If this were to be your only column incorporated into medical school and nursing school curriculums, it would become a teaching tool of immense value in enlightening future health care providers about the many dimensions of dementia…and the impact on caregivers. Everything you write about will never be found in a textbook, but hopefully someday you will publish a book about your journey with Bella.
In the meantime, you are providing insightful guidance to your Front Page readers who are in the different stages of caring for a parent, spouse or other loved one in the here-and-now…and providing solace to those who have done all that they could, for as long as they could, with or without the support of homecare resources. Nothing ever feels like it’s “enough” when caring for anyone with a terminal illness, but Alzheimer’s robs us of the capacity to use words to understand and comfort one another in the later stages.
Praying for your strength and endurance to continue your holy work…🙏
It is surprising how little has been written and published about this experience, considering how common it is. I think people avoid it, because it's so long and exhausting and because, as you say, you can't communicate with the person who is dying. Their last few years may be entirely incomprehensible to them. Without understanding what is happening to them, they can't reflect on it, and the experience becomes more pitiable than tragic.
Dear Will - Reading your columns, it occurs to me that you have found the perfect balance as Bella's caregiver. Things always could be better; however, there always has to be 'something' left for you. And, as always, "thank you" for sharing from someone who has experienced a similar situation.....
Will - That's the whole "secret sauce" to being a caregiver...you do the best you can until you are no longer able. It's not failure but rather just being human. There are no "super heroes" in caregiving just lots of love and understanding. Safety is a huge issue for dementias patients. As an FYI, many Sheriff's offices have programs for anklets/bracelets for tracking loved ones who wander and get lost. Or a GPS watch or shoe tags are available online. Black mats at front door give the illusion of a deep hole and patients/people may avoid exiting a door. Latches up high on door casings work too. Regardless, caregiving is about love and patience which you obviously have in great abundance. Bella is fortunate to have you by her side "for better or for worse". God Bless, Beth
My mom always said if you forget where you put your keys, that’s normal. If you forget what a key is for, however, it’s time to worry. Don’t borrow trouble!!
Don't be hard on yourself -- you are doing the best you can and Bella is so fortunate to have you by her side. I pray you will consider more respite care for Bella AND you. Taking good care of yourself is the best gift you can give both of you. Caring for the caregiver is so very important! I remember arranging an overnight at the Queensbury Hotel while in the midst of my husband's care. It totally revived me. It is amazing how good it feels to have no stress for a short time.
Thank you for sharing your experiences with us. What a great blessing!
I hope when you look at your city park photo you realize how extraordinary your caregiving actually is. This person has no-one. That is why they are sitting in City Park. Your two thoughts are related and unfortunately we as a society have not tackled either one well. But you are giving the most amazing love to Bella. They say that caregivers must take care of themselves too. You are doing what you can but include loving yourself and know how special you are.
You have given Bella a great gift by allowing her to stay in her home with the people she loves. Since we aren’t perfect human beings, we’re never perfect caregivers. When we become the caregivers, we do a lot of on the job learning. So cut yourself a break. Stop worrying about what kind of job you’re doing and spend more time enjoying the peaceful moments that you can grab with Bella or by yourself. Thank you for being willing to share the struggle.
You're right. I was thinking about that -- the on-the-job learning -- and while I have gotten more patient and flexible -- especially flexible -- Alzheimer's is a bear because the symptoms are constantly changing.
That it is but I learned lessons I never would have otherwise. It taught me that I have to meet a person where they are, not where I want them to be. Most times when things go sideways,it’s because I forget that lesson.
I wonder how much you wrote in perhaps some sort of diary or just notes that you kept about what was happening with you and Bella when all of this started. Your columns here are so completely descriptive and even in just the "history" of The Front Page, your lives have progressed, sadly, in many ways. We don't have the early part here but as Susan Andrews suggests regarding some sort of book, you almost have it a lot of it written right now. Because Alzheimer's and dementia in all of its forms affects such an enormous number of people your writing has been and will continue to be, extremely helpful and really encouraging to caregivers like yourself. How would you feel, Will, reading what you have written as someone facing the enormity of what you are going through now? Wouldn't it be incredibly helpful to understand that what you are experiencing, as a caregiver, is absolutely normal? No, not that there are any answers but it just seems, at least to me, to be so valuable and helpful.
I did a whole series of columns over about three years at the Post-Star, called "The Alzheimer's Chronicles." Those ran about once a month, with a podcast that Bella and I did. Those were early days. I have been working on some writing on the subject, outside of these columns. Will see where it goes.
Before the Front Page, Will was writing the Alzeheimer's Chronicles and doing an award-winning podcast with Bella so there is a pretty good record of Bella's story. I devoted a chapter to The Alzehimer's Chronicles in my book "The Last American Newspaper."
Will, listen to still small voice inside that always tells the truth and you will know that you are a good person doing the best you can with loving imperfection. Shalom.
Having been unhoused twice in my life, for reasons outside of my doing, I can say that what should be done must be centered on how close to being unhoused most people and not from the perspective those who don’t face or haven’t experienced that reality.
Serious financial hardship is not far away for many people -- one medical crisis can do it. That, too -- that we bankrupt people who are unlucky enough to need expensive medical care at some point in their lives -- is a terrible aspect of American society.
I've been fortunate never having to go thru that - but as Will says one medical crisis can do it. It's shameful that no one of our so-called representatives appears to have any thought of this problem - nor any effort to actually attempt to solve it. To think that "moving people out of sight" is the answer is beyond cruel and brutal.
I was listening to “Freakonomics” on the radio some time ago, and they said by far the absolute cheapest and best way to solve the problem of homelessness was to give people a place to live, no strings attached. It doesn’t have to be fancy. In fact, make it as basic as possible. A bedroom, a bathroom, a simple kitchen, and a door that locks. You can drink, do drugs, have pets, or do whatever a person who can afford their own place does. Governments spend millions more than they have to on the inevitable crimes, shelters, outreach programs, emergency room visits and the like, because our puritanical heritage cannot accept giving someone something for nothing. The attitude is “If they’re going to need my charity, by God, they’re gonna have to jump through hoops for it!”
If a person is chronically homeless, in that for whatever reason they cannot manage to hold down a job or dig themselves out of the hole they’re in, well, that simple basic shelter will be their home, and they can live in it for the rest of their life in whatever fashion they choose. If it’s someone just down on their luck who needs a temporary place to recover until they can move on to a bigger or better place more suited to their needs and wants, then as soon as they can, they’ll move out. I’ve seen tiny houses made out of shipping containers. It’s doable if people get over the desire to punish the homeless for “failing” at life.
For most of our lives, we are taught that when we increase our efforts in whatever task, the rewards we reap will increase in proportion - give more = get more... except as a caregiver. Caregiving, especially for those in the last stages of an illness, has a different ratio entirely: your caregiving increases continually as the other's abilities decrease - something none of us can truly prepare for until we're there...
Please don't feel guilty about taking care of yourself, you'll need your strength and stamina for the days coming. By your descriptions of Bella we had already place my mother in the Hebrew Home for the Aged located in Riverdale, NY. They featured a special unit for Alzheimer patients.
If this were to be your only column incorporated into medical school and nursing school curriculums, it would become a teaching tool of immense value in enlightening future health care providers about the many dimensions of dementia…and the impact on caregivers. Everything you write about will never be found in a textbook, but hopefully someday you will publish a book about your journey with Bella.
In the meantime, you are providing insightful guidance to your Front Page readers who are in the different stages of caring for a parent, spouse or other loved one in the here-and-now…and providing solace to those who have done all that they could, for as long as they could, with or without the support of homecare resources. Nothing ever feels like it’s “enough” when caring for anyone with a terminal illness, but Alzheimer’s robs us of the capacity to use words to understand and comfort one another in the later stages.
Praying for your strength and endurance to continue your holy work…🙏
Well said Susan.
It is surprising how little has been written and published about this experience, considering how common it is. I think people avoid it, because it's so long and exhausting and because, as you say, you can't communicate with the person who is dying. Their last few years may be entirely incomprehensible to them. Without understanding what is happening to them, they can't reflect on it, and the experience becomes more pitiable than tragic.
Few have the writing skill that will has either.
I dare say Will, no one could possibly take better care of Bella than you.
Dear Will - Reading your columns, it occurs to me that you have found the perfect balance as Bella's caregiver. Things always could be better; however, there always has to be 'something' left for you. And, as always, "thank you" for sharing from someone who has experienced a similar situation.....
I know you are not looking for this but in the world of service, you are a shining example of what it looks like.
Will - That's the whole "secret sauce" to being a caregiver...you do the best you can until you are no longer able. It's not failure but rather just being human. There are no "super heroes" in caregiving just lots of love and understanding. Safety is a huge issue for dementias patients. As an FYI, many Sheriff's offices have programs for anklets/bracelets for tracking loved ones who wander and get lost. Or a GPS watch or shoe tags are available online. Black mats at front door give the illusion of a deep hole and patients/people may avoid exiting a door. Latches up high on door casings work too. Regardless, caregiving is about love and patience which you obviously have in great abundance. Bella is fortunate to have you by her side "for better or for worse". God Bless, Beth
Bella is signed up for "Project Lifesaver" and wears the bracelet, and I'm glad you mentioned it, because it's time for me to change the battery!
Dear Will;
Your post brings tears to my eyes; for you, your family, and so many others.
My father had dementia (which may have been Alzheimer’s disease.
When I forget something like a name, or why I went to the basement, it makes me think that I might be going down that terrible path.
By sharing Bella and your stories you help shine a light on this tragic disease.
Hang in there Will (and your family) 🥰👍🥰. Thank you for sharing….
I, too, am hyper-sensitive about my own mental signs of aging, which, fortunately, seem entirely normal so far.
My mom always said if you forget where you put your keys, that’s normal. If you forget what a key is for, however, it’s time to worry. Don’t borrow trouble!!
Self-care of the caregiver is so important! Thanks for reminding us of that, and keep taking care of yourself. Peace and love!
Don't be hard on yourself -- you are doing the best you can and Bella is so fortunate to have you by her side. I pray you will consider more respite care for Bella AND you. Taking good care of yourself is the best gift you can give both of you. Caring for the caregiver is so very important! I remember arranging an overnight at the Queensbury Hotel while in the midst of my husband's care. It totally revived me. It is amazing how good it feels to have no stress for a short time.
Thank you for sharing your experiences with us. What a great blessing!
That must have been nice. A good idea
I hope when you look at your city park photo you realize how extraordinary your caregiving actually is. This person has no-one. That is why they are sitting in City Park. Your two thoughts are related and unfortunately we as a society have not tackled either one well. But you are giving the most amazing love to Bella. They say that caregivers must take care of themselves too. You are doing what you can but include loving yourself and know how special you are.
Our failure to address issues of aging in a comprehensive way is a huge disadvantage to being an American
You have given Bella a great gift by allowing her to stay in her home with the people she loves. Since we aren’t perfect human beings, we’re never perfect caregivers. When we become the caregivers, we do a lot of on the job learning. So cut yourself a break. Stop worrying about what kind of job you’re doing and spend more time enjoying the peaceful moments that you can grab with Bella or by yourself. Thank you for being willing to share the struggle.
You're right. I was thinking about that -- the on-the-job learning -- and while I have gotten more patient and flexible -- especially flexible -- Alzheimer's is a bear because the symptoms are constantly changing.
That it is but I learned lessons I never would have otherwise. It taught me that I have to meet a person where they are, not where I want them to be. Most times when things go sideways,it’s because I forget that lesson.
I wonder how much you wrote in perhaps some sort of diary or just notes that you kept about what was happening with you and Bella when all of this started. Your columns here are so completely descriptive and even in just the "history" of The Front Page, your lives have progressed, sadly, in many ways. We don't have the early part here but as Susan Andrews suggests regarding some sort of book, you almost have it a lot of it written right now. Because Alzheimer's and dementia in all of its forms affects such an enormous number of people your writing has been and will continue to be, extremely helpful and really encouraging to caregivers like yourself. How would you feel, Will, reading what you have written as someone facing the enormity of what you are going through now? Wouldn't it be incredibly helpful to understand that what you are experiencing, as a caregiver, is absolutely normal? No, not that there are any answers but it just seems, at least to me, to be so valuable and helpful.
I did a whole series of columns over about three years at the Post-Star, called "The Alzheimer's Chronicles." Those ran about once a month, with a podcast that Bella and I did. Those were early days. I have been working on some writing on the subject, outside of these columns. Will see where it goes.
Before the Front Page, Will was writing the Alzeheimer's Chronicles and doing an award-winning podcast with Bella so there is a pretty good record of Bella's story. I devoted a chapter to The Alzehimer's Chronicles in my book "The Last American Newspaper."
Will, listen to still small voice inside that always tells the truth and you will know that you are a good person doing the best you can with loving imperfection. Shalom.
Caregiving IS a skill. A learnable one. Rarely taught. Be kind to yourself. It can only help you both.
Having been unhoused twice in my life, for reasons outside of my doing, I can say that what should be done must be centered on how close to being unhoused most people and not from the perspective those who don’t face or haven’t experienced that reality.
Serious financial hardship is not far away for many people -- one medical crisis can do it. That, too -- that we bankrupt people who are unlucky enough to need expensive medical care at some point in their lives -- is a terrible aspect of American society.
I've been fortunate never having to go thru that - but as Will says one medical crisis can do it. It's shameful that no one of our so-called representatives appears to have any thought of this problem - nor any effort to actually attempt to solve it. To think that "moving people out of sight" is the answer is beyond cruel and brutal.
I was listening to “Freakonomics” on the radio some time ago, and they said by far the absolute cheapest and best way to solve the problem of homelessness was to give people a place to live, no strings attached. It doesn’t have to be fancy. In fact, make it as basic as possible. A bedroom, a bathroom, a simple kitchen, and a door that locks. You can drink, do drugs, have pets, or do whatever a person who can afford their own place does. Governments spend millions more than they have to on the inevitable crimes, shelters, outreach programs, emergency room visits and the like, because our puritanical heritage cannot accept giving someone something for nothing. The attitude is “If they’re going to need my charity, by God, they’re gonna have to jump through hoops for it!”
If a person is chronically homeless, in that for whatever reason they cannot manage to hold down a job or dig themselves out of the hole they’re in, well, that simple basic shelter will be their home, and they can live in it for the rest of their life in whatever fashion they choose. If it’s someone just down on their luck who needs a temporary place to recover until they can move on to a bigger or better place more suited to their needs and wants, then as soon as they can, they’ll move out. I’ve seen tiny houses made out of shipping containers. It’s doable if people get over the desire to punish the homeless for “failing” at life.
For most of our lives, we are taught that when we increase our efforts in whatever task, the rewards we reap will increase in proportion - give more = get more... except as a caregiver. Caregiving, especially for those in the last stages of an illness, has a different ratio entirely: your caregiving increases continually as the other's abilities decrease - something none of us can truly prepare for until we're there...
Please don't feel guilty about taking care of yourself, you'll need your strength and stamina for the days coming. By your descriptions of Bella we had already place my mother in the Hebrew Home for the Aged located in Riverdale, NY. They featured a special unit for Alzheimer patients.