The Complete Guide for Family Caregivers

By Caroline Tapp-McDougall

Practical Solutions and Information to Help You Make the Best Eldercare Decisions
Providing eldercare while working and managing a busy home life is a recipe for burnout and is the worst situation in which to make thoughtful, informed decisions that have significant impact on the quality of life of an aging parent. The Complete Guide for Family Caregivers, written by one of Canada’s foremost experts on eldercare, provides the advice people need to make smart decisions, both with and for their loved ones, including housing, finances, medical needs, independence, mobility, legal and estate planning. This book provides not only practical advice but also discusses the various situations that may confront you and provides real, actionable information and sources to help you along the way in your eldercare journey.

• Language: English
• Publisher: Next Chapter Press
• Release date: Nov 4, 2020
• ISBN: 9781989517338

Caroline Tapp-McDougall

Caroline Tapp-McDougall is the publisher of Caregiver Solutions magazine, a Canadian publication dedicated to the wellness of seniors, their caregivers, and their families. The author has a background in health-care communications and extensive editorial experience in the areas of health, wellness, and disability as the managing editor of a number of Canadian magazines in print and online. She is also a respected speaker at conferences and events and is on the board of directors of the Canadian Abilities Foundation.

Book preview

An illustrated hand holds up a red heart against a dark blue background. In yellow and white sans-serif in the top half of the page reads 'The Complete Guide for Family Caregivers.' And underneath in a band across the middle is 'Caroline Tapp-McDougall.'

The Complete Guide for

Family

Caregivers

Caroline Tapp-McDougall

A black and white logo with a deciduous tree framed by a large crescent moon. To the right of the moon and tree are the words 'Next Chapter Press.'

The Complete Guide for Family Caregivers

Editor: Allister Thompson

Book Designer: Jamie Arts

Published in Stratford, Canada, by Blue Moon Publishers.

ISBN: 978-1-989517-33-8

The Complete Guide for Family Caregivers. Copyright © Caroline Tapp-McDougall. All rights reserved. No part of this book may be reproduced or transmitted by any person or entity, in any form or by any means, electronic or mechanical, including photocopy, scanning, recording, or by any storage and retrieval system now known or to be invented without written permission from the publisher. Contact: Blue Moon Publishers, www.bluemoonpublishers.com. The format, design, and layout used in this book are trademarks and/or trade dress of Blue Moon Publishers.

The views and opinions expressed in this book are those of the author, based on her personal experiences in life and business, and the book is intended to provide inspiration and valuable general guidance, however, readers must consider their own circumstances before accepting the opinions of the author and applying them in their own circumstances. The author makes no representation as to the suitability or validity of the content of this book to the personal circumstances of the individuals who will read the book and will not be liable for any errors, omissions, loss, damage or claims arising from the contents of this book. Where inspirational quotations have been used, the author has used all reasonable endeavours to ensure that the materials are not in breach of copyright and intellectual property laws.

Next Chapter books are available at special quantity discounts to corporations, professional associations, and other organizations. For details and discount information, please contact [e-mail].

Contents

Foreword

Author’s Note: The Joy of Caregiving

Chapter 1: Accepting the Hard Truths of Caregiving

Chapter 2: Plan Ahead — Not on the Fly!

Chapter 3: Let’s Talk About Housing

Chapter 4: Accessibility and Inclusion Matter

Chapter 5: Hiring Help at Home

Chapter 6:

Long-Distance Caregiving

Chapter 7: Crisis Management

Chapter 8: Caregiving in the Workplace

Chapter 9: Daily Living Redefined

Chapter 10: Mobility Matters

Chapter 11: Your Healthcare Team

Chapter 12: Money Matters

Chapter 13: Legally Speaking: Legal and Estate Planning for Elders

Chapter 14: Holidays, Family Style

Chapter 15 : Taking Care of Yourself

Chapter 16: End-of-Life Care

About the Author

Next Chapter Press

Foreword

Caregiving can be a daunting, challenging, and complex process that requires navigating many diverse systems, sometimes simultaneously, constantly asking questions and seeking information every step of the way. Whether that involves healthcare, financial, legal, housing, communication, safety, accessibility, hiring help, or care management issues, among others, people need guidance, access to resources, and support.

Caroline Tapp-McDougall has written a timely, comprehensive, easy to understand, and invaluable guide to help caregivers in all circumstances or at any stage of caregiving with important information, suggestions, and prevention tips that will make needed tasks much more manageable. Drawing on her wealth of personal and professional experience with caregiving, she lends her wisdom and knowledge to every aspect of preparation for what lies ahead in this difficult journey. She does so by emphasizing that caregiving is not for the faint of heart, painting an unvarnished and realistic picture while at the same time offering hope and encouragement, showing how it can also be a rewarding, life-changing event and an opportunity for personal growth. She points out how caregivers must also look after themselves to be most effective and shows us how to do this.

As our population ages, the incidence of dementia such as Alzheimer’s, chronic illnesses, and lifestyle ailments are destined to soar. If you are not a caregiver now, chances are you will be at some point in the future. Having Caroline Tapp-McDougall’s exceptional book at your fingertips will be a key resource that is a necessity on your journey.

Dr. Dan Andreae

Past Chair of the Canadian Abilities Foundation

Former Chair of the Patrons Council of the Alzheimer Society of Toronto

Author’s Note:

The Joy of Caregiving

WARNING: FAINT OF HEART, READ NO FURTHER

Regardless of one’s reason for becoming a caregiver, the responsibility entails a significant commitment that can be intense and time-consuming. Meeting care demands often necessitates life adjustments and may affect the time a caregiver can spend with family and friends, paid employment, and household responsibilities.

Within hours of my mother’s stroke, I became the older daughter, making decisions, evaluating rehabilitation choices, and rushing between hospital and long-term care facilities, despite my hopeless inexperience. As I look back, that was the simple part. Daily life après stroke was the challenge. Like it or not, over the next few months, my mother’s quality of life and medical care became primarily my responsibility. Mum’s life changed, and so, unfortunately, had mine and my family’s.

The Family Stretch

Caring was not something I could opt out of. It wasn’t a matter of choice. Through it all, my family had to compromise, stretch, and flex. Things at home had to become more agile than ever before. Mum’s needs and daily triumphs were often not at all what we’d imagined, and the financial impact and time away from work were significant.

Our next eleven years consisted of stroke rehab treatments and equipment issues, crisis planning, and the final eye-opening realization that Mum would never speak, walk, or use her entire right side again. Her house and car became expensive albatrosses, the hospital and Tim Hortons our second home. Adult diapers, nursing routines, the comfort of wheelchair seating cushions, and pressure relief became dinner table talk. Selecting a nursing home and dealing with administration, care issues, and Mum’s ongoing struggles became part of my everyday life.

Live and Learn

That day, I became a veteran coper. It was always a squeeze of time and effort. I made the two-hour return trip to Mum’s hometown more times than I’m willing to keep track of — rain, snow, or shine. Summer evenings on the nursing home lawn and awkward trips to the toilet became routine. I even learned to manage the drill from afar, not worrying about my lost income and extra expenses. I could even chuckle a bit at a few of the funny incidents along the way and let go of the turmoil of daily care. I gradually lost the guilt of not being there.

When I was there, Mum and I had a special routine. We laughed. We tried to communicate without words. We sang. I visited as often as I could and called her whenever possible (usually at dinner time!). We’d go out when I felt strong enough to push and lift. This wasn’t the life either of us planned, but that’s how it was, and we made it work.

We’re in This Together

Now that Mum is gone, the lessons I’ve learned along the way give me strength to help others and share advice. We, family caregivers like us, are a unique and growing bunch. Sometimes it feels like at certain times in our lives we belong to a special club, where the membership criterion is an aging parent. We glance knowingly at each other beside walkers and wheelchairs like we used to behind strollers. We share stories, hats, mitts, and coats, we worry about a parent who is at risk, and we encourage one another.

I dedicate this book to caregivers everywhere with these few tips. Make your health a priority so you can stay the course. Be strong enough to plan and research well. Shed the adult-child attitude, be ready to take advice, and ask for help and say no when it’s too much. Forget the sense of obligation and lose the guilt. This is a labour of love, to be undertaken only by those who are agile enough to follow an unknown path.

Find pleasure and joy in small things while you can. Look for energy in an occasional smile and signs of gratitude. Keep your chin up and take pride in preparing for and doing the best damn job you can.

—Caroline

Chapter 1

Accepting the Hard Truths of Caregiving

The realization that our parents are getting older and experiencing deteriorating health is often a rude awakening. As kids, we thought they would live forever, and as adults we’re used to Mom and Dad/Grandma and Grandpa being such an active part of our lives. Now the roles are reversing, and suddenly we’re becoming concerned.

As Mom, Dad, or other relatives grow older, our relationship to them begins to change. Those we have depended on for so many years may now start to rely on us physically, and perhaps emotionally, too. For many of us, this will be an awkward feeling. As we become spokespeople for their needs and requests, we often need to learn new skills and develop the patience of Job. We will see personality traits that we once admired undermining our efforts. The rules start to change. The line between decisively moving forward with things and gingerly watching and waiting becomes more and more blurred. How will you cope?

Be Alert to The Signs

Here’s an important piece of advice: watch for signs that your parents need more care than they are willing to admit. A new or worsening condition is an obvious indication, but other clues can often be more subtle. For example, a house slowly falling into disrepair may indicate that your parents are less mobile and not physically up to looking after the house. Or they may be suffering a decline in their mental abilities or their vision and just don’t have the energy or ability to do things themselves. Food spoiling in the fridge may mean that they are not eating proper meals. Lack of attention to personal care is also high on the list.

A particular sign that outside help may be needed is if one parent who provides care for the other (e.g., your mother acting as informal caregiver for your father) begins to complain or show signs of physical or mental exhaustion. You may hear this from the doctor or family friends rather than from your mother or father. Why? Many parents try to tough it out on their own for fear of being separated or making things worse for themselves. To admit defeat or weakness will perhaps make them afraid that you might step in and make sudden changes they won’t be comfortable with.

Talk Honestly

Getting to the truth is often hard, but experts tell us that despite the fact that parents often want privacy or think they can shield their kids from worrying about them, families need to speak openly. It’s key to encourage your elders to be clear and honest about their needs. If they want help with finances or errands or doctors’ visits, they should say so. Stating needs openly helps ease your anxiety about how you can help, limits bad feelings and confusion, and assists in managing their expectations of you. Set your limitations and be clear. Are you the primary caregiver, or can others be called upon to help? Caregiving can be a collaboration that sees both parties achieving their goals in a win/win situation without resulting in hard feelings and burnout.

Admit It, Embrace It

The next step is to get familiar identifying with the term caregiver. It’s a term that is becoming increasingly visible in the media and among medical professionals, but it’s one that we’re not used to using when it comes to ourselves. Children of an older adult, or elderly spouses, when caring for one another, think of themselves as fulfilling their family responsibilities and not necessarily as caregivers. To call an aspect of their relationship a job or give it a label may for many, especially older spouses, be seen as a sign of disrespect, asking for help, a signal of helplessness, inadequacy, or failure.

If you are caring for an elder, how do you describe what you do? One recent definition that I came across sums it up well: A caregiver is a person who informally cares for and supports a family member, friend, neighbour, or individual who is frail, ill, or disabled, and who lives at home or in a care facility. Is this you?

Look Beyond Your Immediate Family

These days the hot topic at church functions, water cooler breaks, and fundraising soirees seems to be caregiving. Just like a few years ago, when childcare and nannies, Montessori and French immersion were the talk of the town, today it’s what’s up with our aging relatives. Try this test next time you’re with a group of five or more people: ask who knows someone who’s having challenges finding or providing care for a loved one. Odds are you’ll hear a story, and if you’re lucky, learn something. To pick up the most helpful advice on the fly:

Watch and learn from other families in the same life phase. Look around at how your friends are managing with elderly parents or relatives. Note resources they use and strategies that seem to work.

Ask friends about the role they play in their parents’ lives and how they cope with concerns and sources of stress.

Be frank about what kind of issues you may be concerned with. There’s nothing to be embarrassed about here.

Your parents’ family doctor should be a resource. Talk to other health providers, such as social workers or therapists attached to the local hospital, or professionals at community health centres. Independent home-care organizations — both not-for-profit and private — can also provide advice, and, often, hands-on help.

Are They Managing? And Are You?

Over time, case managers suggest that elders who have an I can cope on my own attitude will actually have drawbacks:

Available services to which they are entitled will be overlooked.

There is a much greater risk of accidents/falls in the home if they are alone.

Regular appointments become hard to keep and may be forgotten.

Things that require attention around the home may be left unattended.

Personal hygiene such as bathing, laundry, and oral health may be compromised.

Abuse/dominance by the surviving spouse may come into play.

Medical management/detection of illness or new frailties may be left unchecked.

Depression or exhaustion could go untreated.

Don’t forget that you are important too. No doubt you are channelling much of your time and energy into providing the best possible care, support, and advice for your elders, but keep in mind that your health is a priority. If you become ill, who will provide the care, guidance, and assistance for the others? Caregiving can be exhausting, so be sure to focus on ways to stay healthy, both physically and emotionally. Proper nutrition, exercise, and adequate sleep are vital to your well-being, as is the help and support provided by family, friends, self-help groups, and community services. (Read chapter 14 for more wise advice on self-care.)

You’re Not Alone

As an honest-to-goodness member of the sandwich generation, you’re not the only care provider. Juggling work, school, and the needs of your children and those of your parents is more than enough for one person. You’re likely finding very little time for yourself, and chances are your sleep, dietary needs, exercise routine, and personal time have not been a priority over the last little while.

It can happen to anyone, but now it’s time to put the kibosh on burnout with just a few adjustments and find ways to help you rebuild your energy, rebalance, and get the help you need to cope with everyday life.

Eldercare and its inherent superhero responsibilities are the new facts of life for aging Canadians and the invincible baby boomers, many of whom are now separated, divorced, remarried, blended, etc. Today, as adult sons and daughters with high-maintenance careers, as spouses with ailing partners or relatives, we are, as the saying goes, sandwiched between the care needs of others, our still-dependent children, and our jobs.

Research shows that families are, for the most part, unprepared for the eldercare challenges that lay ahead. Many move directly into care in crisis mode, make plans on the fly, and regret not making decisions around aging issues in advance.

Workplace health, wellness, and productivity issues are huge. Today, employers and governments identify productivity, absenteeism, presenteeism, and retention as key factors, with the statistics pointing to eldercare as one of the biggest productivity hurdles to overcome.

Just the facts about Canadian caregivers. Most of them are:

aged 40 to 64.

caring for an immediate family member.

working full-time.

balancing other activities (e.g., raising a family).

8.1 million Canadians are caregivers (1 in 4) .

54% are women, 46% are men.

Other notes worth reviewing:

6.1 million are juggling work and caregiving.

They spend 12.6 million dollars a year on expenses related to caregiving.

1.1 million Canadians are affected directly or indirectly by dementia.

Caregivers contribute 25 billion dollars in unpaid labour to our health system.

Source: StatsCan

Making Tough Decisions

Are you at work or at home? Whether it’s roll up your sleeves daily care or long-distance, hands-off management, each family’s caring situation is as diverse as the individuals involved. Where the commonality lies is that for most of us daily life with our parents gets hard to manage. Tough choices must be made, finances must be brought out of the closet, and guilt and emotions hit an all-time high.

Wimps beware … this is no time to bury your head. Mother doesn’t always know best — especially now! To dig yourself out, you need to take charge, listen up, and get the help that’s worth its weight in gold to look before you leap. This book contains simple, best-practice gems from health professionals and family caregivers in the know. You’ll be able to revive yourself with tips to preserve work-life balance and find some really time-sensitive alternatives that’ll put you back in the driver’s seat. At your fingertips is useful information that will make life less stressful, and, if you’re lucky, more rewarding. We’ll even teach you how to cope with your hard to handle brother, forgetful father, or critical sister-in-law along the way.

Heads up! If you read nothing else, check out these caregiving sanity savers that are sure to help you through the week. They’re even worth posting on the fridge for daily reminders, and be sure to visit caregiversolutions.ca

for more helpful tips and advice from my magazine writers.

Ten Eldercare Survival Tips

To improve your caregiving stamina, it’ll take more than a little work on your abs. Being fit to care requires a healthy mind and body and a good old-fashioned dose of a can-do attitude. Make it easier on yourself. Think positive and make things happen ... at your pace. Be upfront, be creative, and have reasonable expectations for yourself to gain control of your caregiving experience. Stay fresh, eat well, and get physically active.

By building your physical and emotional strength, you’ll be strong and clearheaded enough to battle negative thoughts and take charge of potentially overwhelming caregiving situations:

1. Play the hand you’re dealt.

The circumstances you find yourself in may not be exactly what you hoped for. Accept the fact that your parent needs you and decide whether you intend to be there for them. Don’t carry around the emotional baggage with thoughts like, I wish it wasn’t like this! or How did I get stuck in this? Come to terms with your situation, be clear regarding your objectives, and set out to make the best of it.

2. Think positive.

Never underestimate the power of a positive outlook. From it will come the determination and strength to triumph over daily challenges. If you weren’t born with it, taking this rosy view of life takes practice. Listen to catch your negative comments. Even in an awful situation, try to take a glass half full rather than a glass half empty approach, especially with those around you. Things won’t seem so desperate, and your community, family, and friends will rally to give you the help you need when you look on the brighter side. A positive attitude pays dividends — everywhere.

3. Make things happen.

Despite what you may sometimes think, you are not totally at the mercy of your circumstances. Refuse to let your present situation control you or wreak havoc with the rest of your life. You can initiate changes for the better. You can make things happen to take the pressure off. Seek solutions, logically and calmly.

4. Set goals.

Be realistic and clear about what needs to be done and what you can manage. Setting goals in conjunction with your parents and health professionals is a great way to start. Goal-setting facilitates clear communication and helps prioritize limited time and resources.

5. Prioritize.

You can’t be all things to all people. Work and life must be kept in balance. Decide what’s important to you and how much time you’re prepared to spend on each area of your life/activity (in both the short and long term). Keep in mind that the more time you spend with Mum, the less time you’ll have to spend with kids, or don’t be surprised if you don’t get that promotion at work (tradeoffs). If you’ve thought it through and you have made those choices, you won’t be surprised/disappointed with the outcomes. Recognize and choose whether your role is to achieve short-term stability in your parents’ lives or to accept a new longer-term and more significant caregiving role.

6. Ask for help.

It’s a team effort — so be sure to ask for assistance then recognize and respect other members of your home-care/caregiving team. Don’t try to do it all yourself. Conversely, keep your eye on other family members/caregivers (spouse, brother, sister) who might be burning out themselves. Sharing care responsibilities reduces the load on each caregiver and makes it easier. Even if it’s just sharing the visiting times at the nursing home, be creative and involve others whenever possible.

7. Overcome your fear.

Sudden or sustained responsibilities can be draining. New demands often require ramping up with new skills. There’ll be lots of questions and not so many clear answers. While it’s only natural to feel trepidation, try not to get overwhelmed. It’s like having a new baby. Some things