The Forgotten: Dementia and the Right to Die - Sally’s Story
Almost eight million older Americans suffer from dementia, approximately two-thirds of them with Alzheimer’s Disease. Many older and not so old people fear they too may experience dementia in their later years. Or, they may end up as a caregiver for a family member with dementia.
My wife, Sally, suffered and died after a decade-long siege of dementia. Her experiences retold here, along with those of my own as her caregiver, can help the many people who find themselves making a similar end-of-life journey. To assist them, I propose and discuss a humane way to deal with dementia at the end of life, one that Sally believed in and would have enthusiastically endorsed for herself. The solution is called the Right to Die. Because Sally could not exercise her right to die, we had to endure her traumatic final years in memory care as she struggled with her steadily worsening affliction.
My wife, Sally, suffered and died after a decade-long siege of dementia. Her experiences retold here, along with those of my own as her caregiver, can help the many people who find themselves making a similar end-of-life journey. To assist them, I propose and discuss a humane way to deal with dementia at the end of life, one that Sally believed in and would have enthusiastically endorsed for herself. The solution is called the Right to Die. Because Sally could not exercise her right to die, we had to endure her traumatic final years in memory care as she struggled with her steadily worsening affliction.
People like Sally and me are “The Forgotten.” Those with dementia forget who they are, who they once were, and who we their caregivers are, not to mention the activities that gave meaning to their lives. Both those with dementia and their caregivers are often forgotten by long-time friends and even family because sustaining relationships with those suffering from dementia, along with those who attend to them, is extremely challenging. Coupled with this, our culture—through its failure to remember and properly respect the elderly—means that a large aged population nearing the end of life is forgotten. The challenge is finding ways to treat these people with the dignity and respect they deserve.
This book needs to get into the hands of those suffering from dementia and their caregivers, who may want to exercise the right-to-die option on behalf of their afflicted loved ones. Nobody knows who is going to end up with dementia. Sally represents all of us who want to die with dignity, to have a say in when and how we want to die. And who doesn’t want to die with dignity? This reality, accompanied by not knowing who will get dementia, encourages readers to set up their end-of-life plans before dementia arrives unexpectedly at their doorstep.
This book is the only book on the market that, in addition to targeting people with dementia and their caregivers, includes the millions more who might one day experience dementia. This book is meant for those who will need this information before it is too late for them to be able to make good use of it.
Both before and after my accomplished wife, Sally, a longtime believer in an individual’s right to die, was diagnosed with dementia, she told me firmly that “when I am no longer the person I once was, pull the plug.” But there was no plug to pull. As she made her way through the ever-worsening stages of dementia, she regularly cried out, begging: “Help me, help me! I’m dying. I want to die!” But legally, nothing could be done by me or by anyone else to bring about the kind of death she wanted.
This meant I had to watch her live out the final years of life plagued by dementia-induced agitation and anxiety, suffering from needless pain and discomfort, and experiencing the inevitable loss of dignity and autonomy she so feared. That does not have to happen. This book will give those with dementia, and their loved ones, a way to live and die peacefully and without pain.
For this to happen, we need “right-to-die” legislation. This book helps readers specify in an amendment to their Advanced Medical Directive, what I call a “Dementia: Right to Die Directive,” describing how and when they want to die. This approach, encouraged and explained in these pages, would permit a person’s Durable Power of Attorney for Health Care after determining the demented person was no longer the person she once was, to obtain a lethal medication and authorize a physician or perhaps a physician’s assistant to administer this medication without fear of legal action against them.
Finally, readers are given an unvarnished glimpse at what caregivers must contend with, even as they try to understand what motivates their loved ones to speak and act as they do. This does not mean there are no lighter moments; this book holds seeds of hope along with moments that bring relief to the reader who is already in the grip of a loved one’s dementia. Our story reveals the underlying goodness that resides in us all, even when plagued with dementia and end- of-life issues.
The Forgotten closes with a “Tool Box” of resources to assist individuals who are seeking help and support in their caretaking endeavors. My expectation is that this book will stimulate readers to think differently about how we die and how we should be allowed to die. Our story offers a way to mitigate the suffering of other individuals who might one day face dementia. Because Sally’s dementia arrived so unexpectedly and persisted for so many years, I am now a strong advocate for those who suffer and will suffer from dementia in the final years of their lives.
This book needs to get into the hands of those suffering from dementia and their caregivers, who may want to exercise the right-to-die option on behalf of their afflicted loved ones. Nobody knows who is going to end up with dementia. Sally represents all of us who want to die with dignity, to have a say in when and how we want to die. And who doesn’t want to die with dignity? This reality, accompanied by not knowing who will get dementia, encourages readers to set up their end-of-life plans before dementia arrives unexpectedly at their doorstep.
This book is the only book on the market that, in addition to targeting people with dementia and their caregivers, includes the millions more who might one day experience dementia. This book is meant for those who will need this information before it is too late for them to be able to make good use of it.
Both before and after my accomplished wife, Sally, a longtime believer in an individual’s right to die, was diagnosed with dementia, she told me firmly that “when I am no longer the person I once was, pull the plug.” But there was no plug to pull. As she made her way through the ever-worsening stages of dementia, she regularly cried out, begging: “Help me, help me! I’m dying. I want to die!” But legally, nothing could be done by me or by anyone else to bring about the kind of death she wanted.
This meant I had to watch her live out the final years of life plagued by dementia-induced agitation and anxiety, suffering from needless pain and discomfort, and experiencing the inevitable loss of dignity and autonomy she so feared. That does not have to happen. This book will give those with dementia, and their loved ones, a way to live and die peacefully and without pain.
For this to happen, we need “right-to-die” legislation. This book helps readers specify in an amendment to their Advanced Medical Directive, what I call a “Dementia: Right to Die Directive,” describing how and when they want to die. This approach, encouraged and explained in these pages, would permit a person’s Durable Power of Attorney for Health Care after determining the demented person was no longer the person she once was, to obtain a lethal medication and authorize a physician or perhaps a physician’s assistant to administer this medication without fear of legal action against them.
Finally, readers are given an unvarnished glimpse at what caregivers must contend with, even as they try to understand what motivates their loved ones to speak and act as they do. This does not mean there are no lighter moments; this book holds seeds of hope along with moments that bring relief to the reader who is already in the grip of a loved one’s dementia. Our story reveals the underlying goodness that resides in us all, even when plagued with dementia and end- of-life issues.
The Forgotten closes with a “Tool Box” of resources to assist individuals who are seeking help and support in their caretaking endeavors. My expectation is that this book will stimulate readers to think differently about how we die and how we should be allowed to die. Our story offers a way to mitigate the suffering of other individuals who might one day face dementia. Because Sally’s dementia arrived so unexpectedly and persisted for so many years, I am now a strong advocate for those who suffer and will suffer from dementia in the final years of their lives.