Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years of experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York, and, after relocating to California, spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her extensive personal knowledge and expertise to enlighten our readers regarding the challenges associated with chronic illness and their profound effects on family relationships and human dynamics.
“Do not go gentle into that good night,
Old age should burn and rage at close of day;
Rage, rage against the dying of the light…”
When most of us think about terminal illness — if we think of it at all — we imagine the slow deterioration of our physical bodies or that of someone we love. We conjure up images of a difficult and painful struggle to maintain our independence and mobility as we work to overcome the effects of a failing heart, the ravages of cancer, or lungs damaged by pulmonary disease. We may even imagine losing some of our physical capabilities, such as our sight or hearing or the use of our limbs.
But few of us ever think about an illness that can leave our bodies relatively unscathed while it wreaks havoc with what is arguably our most important faculty — our minds. Yet, that is the precise reality of Alzheimer’s disease, a devastating form of dementia that now affects one in nine Americans over the age of 65.
What is it like to live with a disease that robs you of your cognitive functions: your ability to engage in day-to-day activities, to express yourself appropriately, to remember where you live or the faces of the people you love? What is it like to know that you are not the person you were, that you can no longer trust yourself to go to the grocery store or take your dog for a walk?
“Imagine if someone said to you: ‘Give me your car keys, your money, simply everything’…Everyone treats me like a kid. Sooner or later I guess I’ll become my wife’s son. I’m incredibly scared of that.”
Richard — diagnosed with early-onset Alzheimer’s at the age of 58
Perhaps the saddest truth about Alzheimer’s is that as the disease progresses, those affected can’t tell us how they feel. We learn about the person they used to be from caregivers, who share with us how different they are now — how much they have changed. We see the terrible sadness of the family as the person they love slips further and further into a world of silence and isolation and (we suspect but cannot know) loneliness and fear.
“The biggest question — the one that haunts me every day — is: ‘Is she still there? Is she suffering? Is she afraid? Does she feel anything at all, or has all the emotion gone?’ There’s simply no way to know.”
Marnie — whose mother has lived with Alzheimer’s disease for 10 years.
And it is that loss of emotional connection that Alzheimer’s sufferers and their families fear most. As Richard says,
“One day I will no longer know how to express love. Bit by bit, everything that connects us will disappear, and I suspect that I won’t even miss it. But my wife will.”
Alzheimer’s is the only disease among the top 10 causes of death in America that cannot be prevented, cured or even slowed.
As of 2016, Alzheimer’s is the only disease among the top 10 causes of death in America that cannot be prevented, cured or even slowed. There are treatments — medicines that seem to help improve the functioning of damaged brain cells — but they are not effective for everyone, and they do not stop the progression of the disease.
Yet the lack of effective treatment doesn’t mean there is nothing to be done. Alzheimer’s is a progressive disease, and scientists across the globe are working on developing new ways to detect it early, before it significantly affects cognition or memory. And early diagnosis may lead to more effective treatments down the road.
Even more importantly, an early diagnosis gives Alzheimer’s patients and their families a wonderful gift — the gift of time. No one can predict how the disease will progress, and in the time between the diagnosis and the onset of dementia, there is time and space to grieve and to heal — to share memories and make memories, and to create a legacy that will live on long after memory itself is gone.
“Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night…”
~ Dylan Thomas