driven, which leaves very little time for emotional care and relationship building. Continued focus on a person’s physical well-being can be both draining and stressful. As we move forward throughout this book, the acknowledgment of feelings of stress, guilt, and even anger is essential. So many caregivers have expressed these sentiments in whispered tones, as if they were wrong or something they should be ashamed of feeling. They are not. These thoughts are healthy and come from being put in a difficult situation. What matters is the way you choose to handle these thoughts.
Due to the sensitive and delicate nature of providing care, it is essential that both parties agree to the care arrangements. The care recipient should express either verbally or in writing what kinds of care measures they agree to, who they want to be providing this care, and an agreement with that person that they are willing and able to take on the role. The caregiver should identify what kinds of care they can provide and understand in what aspects of care they will require additional assistance. Unfortunately, this is hardly ever the case. As mentioned above, family members take on the role unassumingly, and too often without a conversation with the older adult in need. Society tells you to plan for retirement, but the conversation often stops there and neglects to prepare for, or even discuss, a time when you are no longer able to care for yourself.
Longevity is a relatively new concept in our society. Black men who were born in 1950 had a life expectancy of fifty-nine; white men were expected to live to sixty-seven. Today, this is retirement age. Meanwhile, white women who were born in 1950 had a life expectancy of seventy-five; black women were expected to live to sixty-three.1 Medical advancements and a better understanding and appreciation of nutrition and exercise have resulted in longer and healthier lives for both men and women. We never needed to make plans past retirement because no one expected even to live that long, so now, as we navigate the complexities of an aging population, planning becomes much more relevant and necessary.
To not have these conversations leaves family members to struggle to make the “right” decision for their loved one without knowing what they would want. For instance, AARP (American Association of Retired Persons) and the Centers for Disease Control report that 87 percent of adults over the age of sixty-five have expressed the desire to age in place (to live in one place through every stage of the aging process) 2,3. However, to make aging in place a sustainable option takes a lot of planning and a lot of money. This, coupled with the less than ideal reputation of nursing homes and other senior care facilities, creates added pressure in deciding whether your loved one should come and live with you. I’ve had many conversations over the years with people who say “that is just what you do”; however, living with a parent or having the parent come live with you is a significant decision, and there are a lot of factors that should be considered before living together. Not everyone has a good relationship with their parents, but that doesn’t mean you won’t have to care for them. Don’t make the situation worse for yourselves by creating little to no space to step away from the caregiving situation.
The right care setting is out there for all of us; it just takes time and consideration. No doubt, if you have taken on the role of caregiver—no matter your relationship with your loved one—you want the best for them. Sometimes that means you are the primary caregiver, and sometimes it does not. If your loved one hasn’t made a decision on how they would like their care handled, or if they assume you are the person for the job without discussing it with you, you have every right to decide for yourself if this is what you want to do. You are not a bad person for saying that the emotional and physical toll of caregiving is just a bit too much for you to take on.
There are a variety of ways you can provide care for your loved one. Getting to know them during this new phase of their life is so important, and, when left to focus primarily on the physical care, this special time together can become muddled with stressful moments. You deserve to look back on this time with joy and love.
Accessing education or resources to learn how to provide care can be difficult. It’s not that there is a lack of information on the topic; rather, because caregiving is such a personal experience, it is hard to know where to start. But it is important that you know you are not alone. There are both experts and other family caregivers out there, advocating and educating based on their own experience, and they are more than happy to share what they have learned along the way to help you.
The Caregiver Generation
The role of the caregiver can be found in almost every generation, and, over time, our understanding and recognition of the caregiver’s role has been extended beyond the family. Over the past three generations, there has been a dramatic shift in the expectations of who gives care and the extent of the caregiving demands assumed by those individuals providing care. I started work in senior living in 2005 on a skilled nursing unit, and while I didn’t know it at the time, the demographic cohort I was providing care to was part of what many refer to as the Silent Generation. Born between 1925 and 1945, the Silent Generation are known for their “waste not, want not” mentality that many suggest they learned from living through the Great Depression. They are a population of fifty-five million in the US, and for the past twenty years had made up the majority of retirees.4 They also gave birth to the Baby Boomers and, as they’ve gotten older, have been cared for by Boomers, who are an entirely different group of individuals.
The Baby Boomers were born between 1946 and 1964, and they are the largest generational cohort, making up 28 percent of the American population at seventy-six million people. Unlike their parents before them, the Boomers are known for their individualistic mindsets, are socially conscious, and make up the most substantial subset of the workforce. In 2011, the first wave of Boomers turned sixty-five, and it is projected that every day until 2030, ten thousand Baby Boomers will reach the age of retirement.5 Over the fifteen years I’ve worked in senior living, I’ve watched as the Boomers started to move into long-term care and witnessed the challenges the field has already begun to face as others attempt to care for such a large subset of the population.
For now, many Boomers still provide care to their parents of the Silent Generation, and they are doing so as they plan for their own future care needs. One of the biggest questions we ask in the field is, who will take care of the Boomers when they need it? So far, many in this demographic have been vocal about not wanting the same kinds of care their parents had, and they are working to change the “face” of old age by challenging stereotypes. But, as a whole, this group is still not planning for their long-term care needs, and, if we as a society are to provide care to such a large group of people effectively, it is important that this generation join the conversation and take responsibility for making a plan for their future care needs.
As the number of people in need of care grows, there is a significant decline in available caregivers, and reports of nursing homes being short-staffed continue to increase. Simultaneously, the number of family caregivers has increased, and the National Alliance on Caregiving and AARP report that there are 43.5 million unpaid caregivers in the US and that this number will continue to rise.6 At such high numbers, family caregivers, particularly those of the Baby Boomer generation, will be the most affected by the burden of care. To become involved as someone’s caregiver is a significant undertaking that involves a variety of factors, including your financial capability. Caregiving for an older adult is not a straightforward process, and there will be times when you have to handle vital decisions for the person in your care. To be put in this position without prior knowledge or understanding of the complexities of care is unfair and does not prepare you for the situations you will likely face along the way.
In this chapter, we take a closer look at the diversity of roles and settings that caregivers find themselves in, to shine light on the fact that caregivers take on many different roles, and, no matter what situation you find yourself in, you are never really alone in your journey. To recognize that people across our society are caregivers brings much-needed awareness of the support and flexibility we should be providing this growing subset of our population. As you move through this book, consider what kinds of care you feel comfortable with and able to provide your loved one.
Caregivers
