Read an Excerpt
Cruising through Caregiving
Reducing the Stress of Caring for Your Loved One
By Jennifer L. FitzPatrick Greenleaf Book Group Press
Copyright © 2016 Jennifer L. FitzPatrick
All rights reserved.
ISBN: 978-1-62634-319-1
CHAPTER 1
CAREGIVING 101
If you picked up this book, it's likely you are a caregiver, even if you don't already think of yourself as one. After all, most people don't read books like this for fun. And unfortunately, most people don't read books like this ahead of time. (If you are reading this book just to plan ahead for if or when you become a caregiver, that's great, and you will be better prepared when the time comes.) This chapter explores the role of a caregiver and helps you better understand the answers to the following questions:
• What do the terms caregiving and caregiver mean?
• What are the three different types of caregivers?
• What type of caregiver are you?
• Why is a caregiving team, or "crew," better than a solo caregiver?
• Why do we become caregivers?
• Why do some of us have a more natural aptitude for caregiving than others do?
What Exactly Is Caregiving?
Before we go any further, we need to define caregiving and clear up why there is sometimes confusion as to whether someone is a caregiver or not. I've talked with countless people, for example, who clearly fit the caregiver profile but don't identify themselves as such.
When many people hear the term caregiving, they frequently think of basic practical tasks like bathing or feeding an older loved one. But this term is very broad and encompasses so many different types of responsibilities. In addition to helping with activities of daily living (also known as ADLs) like bathing or eating, caregiving actually encompasses all kinds of duties. Here are some examples:
• Helping with instrumental activities of daily living (also known as IADLs), such as grocery shopping and paying bills or getting your older loved one to a doctor's appointment or church/synagogue
• Helping the older loved one with decision-making tasks
• Coordinating and supervising services brought into the home like home care aides, professional organizers, house cleaners, repair persons, and life alert programs
• Interviewing and hiring professional services such as money managers and elder law attorneys
• Arranging and participating in tours of nursing homes and/or assisted living communities and making decisions about them
• Managing finances, insurance, and benefits applications
• Paying out-of-pocket for necessities or luxuries for the older loved one that enhance quality of life (but that the older loved one can't afford or does not want to pay for)
• Providing social or emotional support opportunities for the older loved one
Many times people don't consider themselves a caregiver unless they live with their older loved one. While many caregivers do live in the same residence with the persons they are caring for, many more do not. Some caregivers live across the country from their older loved one, so geography is not the determining factor. It doesn't matter where you live; if you are helping out with one of the tasks mentioned previously, you likely can call yourself a caregiver. Further, if you are providing support to someone who is doing the tasks mentioned previously, you are also a caregiver, just a different type.
Life Jacket: Throughout the book you will see many references to assisted living communities, nursing homes, continuing care retirement communities (CCRC), adult day care, and home care. Here is a brief overview of these service options:
• Adult day care is a supervised place where older loved ones socialize and have meals (often with medical support) while their caregiving crews work (or just take a break).
• Assisted living offers residential services to people who are more independent than those who need nursing home care.
• CCRCs are generally communities you pay an entrance fee to move into, and they offer an independent living section, assisted living, and nursing home — the major benefit is typically that you are guaranteed care for the rest of your life at that location.
• Home care commonly offers help with ADLs and IADLs to keep older loved ones in the private home. Home care is frequently confused with home health care services. Home care is typically a long- or short-term private pay service provided by non-degreed professionals like home care aides.
• Home health care is typically a short-term service that is provided by degreed professionals like physical therapists and nurses. Medicare and other insurance often cover home health care while home care is almost exclusively private pay.
• Nursing homes typically provide short-term rehab (e.g., for a broken hip) and also offer long-term residential services for people who can't manage their activities of daily living (ADL) like bathing and dressing and instrumental activities of daily living (IADL) like grocery shopping and preparing meals.
What Type of Caregiver Are You?
So, if you aren't sure whether you are a caregiver or not, let's figure that out right now. It's highly likely that most readers will fall into one of three categories: primary, secondary, or tertiary. What caregiver role type best describes you?
Primary Caregiver
A primary caregiver is the main person coordinating, planning, and/or providing care for the senior. In other words, the primary caregiver is the person in charge, the organizer, who also often does the bulk of the caregiving tasks. Think of the primary caregiver as the captain of a ship.
As I mentioned previously, many people have the idea that if someone is the primary caregiver it means the elderly loved one has moved in with her or she has moved in with the older loved one. Primary caregiving can involve living with the older loved one, but living with someone does not necessarily mean you are a primary caregiver. A primary caregiver may be the key person handling things from some distance (from a single mile to thousands of miles).
There is almost always one individual who functions as the primary caregiver. Seldom are there multiple primary caregivers; it does happen, but very rarely. Perhaps two sisters live close to their father and truly split the duties equally. But even then, in almost all cases one does a little more and is the true primary caregiver. As boaters will tell you, there can only be one captain, and it is mostly the same in caregiving situations.
During the course of this chapter, I will use the Brady family to illustrate the different types of caregivers and their possible duties. Let's meet Susan, the primary caregiver.
At seventy-three years old, Susan Brady is the primary caregiver for her seventy-four-year-old husband, Bill Brady, who had a stroke. She hires the home care aides, coordinates his doctor's appointments, and manages all the bills. She also provides a great deal of hands-on care like helping Bill dress and shave.
It is not surprising that Susan, being the wife of a disabled older man with whom she lives, is the primary caregiver. Statistically and historically speaking, women are most often in the primary caregiving role. Daughters, daughters-inlaw, wives, nieces, granddaughters, female friends, and neighbors are primary caregivers far more often than their male counterparts are. But many male spouses, sons, and grandsons do take on this role as well. Often it is pretty obvious who in the family will take on the primary caregiving role when the need arises, but sometimes it's surprising to see who rises to the occasion to assume this important role.
While a primary caregiver like Susan often performs many of the direct personal care tasks like helping Bill bathe and dress, ideally she would delegate many of those responsibilities. To avoid the risk of making you seasick by using another boating reference, let's use a few different analogies in this chapter. Let's think of a primary caregiver as the general manager of a hotel. She is ultimately in charge of everything but arranges or delegates much of the work.
A hotel's general manager is typically capable of doing many of the functions that keep a hotel running successfully. But does the hotel manager typically make the coffee you are drinking at breakfast? Does the manager clean your room? Does the manager provide your wake-up call in the morning? Hopefully not. While a general manager may pitch in sometimes with these duties, the hotel is running best when these duties are assigned to others. Typically, the restaurant staff prepare the coffee. Most likely, the housekeeping staff clean your room. Often your wake-up call comes courtesy of an automated wake-up call system that the manager has arranged for hotel guests. An efficient hotel general manager focuses on the big picture, recruits the best people to oversee and work in the different hotel departments, and pitches in during overly busy or emergency situations.
Think about it for a minute. Would you have confidence staying at a hotel where the general manager was doing everything? Or would you feel better if there were lots of hands on deck pulling together as a team to make your stay at the hotel as comfortable as possible? Most of us prefer a competent team working at the hotel rather than relying solely on the general manager. Actually, if we saw a general manager cleaning our rooms, serving coffee, and personally providing the wake-up call, we would think something was very wrong.
The primary caregiver should consider herself the general manager of the older loved one's care. That's why she needs secondary and tertiary caregivers to back her up. Just as we would prefer a general manager not to be doing all the tasks at a hotel, senior healthcare experts recommend that no primary caregiver should try to be the one and only caregiver in an older loved one's life.
Secondary Caregiver
A secondary caregiver is a person invested in the older loved one's care but who is not able or willing to be on the front lines as often or as closely. If we consider the primary caregiver the captain of the ship, the secondary caregiver is the first mate. The secondary caregivers may perform some of the direct caregiving duties to help the older loved one, but additionally, they may do things to support the primary caregiver.
Let's use a different analogy — Hollywood films — to explain this a little further. If the primary caregiver is the lead actor in a movie, then a secondary caregiver is in a supporting role.
Films are seldom made featuring only one actor. Sure, we have the lead actor — often a famous leading man or leading lady like George Clooney or Meryl Streep. But supporting actors are necessary to help the lead actor move the storyline along. The film industry recognizes this and knows that a good supporting actor is invaluable.
Families must recognize that good secondary caregivers are invaluable. Ideally, multiple secondary caregivers will support the primary caregiver. Unfortunately, this does not always happen, especially in a new caregiving situation. But having a team of support by way of secondary caregivers should be the goal of the primary caregiver.
Back to the Brady family. Susan and Bill's daughter Kara comes over one afternoon a week to help Bill eat lunch. Susan goes to her book club at this time. Kara is not only providing direct care to her father, but she is also supporting her mother. Kara is a secondary caregiver.
The Bradys' other daughter Kim does the grocery shopping each week for her parents. This benefits both Susan and Bill. Kim is also a secondary caregiver.
Believe it or not, teens and children can be fantastic secondary caregivers. Families often dismiss the idea that young people can be of much help in caregiving situations. But the Brady family has embraced the concept fully. Bill and Susan's six-year-old grandson, John, loves football. So does Bill. So every Sunday during football season, John comes over and watches the game with Bill. This visit enhances Bill's quality of life because he loves spending time with John and also gives Susan a much-needed break.
While good secondary caregivers are invaluable, it's important for them to resist stepping out of their supporting roles. Secondary caregivers have to be very careful about stepping on the toes of the primary caregiver. They should be respectful and defer to the primary unless there is true imminent danger to either the older loved one or the primary caregiver. For example, if a secondary caregiver sees that the older loved one is not getting her medications, it may be appropriate to step in. But if the secondary caregiver merely notices that the older loved one is not getting her dinner at exactly 6:00 p.m. every evening, it is probably wise to back off. To use a film analogy, the supporting actor should not steal the show from the lead.
Tertiary Caregiver
Tertiary caregivers provide support to and take stress off the primary caregiver. A tertiary caregiver is similar to the dockhand at the marina. Any captain will tell you that docking can be stressful, even under decent weather conditions. And, even with the help of your first mate, docking can go awry because of unpredictable winds, mechanical malfunctions, or the angle at which the vessel next to your slip is tied up. When there is a dockhand at the marina, it is much easier to dock the boat.
Typically the tertiary caregiver does not have much direct contact or impact on the older loved one. But the tertiary caregiver can have a significant impact on the primary and/or secondary caregivers. Let's take a look at how tertiary caregivers are making the caregiving process less stressful for the Brady family.
Susan has three tertiary caregivers providing support to her. Bill's sister Janet lives in a different state. Once or twice each year, she sends a gift card to a local spa for Susan to get a massage or have her nails done, which makes for a nice respite for Susan.
The Bradys' longtime friend and neighbor Graham mows the lawn during the summer. This takes a huge burden off of Susan. Her sister Laura, a kindergarten teacher, makes an effort to check in via phone once a week to see how she's feeling. Her call provides Susan an opportunity to vent if she is feeling overwhelmed and frustrated, or just provides a welcome distraction when Laura has funny stories to tell about her students.
Your relationship with your older loved one need not necessarily dictate if you are primary, secondary, or tertiary. Every caregiving situation and every relationship is unique. What's more important is that you are comfortable in your role. If you are not, you should consider whether a role switch is possible. When caregivers are truly comfortable in their respective roles, they tend to suffer less stress.
Why Are You a Caregiver?
People's stories vary about how they began caring for a friend or family member who is elderly, sick, or disabled. Maybe you got a phone call in the middle of the night that your mother-in-law broke her hip. Perhaps your husband was just diagnosed with Parkinson's disease. Or you've witnessed over the past decade the slow and steady decline as your favorite childless uncle became increasingly less independent. Many people become caregivers by default; caregiving sneaks up on them when an older loved one begins declining or has a health crisis. Because of this, most people caring for older parents, spouses, and family members don't research or read ahead of time about best practices in caregiving. Most caregivers wait until they are thrust into caregiving before seeking help.
Nobody looks forward to being a caregiver. We all want and hope our older spouses, parents, and other family members will remain independent and healthy. And many people do live to old age completely and totally independently, never needing any type of caregiving assistance. But more commonly, older adults need at least some type of help. It may be a little bit of assistance or complete care; it may be long term or just for a brief period. So why do people become caregivers? The answers can be surprisingly complex. Many people feel like they have no choice, but they do — after all, there are very few things in life that we truly don't have a choice about. I discuss this idea further in chapter 13.
Many caregivers cite love as their reason for becoming a caregiver. They love their spouse, parent, grandparent, or dear friend. Others become caregivers out of obligation or a sense of honor or duty. They are caregivers, because they would feel bad if they weren't or they think it would be morally or religiously wrong for them to not be involved in their older loved one's care.
Some caregivers say they want to give back. When Amy was twelve, her mother died. That's when Sarah, Amy's godmother, stepped in to fill the space and provide support for Amy. Now that Sarah needs assistance, Amy wants to repay Sarah for all the ways she's been there for her.
Other caregivers explain, "There's nobody else." They had to step up and manage their older loved one's care because nobody else would or nobody else was local. Or maybe there really is nobody else. While this can happen, it is actually extremely rare — even the most eccentric and prickly among us usually have some friends and family.
(Continues...)
Excerpted from Cruising through Caregiving by Jennifer L. FitzPatrick. Copyright © 2016 Jennifer L. FitzPatrick. Excerpted by permission of Greenleaf Book Group Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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