CAREGIVER’S GUIDE FOR CANADIANS
Rick Lauber
Self-Counsel Press
(a division of)
International Self-Counsel Press Ltd.
USA Canada
Copyright © 2014
International Self-Counsel Press
All rights reserved.
Preface
My decision to write this book was prompted by a situation that is not going away — caregiving. Canada’s population is rapidly aging, which means sons and daughters are scrambling to find and provide suitable care for their own parents. Unless these family members have been fortunate enough to work in the health-care field, they often lack the necessary skills, attitudes, and experience to adequately help.
There is a huge sense of responsibility, obligation, and even guilt for these adult children who may silently believe, “Mom and Dad cared for me; now it’s my turn.” In turning the tables, adult children do what they can but must frequently learn “on the job” while giving their parents the best possible quality of life. Commonly, family members serving as caregivers suffer from a sense of imbalance, stress, and myriad emotions that include anger, depression, confusion, and grief. This is certainly not the best for either the caregivers or the parents.
Whether you are becoming a caregiver, anticipate eventually taking on the role, or know of someone else providing parental care, you are likely entering into foreign territory. There is no road map or tour guide to steer you. As a caregiver, you will be called on to make difficult lifestyle, health-care, and financial decisions affecting your own parents. You will struggle and deliberate as to whether you made the right choice. Learn to accept your own decisions, your own shortcomings (you cannot do it all for your parent), and the crucial importance of personal respite (i.e., taking a personal break).
Trust me, this is not easy! I’ve walked in your shoes, serving as a caregiver not once, but twice — for both of my aging parents. My Mom had leukemia and my Dad had Alzheimer’s disease. Through my experiences, I have gained a newfound respect for all of those working in care — specifically, for untrained family members (like me) who, often, have been thrust unknowingly into a caregiving role. I have also gained more respect for myself and know far better my own limits and strengths — as well as when it is necessary to take a break.
As you look ahead with uncertainty or trepidation, know that this is not a typical self-help book which simply aims to encourage or inspire you. The issues I speak of in this book are very real, and the tools and strategies I suggest can be very effective. I will share stories with you as to what caregiving mechanisms were helpful for me, and I will also discuss what was not helpful.
For the sake of conciseness, I have chosen to remember my Dad for the most part throughout. While my Mom’s medical case certainly presented numerous challenges, my Dad simply outlived her and my caregiving responsibilities were extended. Not all of this may be exactly relevant to your own situation, but please glean what you can from it. It is my hope that when you have finished reading this book, you will have learned at least one new thing about what to expect or how to cope as a caregiver.
There are stories of confusion, worry, and neglect that surround the role of caregiving. These stories sadden me, but I would say too that caregiving is not all doom and gloom. While your parent’s situation may seem bleak to you, there is joy to be found here — as you will see in the following pages.
1
Sharing My Story
“We do not remember days; we remember moments.”
Cesare Pavese
Most stories begin at the beginning, but for this story, it is more appropriate to begin at the end. It was June 20, 2004, and the last day I saw my father alive. This was a Sunday and one of my usual days to visit Dad who, at that time, had advanced Alzheimer’s Disease (AD) and was living in a secured long-term care facility.
A “secured” facility is necessary for those with AD because they are prone to wandering away and getting lost easily. These facilities are not like jail cells; sunlight can stream in through large windows, budgies can chirp from a cage in a corner, and residents remain free to roam throughout the available space and are encouraged to do so. Elevators, however, can be security coded and exit doors can be camouflaged with painted wall murals. While you or I would be able to tap in a few digits or find the colourfully painted doorknob to easily exit the building, such restrictions can be enough to confuse an individual with AD.
The condition attacks the human brain and steals precious memories — careers, friends, and even family members are forgotten. In the early stages of Alzheimer’s disease, a person can become increasingly absent-minded. Keys are misplaced more often, questions are repeatedly asked, and shopping lists become more relied on. During the middle and late stages of AD, a person can also forget the current day of the week, important news headlines from the past, and even his or her own birthday. My father, in the early stages of his disease, once overlooked my mother’s birthday. Although I reminded him in time, he was quite distraught when he realized he’d forgotten.
Individuals with AD will also decline physically; too weak to stand, those stricken will often end up in wheelchairs. AD also affects a person’s behaviours and speaking abilities. In my father’s situation, he could eventually only mumble incoherently, if he spoke at all.
The aforementioned wandering also occurs in the mid-to-late stages of Alzheimer’s disease. This could be due to individual restlessness, a desire to exercise, or a misunderstanding of the facts (e.g., a person with AD may believe that he or she can visit a long-time friend, when that friend has been dead for many years). Wandering, as an action, is harmless enough; however, when one lacks direction or cognitive abilities, it can become very dangerous. More than ever, local police detachments are frequently called by frenzied family members asking for help in finding a lost parent. More recently, Good Samaritans have begun stepping forward to help with locating missing relatives. It is alarming to think that a senior, wearing nothing but a nightgown, may escape from secured premises to be gone for days and at the mercy of weather conditions and other outdoor factors.
A further disturbing symptom associated with AD is “sundowning.” This occurs between the mid-to-late stages of AD. The confused senior cannot distinguish between daytime and nighttime. This can cause havoc with his or her sleeping patterns. Should this senior be living with a spouse or family caregiver, there will be unpleasant spin-off effects: For instance, a wandering senior may keep others awake.
While many perceive AD and dementia as identical, Alzheimer’s disease is, in fact, just one type of dementia. Other examples of dementia include vascular dementia and Pick’s disease. Strokes can also cause dementia due to cognitive damage to the brain.
My ritual each Sunday included arriving at the
