Living With Alzheimer’s: A Journey Observed

By Leigh Smyth, M.D.

“Alzheimer’s disease rewrites the terms of a marriage in this debut memoir… a touching personal account…” – Kirkus Reviews “... a concise and moving treatise that supports and informs caregivers of Alzheimer’s patients. This book is required reading for family caretakers, clinicians, and others who simply wonder how to approach such afflictions.” – D. Robert Aiello, Ph.D Writing from the vantage point of a spouse and mental health professional who has witnessed and cared for a loved one with Alzheimer’s over the course of ten years, the author- a clinical psychiatrist- reveals the personal side of signs and symptoms of the disease beyond memory loss that make up the full developmental syndrome of Alzheimer’s, including: distortion of memory erratic likes and dislikes oppositionality hoarding and miming behaviors irritability and mood instability personality changes loss of cognitive resilience judgment issues paranoia common psychological defenses against these progressive losses.

• Language: English
• Publisher: Lulu Publishing Services
• Release date: Oct 30, 2017
• ISBN: 9781483467672

Book preview

51

INTRODUCTION

As a psychiatrist, I’ve always appreciated the benefits of self-awareness, the need to openly acknowledge and voice one’s stresses, and the necessity of social supports to facilitate both. While it would be an overstatement to say that I lived in fear for the first few decades of my now forty-year marriage, I was certainly aware of what the risks of old age held for my spouse after seeing his mother’s decline into Alzheimer’s disease (AD). (It was recognized readily enough in her time as well, since her own mother had gone down that same path.) As I’ve been a clinician for thirty-plus years, it wasn’t hard to recognize the symptoms when they began to manifest in my spouse. This book began as a diary of my personal journey down that road—written initially to unburden my psyche as well as to facilitate my own memory in helping reconstruct that path for diagnostic purposes later. It is intended to help chart the path for others who haven’t had the advantages that I’ve had: I, at least, knew what was happening as it unfolded. Alzheimer’s is bad enough to live through, but it’s worse still if those living through it are handicapped by not knowing why their world is slowly being turned inside out.

When most people think of AD, they think of memory deficits. And while memory deficits are the most obvious symptom associated with the disease, the full spectrum of AD involves much more, including things that may be far from obvious to the casual observer. To those who live with an AD-afflicted person, non-memory deficits may be far more damaging to a caregiver’s attempts to maintain normalcy for as long as possible as the illness progresses.

The progression of AD is a long one—measured in years rather than months or weeks—and because the earliest symptoms are so subtle, their actual onset is often only appreciated in retrospect. Diagnosis may not be immediately possible at that time, even if the suspicion is well founded, as in the case of a known familial or genetic risk. This is because the symptoms are easily written off as things that anybody could and occasionally does do. But the distinction between AD and the typical idiosyncrasies of aging ultimately lies in a pattern of repeated errors, progressive lack of insight to those errors, and confused attempts at correcting them. For example, anybody can lose his or her car keys. But if it happens repeatedly, the person lacks the insight that tells him or her it is an issue, and the keys turn up in places that even absentmindedness is unlikely to explain (e.g., in the refrigerator) then the syndrome has started to take on the characteristics of an illness rather than a passing senior moment. It is then that the long progression from complete normalcy to the indifference and nonfunction that characterizes advanced AD can be considered to be under way.

AD is relentlessly degenerative in nature over its years-long course—that is, without the ebb and flow of other illnesses, which can sometimes go into remission. But there remains plenty of ebb and flow from day to day and month to month in its midcourse, including changes in insight and memory in addition to the more subtle non-memory symptoms. And if one has to undergo the experience of living with Alzheimer’s at all, it’s arguably a blessing that it should be that way—as both patient and caregiver are given that many more chances to take a breath, batten the emotional hatches, and make preparations for what’s to follow.

Psychiatry is a medical specialty; any psychiatrist is a medical doctor first and a psychiatric specialist secondly. While the ultimate testing for AD depends on neuropsychological testing (usually administered and interpreted by a psychologist with a PhD), it falls to the physician specialist to make the call as to whether or not the clinical syndrome constitutes the actual illness of AD. Particularly in the early stages, a clinical assessment of the person with a disorder of mood, thinking, or cognition may be even more sensitive than what neuropsychological testing might show. Family members or others living in close quarters with the patient may, similarly, be in a still better position to pick up on some of the earliest symptoms compared to a clinician who doesn’t know the patient well. I would like to think that my perspective as a spouse of forty years, in combination with my psychiatric expertise, gives me a rather unique vantage point toward this illness.

If the clinical professionals are slow to want to go there diagnostically—especially early in the course of the illness—there are several reasons to account for it. First, diagnosis may seem like little more than an academic exercise since there is truly little available in the way of treatment. Studies of currently available pharmaceuticals generally show only minor, population-based benefits—such as a delay of only some months before patients eventually need nursing home placement anyway—rather than any clinical improvements that patients or caregivers are likely to notice. Second, it is a time-consuming and expensive diagnosis to make. In this era of high scrutiny over our health care dollars, it runs against the tide to go through a raft of brain scans and laboratory testing to rule out possible but known-to-be-unlikely other medical reasons for cognitive decline in the aging or the aged. (But it also constitutes potential malpractice for the practitioner if the possibility of Alzheimer’s is brought up by the physician and then he or she fails to follow up with a full workup.) Both are disincentives for the average primary-care doctor to want to open that Pandora’s box. And neuropsychological testing, if done thoroughly and well, requires a conversant and familiar relationship between the family doctor and that neuropsychologist—something that many family doctors simply don’t have (and/or don’t have the time for). Even then, serial testing over time may be necessary to demonstrate the decline characteristic to AD, losing yet more people along the diagnostic way when long-term follow-up languishes because of the expense to the patient or the health care system, or because of apathy on the part of either.

Where medical treatment options end is where the reality of caregiving by loved ones kicks in. Caregivers are, after all, the ones on whom the patient becomes increasingly dependent over time, in ways both large and small. And just as new parents must adjust their approach to children, who are always growing in capacity and independence, caregivers of AD patients must find ways to travel the same road in reverse. It’s a grueling process and counter to what one would expect or consider fair after the lifetime of experiential growth that precedes it for most of us. But the first rule of survival for the caregiver is to come to terms with the fact that AD simply is in the philosophical sense—meaning that it’s not something one would wish for, expect to be happy about, or have any real control over. It is, however, a challenge that can be lived with, managed, and gotten through. (Are we ever really given any other choice?)

My hope is that this book will help those who are confronted with the same challenge. My clinical career—that is, helping others find creative ways to turn life’s lemons into lemonade—has certainly helped me through my own personal journey. And I’ve always believed in the truism that what doesn’t do us in really does make us stronger, more resilient, and, in the end, better people.

What follows is a record of my husband’s early symptoms as my family experienced them, a look through the clinical lens at those same symptoms in the context of the AD diagnosis, and a how-to approach to the management of it all—including some coping skills and strategies to avert the burnout to which caregivers are so susceptible.

Come with me on a journey that lasted more than ten years—longer, really, if you count my being witness to the decline of my mother-in-law, and the family knowledge of her mother’s decline before that. It is a compelling family history, rife with anticipatory fear over their later years that several generations in this family have now experienced. But appreciate also that this illness was embedded in the personal lives of each of its victims, who were surrounded in each case by loved ones who successfully saw them through the misperceptions, errors in judgment, and overall cognitive decline that may have robbed them of their dignity, but not their humanity.

It is a story of life.

PART 1

The Family

CHAPTER 1

EARLY SYMPTOMS AND COMMUNITY ISSUES

My husband, Frank, has Alzheimer’s disease (AD). How do I know? I’m a physician by profession and a psychiatrist by specialty, so I know what AD looks