‘I am on the road to transform and become someone or something else.’ A lawyer, writer, activist, and actor, on beginning the journey that follows an Alzheimer's diagnosis.
For anyone receiving this diagnosis and for the loved ones, please do research on how much is being done about this. The doctors tell us they can solve any disease, but we just are not giving them enough money for research. In other words, the research on this is very advanced. It is a terrifying diagnosis because it is a big unknown unless you have dealt with it in your own family or circle. There are many medical advances about delaying symptoms. Also, family members will be told by doctors, that is " not your mother anymore." This is completely untrue: if you know the person, they are the same and do not change in many ways. They are still there.
In training to be caregivers, we are told that we have to enter into the world of the loved one: we should try to see what they are perceiving. From many of us who have been caregivers for decades, please chart your own path. The experts who are the CNA's and nurses taking care of people directly, will tell you that there is plenty of life, love and laughter left. The trend is to keep patients in the home: unlike previous beliefs, it is known that an alz patient will remember the familiar layout of the home and be much better.
And there are wonderful, compassionate helpers or residences, all specially trained and designed for comfort, if the caregiver cannot be there.
At age 67 (me) or age 76, we are going to get very difficult diagnoses. If we stopped war and put all of our resources into medicine and research, it is only a matter of time before all gene mysteries are solved so that we will not have serious diseases. In the 1960's, we believed that we could have peace so why should we give up on the dream of worldwide peace? Humans are not that limited, it will happen.
It is a difficult diagnosis. A caregiver knows that it is a very slow process and it can be slowed by many many things. There is new research on preventing more plaque and reversing it. Have a lot of hope because there are many good days still to come, it is just different that is all, when you enter into that world that our loved one is in.
A son of a doctor knows that the human body is incredible, that it can self-heal in many ways. The path of the patient from here should be a loving one, adjusted to the person's needs. Enter into their world and it is fantastic in many ways. It is not all loss by any means. It is more a chance for intimacy, compassion, sharing, and exploring how we all age, we are all vulnerable. For the loved one, they are not necessarily aware of what is happening so they do not have anxiety about it. Support medical research and end the wars that use all the resources we have on the planet, that could be used to solve these human problems. https://www.alz.org/research
Diana, thank you for this informative, generous, and wise reply. I will share it with my friends.
I mentioned in the recent comment thread about the horrific Uvalde gun massacre that it should *not* take direct personal involvement in tragedies or misfortune to be able to empathize with them. (As a boomer-era white man, I should care about people of all ages and positions in the world; as an American I should understand the struggles of people in every location; as a person with no — known — health issues at the moment, I should put myself in the position of people who were born with or have suffered physical breakdowns. Etc) Nonetheless it commanded Deb's and my attention to think that two of our grandchildren are also enrolled in public elementary schools in Texas right now. There but for the grace of God ...
When it comes to Sam Simon's brave testimony, and your generous response, this is not — to my knowledge or awareness — a point of particular vulnerability in our lineage. One of my grandmothers had a very hard Depression-era life, but made her (meager) living as a constructor of double-crostics and other word puzzles into her 80s. My father had a sudden all-systems collapse just before his death at age 83. But just a few weeks before that, he was doing computer repairs and internet SYSOP duties in the community where he lived, and reading nonstop. All of my other forebears suffered failure of other bodily system before they had any noticeable mental decline.
But, as I mentioned in the introduction to Sam's post, all of us who have lived in the world of reading, writing, expressing, being mentally *there* reflects on the prospect ahead of him. (This, of course, has been very much Sam Simon's world.) There but for the grace of God ...
I was recently diagnosed with leukemia (the good kind, my oncologist tells me, that won't affect me for a while). Coincidentally, I then read an article about the ancient phrase memento mori ('remember that you will die'). Although I didn't need reminding, I googled the concept which, in brief, is that thinking about the inevitability of your death forces you to savor each of your days and thus enjoy the time you have left. The search results included an ad for a skull ring that I thought would give me a constant prod to do exactly that. I love my new ring which for as many days as I have left will reside on my left index finger.
Belated thanks for this. Just a few months ago, I was reading Muriel Spark's novel 'Memento Mori,' which is meant to be gruesomely comic but also has the deeper reminders that you give. I am grateful for the link below.
And of course very good wishes on your "good kind" diagnosis.
He's incredibly brave. I'm so frightened by that disease and that prospect. I'm dealing with my 92 year old mother now whose short term memory is fading fast. I wish him the very best as he navigates this terrible path and my heart goes out to his wife who will face real difficulties if the disease progresses in the usual way.
Inspiring, creative bravery
Bruce, belatedly, thanks on my behalf, and of course on Sam Simon's. Jim
For anyone receiving this diagnosis and for the loved ones, please do research on how much is being done about this. The doctors tell us they can solve any disease, but we just are not giving them enough money for research. In other words, the research on this is very advanced. It is a terrifying diagnosis because it is a big unknown unless you have dealt with it in your own family or circle. There are many medical advances about delaying symptoms. Also, family members will be told by doctors, that is " not your mother anymore." This is completely untrue: if you know the person, they are the same and do not change in many ways. They are still there.
In training to be caregivers, we are told that we have to enter into the world of the loved one: we should try to see what they are perceiving. From many of us who have been caregivers for decades, please chart your own path. The experts who are the CNA's and nurses taking care of people directly, will tell you that there is plenty of life, love and laughter left. The trend is to keep patients in the home: unlike previous beliefs, it is known that an alz patient will remember the familiar layout of the home and be much better.
And there are wonderful, compassionate helpers or residences, all specially trained and designed for comfort, if the caregiver cannot be there.
At age 67 (me) or age 76, we are going to get very difficult diagnoses. If we stopped war and put all of our resources into medicine and research, it is only a matter of time before all gene mysteries are solved so that we will not have serious diseases. In the 1960's, we believed that we could have peace so why should we give up on the dream of worldwide peace? Humans are not that limited, it will happen.
It is a difficult diagnosis. A caregiver knows that it is a very slow process and it can be slowed by many many things. There is new research on preventing more plaque and reversing it. Have a lot of hope because there are many good days still to come, it is just different that is all, when you enter into that world that our loved one is in.
A son of a doctor knows that the human body is incredible, that it can self-heal in many ways. The path of the patient from here should be a loving one, adjusted to the person's needs. Enter into their world and it is fantastic in many ways. It is not all loss by any means. It is more a chance for intimacy, compassion, sharing, and exploring how we all age, we are all vulnerable. For the loved one, they are not necessarily aware of what is happening so they do not have anxiety about it. Support medical research and end the wars that use all the resources we have on the planet, that could be used to solve these human problems. https://www.alz.org/research
Diana, thank you for this informative, generous, and wise reply. I will share it with my friends.
I mentioned in the recent comment thread about the horrific Uvalde gun massacre that it should *not* take direct personal involvement in tragedies or misfortune to be able to empathize with them. (As a boomer-era white man, I should care about people of all ages and positions in the world; as an American I should understand the struggles of people in every location; as a person with no — known — health issues at the moment, I should put myself in the position of people who were born with or have suffered physical breakdowns. Etc) Nonetheless it commanded Deb's and my attention to think that two of our grandchildren are also enrolled in public elementary schools in Texas right now. There but for the grace of God ...
When it comes to Sam Simon's brave testimony, and your generous response, this is not — to my knowledge or awareness — a point of particular vulnerability in our lineage. One of my grandmothers had a very hard Depression-era life, but made her (meager) living as a constructor of double-crostics and other word puzzles into her 80s. My father had a sudden all-systems collapse just before his death at age 83. But just a few weeks before that, he was doing computer repairs and internet SYSOP duties in the community where he lived, and reading nonstop. All of my other forebears suffered failure of other bodily system before they had any noticeable mental decline.
But, as I mentioned in the introduction to Sam's post, all of us who have lived in the world of reading, writing, expressing, being mentally *there* reflects on the prospect ahead of him. (This, of course, has been very much Sam Simon's world.) There but for the grace of God ...
I appreciate your guidance.
Thank you for your kind reply! I am sure that everyone reading this substack appreciates your personal sharing very much!
I was recently diagnosed with leukemia (the good kind, my oncologist tells me, that won't affect me for a while). Coincidentally, I then read an article about the ancient phrase memento mori ('remember that you will die'). Although I didn't need reminding, I googled the concept which, in brief, is that thinking about the inevitability of your death forces you to savor each of your days and thus enjoy the time you have left. The search results included an ad for a skull ring that I thought would give me a constant prod to do exactly that. I love my new ring which for as many days as I have left will reside on my left index finger.
Belated thanks for this. Just a few months ago, I was reading Muriel Spark's novel 'Memento Mori,' which is meant to be gruesomely comic but also has the deeper reminders that you give. I am grateful for the link below.
And of course very good wishes on your "good kind" diagnosis.
If anyone is interested, here is the article I read. https://medium.com/improving-together/want-to-be-happier-repeat-this-ancient-four-word-phrase-every-single-day-a64547212284
a beautiful sharing, thank you!
“... [we can] stop measuring days by degree of productivity and start experiencing by degree of presence.” - Alan Watts
He's incredibly brave. I'm so frightened by that disease and that prospect. I'm dealing with my 92 year old mother now whose short term memory is fading fast. I wish him the very best as he navigates this terrible path and my heart goes out to his wife who will face real difficulties if the disease progresses in the usual way.
Dan, thank you. I really admire Sam Simon for giving this honest window into a very painful situation.
Wow. So sad
Tom, yes. Also very brave, as you know.