved one’s consciousness while caring for the body that lives on--it’s a special kind of torture. Gone but not gone, so how to grieve? She’s a treasure, worth looking up.
Also, mortality does suck. So does gravity. Who knew??
Wish you deep restful sleep. Know that you are helping guide thousands of us with your steady thoughts through these turbulent times. Know this: “You are deeply loved and cherished forever. You will be taken care of. You have nothing to fear.”
Thank you for opening your heart and sharing so much of your story here, Annie. What you’ve been through...the unthinkable grief of losing your child...and now the weight of thinking about Alzheimer’s and “ambiguous loss”...is more than most people could even imagine carrying.
And yet, you’ve turned your pain into something powerful: awareness...action...and the willingness to share wisdom with others. That takes extraordinary courage.
You’re right about Pauline Boss...her work has been a lifeline for many, and your reminder about “ambiguous loss” is one so many of us need to hear. It names the exact kind of grief that otherwise has no language. Ambiguous loss is a different kind of "animal," and her contributions in this area are massive.
And you’re also right: mortality does suck. (Gravity too!) But knowing your APOE status.. taking action every day..refusing to just “wait and see”...that’s a strength most people never summon. I chose to do some DNA testing recently for a health concern...and was able to check my APOE status. Personally...I felt it was important thing to do.
Thank you for your kind words to me...and for reminding this whole community that love... steadiness...and resilience can shine even through the darkest losses. You’re living proof.
-Jack
People/patients are amazing, they really are.. each one has volumes of stories, incredible bravery and courage, underwater demolition in the arctic, building rockets for NASA, being 1 of 13 or so children, seriously walking to school miles in snow, combat, sharks, flying bombers, being engaged to 4 men at once (that was Mom), it’s just mind boggling. People/patients silently wanting to share their stories with someone.. i love listening, and what a gift! What a collective wisdom we have!
That, that helps me keep getting up in the am. I feel fortunate to be here (usually), now. So grateful to have found a relatively sane voice in you! Many thanks, and carpe diem;-)
My mom was diagnosed with an early onset type of Dementia called PICKS Disease. She was 58. A year older than I am now. My grandfather (her father) died from Dementia. I watched the strongest, most kindest man I have ever known slip away and it was one of the hardest things I've ever been through in my life. You see, my grandfather always knew who I was. He never forgot me and he even knew who my best friend was. With my mom, it was the complete opposite. I was the first kid she forgot and because I look like my bio-dad, I am no longer permitted to see her because she has "episodes" after seeing me.
I appreciate you sharing this story. I can't imagine what my step-dad is going through with my mom. I never respected that man until he stepped up and took care of my mom refusing to put her in a memory care facility. I have mad respect for him for that.
Thank you for sharing something so deeply personal, Libbey. What you’ve lived through with both your grandfather and now your mom is heartbreaking...and the contrast between those experiences makes it all the harder. To be the first one your mom forgot… there aren’t words for the kind of pain that leaves.
And yet, what you say about your step-dad stepping up speaks volumes. In the hardest... cruelest season...he’s showing a kind of love that commands respect. That kind of devotion is rare...and it deserves to be seen and honored.
I’m grateful you shared this here...it gives weight and humanity to the story I told...and reminds us all of the everyday heroes carrying impossible loads with courage.
-Jack
Thank you, Jack. 💙
WOW! Beautiful! Thank you❤️🙏
My pleasure, Vivian. You're welcome. And...thank YOU.
-Jack
To work in service has always been my passion. Everyone has gifts. People are fascinating and have amazing skill and talent. Spending my life around such compassionate and kind people has truly been inspiring. I spent 13 years in college, grad and doctoral program, but learned the best lessons from others I was working with.
What a beautiful way to put it, Cynthia. That true wisdom isn’t just found in classrooms or degrees...but in the people we walk alongside every day.
The way you’ve given your life in service...and the way you see the gifts in others...speaks volumes about who you are. Thirteen years of study is remarkable...but your words remind us that the real lessons...the ones that stay with us...come from compassion... kindness...and human connection. Thank you for sharing this reminder..and for living it.
-Jack
This why I am a paid subscriber. Everything you write is useful to me. It reminds me why we keep raising our voices against the storm!
That means the world to me, Larry...thank you. Knowing the work here fuels you...reminds you...and strengthens your voice is exactly why I do it. We may be up against a storm...but voices joined together have always been more powerful than the wind. I’m grateful you’re standing in it with me.
-Jack
Great story.. nice relief from the Trump mess. It’s good to see something else but we gotta keep the fight every day no let up we can’t let them win
I’m glad this one gave you a breather, Jeff....because you’re right, the Trump mess can feel all-consuming. But you also nailed it: there’s no letting up. Every single day matters. The other side counts on fatigue. We win by refusing to give them the satisfaction. Thanks for staying in the fight with me. Truly!
-Jack
Beautiful essay Jack. Thanks for the reminder
Robert...I appreciate that. You're most welcome.
-Jack
Thank you, Jack. There are three couples in our circles with this exact issue. Two of the men we’ve known a long time, a neighbor and a church friend. Max is a semi-famous artist who can no longer paint. The newer friend was a physician who had to retire early. I went to nursing school where he worked. We have the same conversation every time I see him. But he still loves to sing. Our neighbor always jogged, but now he can’t be left alone. These men are older than your friend, but not much. The women are saints. One relentlessly cheerful, one grumpy but stoic, one still in shock. It does do one good to consider something other than rage. 🙏🏼🌻🇺🇦💕👹
Thank you for sharing these glimpses of the couples in your own circle, Rachel. What you describe...the artist who can’t paint...the physician who had to step away...the neighbor who can’t be left alone...brings home just how many lives are being reshaped by this disease. And you’re right: the women who keep carrying on...each in their own way...are nothing short of saints.
Your words also strike at something vital...that it does us good to pause...even in the middle of political rage...to remember love...resilience...and humanity. Those things are what make the fight worth it.
-Jack
Thank you Jack I needed that story it gave me hope.
Bernice...you're welcome. I think we all do.
Nice! Thanks for the reminder!
Thank you, Lori. You're welcome. We...will keep marching forward.