Caregiving offers rewards that you don’t necessarily expect amid the struggle of providing daily service to your loved one. The rewards may pop up in a single moment, or they may become perceptible only after the long, arduous slog of care is over and your loved one is no longer with you. Often the hardest things to do are also the most rewarding things to do, and caregiving reflects this reality.

Unfortunately, so much of our research has focused on the hard realities of caregiving, like burden and stress, that social science has yet to develop a comprehensive and robust view of positive outcomes associated with being a family caregiver. This is why I was so gratified to receive the following comment from Clare Stacey, a sociologist at Kent State University, in her endorsement of When Caregiving Calls. “[The book] considers aspects often overlooked,” she wrote, “such as the rewards that come from caring.” Stacey proceeded to describe When Caregiving Calls as “essential reading for those providing care, as well as for policy makers and social scientists.”

How can policy makers and social scientists learn about the rewards of caregiving? It’s easy: just ask the caregivers. Here is what three family caregivers told me about the positive dimensions of their service to loved ones:

• “Being a caregiver for my dad was the toughest job I have ever had, and yet what a privilege to be there for my parent during the last year of his life as he was for me during my first.”
• “Being a good caregiver has many answers, I’m sure. However, in my case, it was the fact that my mom had total confidence in me and there are no words to describe that feeling.”
•  “It was tough but caregiving did a lot for my soul. I was able to make sure he knew I loved him, not just in deed but in words. I was able to help him deal with his pain, and what an amazing feeling to know you have comforted someone you love. The greatest reward is being able to give back to him. He was my big brother and he did a lot for me and there is no price I can attach to how great I feel even now—that I had the opportunity to give back AND let him know I loved him so.”

These heartwarming and profound thoughts are merely a sample of the responses I have received when asking family caregivers about the rewards they find in their caregiving experiences. Their insights never cease to touch me.

You will undoubtedly discover your own collection of caregiving treasures. You can find them by pausing and consciously asking yourself how caregiving has rewarded you.

As a first step, I’d invite you to set aside at least fifteen minutes to brainstorm and write down all of the rewards that you have found in caregiving for your loved one. After your brainstorming exercise, review your list to identify the caregiving rewards that are most significant to you. What makes these rewards particularly meaningful?

As a second step, consider keeping a gratitude journal. On a daily or weekly basis, write in your journal about the best parts of your caregiving experience. By looking for the good, you will find the good. What you discover may surprise you.

Caregiving is not wholly about illness, aging, disability, burden, and stress. Please let caregiving reveal its beauty to you. When you’ve committed yourself to be there for your loved one, there are moments you’ll remember forever, lessons you’ll apply to the rest of your life, and attitudes that will be permanently adjusted as a result of your caregiving experiences. These are but a few of the significant rewards that caregiving offers.

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Consider the good—the REWARDS—you’ve found in your caregiving experience:

•       What is rewarding about being a caregiver?
•       How has caregiving improved your understanding of life, other people, yourself?
•       How can you continue to cultivate the positive aspects of caregiving?

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“Cultivating Rewards” is a component of Dr. Blight’s Model of Caregiver Resilience . By examining a care situation in light of the five “R” words (Roles, Relationships, Realities, Rewards, and Readiness) in the model, you can identify areas that are causing friction, figure out how to address challenges, and learn to make the most of your circumstances. We have been discussing each of the five domains of caregiver resilience, one at a time, over the course of five months. Next month’s blog will focus on “Readiness.”

If you’d like to invite Dr. Blight to speak to your group, please contact us.

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Family caregivers often report that caring for a loved one is among the hardest things they’ve ever done. Until you’ve assumed the responsibilities of caregiving, you’re probably unaware of the multi-faceted commitment that must be made to meet the ongoing needs of a loved one who depends on you. Nevertheless, when caregiving calls, you eventually discover how the physical, emotional, relational, and spiritual dimensions of caregiving can cause deep distress and dissonance in your life.

Caregiving has a way of rudely introducing you to things you never wanted to think about. You may choose to ignore some of these things, preferring to avert your eyes from the stark view in front of you. Avoidance can become a default position because it may be more comforting to choose not to think. Denial is a related but slightly different strategy: you know what may occur but refuse to accept that it applies in your situation. Another approach is busyness, where you can be so focused on your “to do” list that you don’t have time to manage the tough stuff.

As difficult as it may be, the best way to handle the hard realities of caregiving is to confront them. When caregivers honestly confront the most troubling aspects of their experiences, they place themselves in positions to find support and solutions that will help.

Every caregiver will face a personalized set of hard realities. While the list of challenges that could arise in caregiving is extensive, here are five hard realities that can deeply affect caregivers as well as care receivers.

Hard Reality #1: Bodies fail.

It’s amazing how easily we take our bodies for granted. We don’t even think about how much we need a particular body part until it’s no longer working for us. You know what I mean if you’ve ever broken a bone, had an organ failure, or thrown out your back. Hopefully you were able to recover and restore proper functioning. But if you’ve ever experienced such incapacitation, then you have caught a glimpse of what care receivers experience. Many care receivers—especially those who are older—traverse through a sequence of bodily failures, one after another.

As if the physical implications of a failing body aren’t bad enough, some bodily failures can also be socially stigmatizing because they make care receivers feel inferior, even less than human.

Care receivers should never feel ashamed of a bodily failure because this is actually the natural order of life. As a caregiver, you have the ability to reduce the potential embarrassment of your loved one and help them retain human dignity by choosing to take their bodily failures in stride.

Hard Reality #2: Sometimes the treatment is worse than the disease.

We are fortunate to live in a time when the miracles of modern medicine enable people to be treated for many serious illnesses and chronic conditions. But some things cannot be fixed, no matter how many medical procedures a person receives. And some things don’t warrant fixing, especially if the patient has lived a full life and finds going through treatment less attractive than living with a medical condition.

In his groundbreaking book, Being Mortal, Dr. Atul Gawande raised compelling questions about the moral implications of relentlessly pursuing medical treatments regardless of the impact such treatments may have on a patient’s overall quality of life. He writes, “The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all. Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul. Yet—and this is the painful paradox—we have decided that they should be the ones who largely define how we live in our waning days.”[1]

Dr. Gawande suggests that patients, especially those approaching end of life, often have priorities that are outside of the hospital. If the patient finds treatment to be worse than the disease, then it may be time to forego treatment—and that is the patient’s choice to make.

Hard Reality #3: Caregiving causes stress.

Caregiving introduces an entirely new level of stress in your life. At any moment, day or night, you may have to abruptly stop what you’re doing to address your loved one’s immediate need. Sometimes these interruptions are momentary inconveniences, while other times they can completely derail your day or your week.

The frequency and severity of these interruptions are driven by your loved one’s health conditions. Your loved one’s exigencies can make it difficult for you to plan for things like out-of-town trips, daylong excursions, or even a night out for dinner. It can become hard to plan for anything in the future, because your loved one needs you here and now.

The stress induced by caregiving includes a nagging sense of never doing enough despite doing all you can do. It’s accompanied by the knowledge that your loved one is always vulnerable. Studies have repeatedly demonstrated that family caregivers are more prone to stress-related illnesses than people without caring responsibilities. If caregiving is causing you stress, you will benefit from stress reduction techniques like those mentioned in Chapter 6 of When Caregiving Calls.

Hard Reality #4: Caregiving can be an emotional roller coaster.

Caregiving produces a wide range of emotions, from extreme highs to extreme lows and everything in between. While caregiving delivers unexpected moments of joy and solace, it will also challenge your emotions in ways that you haven’t experienced before. Many caregivers carry a worrisome anxiety that causes them to feel emotionally spent, tired, and depressed. Research has shown that rates of clinical depression are markedly higher for caregivers than for the general population. Moreover, guilt and grief—the two “G” words of caregiving—usually make their presence known at various times throughout the caregiving journey.

To help people think about the emotions they feel as they fulfill the caregiving roles, I have created a downloadable list of 148 emotions. If you’re a caregiver, I’d encourage you to download this list and spend a few moments in thoughtful reflection, identifying the emotions you have experienced as you’ve been helping your loved one.

If you perform this self-assessment and find yourself gravitating toward several negative emotions, it’s a strong indication of the impact that caregiving is having on your mental health. It’s important for you to know that negative or anxious feelings are very normal for caregivers. At the same time, please don’t let yourself ignore such feelings. Although caregiving for your loved one is never going to be easy, things will be better when you obtain the support you personally need to address your emotional struggle.

Hard Reality #5: Death happens.

Even after a prolonged period of caregiving, “death” can be the unspeakable word that is never uttered. Our culture tells us that death is to be prevented, battled, resisted. Yet we paradoxically know that death is the inevitable course of our lives.

Caregivers escort their care receivers on a final journey toward the last breath of life. Knowledge of the ultimate destination doesn’t necessarily make either traveler eager to get there. On this trip, you’ll rarely hear a caregiver or care receiver ask, “Are we there yet?” because there are taboos which prohibit such a question. In fact, this might be the only journey where the more frequent question is: “How can we delay our arrival?”

Until you’ve encountered hospice care, you may have never considered the idea of a “good death.” What is a good death? It’s a question that hospice professionals ask all the time. Perhaps that’s why “hospice” is another word that people don’t like to say. However, many families find that hospice offers a refreshingly honest view of death, not to mention life. Honesty about death opens the mind to a greater appreciation of the entire life course, up to and including its final stages. As the fear of death dissipates, the ability to explore and embrace the final moments of life increases.

 Confronting Your Caregiving Realities

If you’re a caregiver, there are things you may not want to think about. Hard things. Things that make you uncomfortable. Starting with the questions below, please take an inventory of your toughest realities and decide to confront them. In so doing, you’ll be opening the door to the possibility of better circumstances for your loved one as well as yourself.

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Consider the REALITIES of your caregiving experience:

•  What is hard about being a caregiver?
•  What are the physical, emotional, financial, and spiritual realities you must confront as you care for your loved one?
• How can you respond more effectively to your specific caregiving challenges?

“Confronting Realities” is a component of Dr. Blight’s Model of Caregiver Resilience. By examining a care situation in light of the five “R” words (Roles, Relationships, Realities, Rewards, and Readiness) in the model, you can identify areas that are causing friction, figure out how to address challenges, and learn to make the most of your circumstances. We are discussing each of the five domains of caregiver resilience, one at a time, over the next few months. Next month’s blog will focus on “Rewards.”

If you’d like to invite Dr. Blight to speak to your group, please contact us.

[1] Gawande, A., 2017. Being Mortal: Medicine and What Matters in the End. London: Picador

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Caregiving changes relationships. While this can be disorienting and unwelcome, it’s among the most important things for caregivers to realize as they seek to meet the ongoing needs of a loved one who is aging, sick, or disabled. By recognizing that relationships are changing, caregivers are also uniquely positioned to honor their relationships with care receivers.

If you’ve become a family caregiver, you and your loved one have a shared relationship history. Perhaps you’re caring for your spouse, your parent, your uncle, or a friend. Whatever that relationship is, your interactions with your loved one were historically based upon the roles (e.g., parent-child) that each of you filled in the relationship. The role that you have played in the relationship has personal significance and meaning. The history between the two of you continues to affect the way you perceive and interact with your loved one today.

Caregiving requires a different type of role-based relationship between two people. Remember from last month’s post that the caregiving roles only emerge because of an unanticipated health condition. Nevertheless, if you do it long enough, caregiving will alter the nature of your relationship with your loved one.

You can see how your relationship has changed by comparing the terms of your historic relationship with your loved one to the new terms of your caregiving relationship with your loved one.

For example, think about your relationship with your mother. She bore the special responsibility of raising you when you were a child. Now that you’re an adult, your historic relationship with your mother is embedded in your subconscious mind; it affects how you perceive your mother and how you act around her, even today. Your mom has played a singular role in your life, and it’s hard to imagine her in any other way.

When the mother who cared for you becomes dependent upon care by you, the change can be unexpectedly difficult to comprehend and accept. You might begin the early stages of caregiving by reminding your mother about things she forgets, but eventually, you may find yourself changing your mother’s adult diapers. Family caregivers are not only dismayed to observe a loved one in such need, but they also often struggle to navigate the degree of their own involvement in the caregiving tasks that are required.

Chapter Three of When Caregiving Calls presents research from applied gerontology suggesting that family caregiving is marked by a series of role-based transitions, which start from an initial set of family relations and change over time due to changes in the caregiving context. As the care receiver’s needs become greater, the caregiver’s actions must change—and this changes the caregiver’s role identity within the relationship.

Thus, if you’re caring for your mother, the parent-child history of your lives together becomes intertwined with—or perhaps even subsumed by—the tasks of caregiving that you’re now performing for her. You may even reach the point that you start to ask yourself: who am I now in this relationship?

Although you’re observing changes in your relationship with your mother because of her care-related needs, the woman you’re caring for is still your mother. As a result, honoring your relationship with your mother is a critical component of continuing to care for her.

There are three steps to honoring relationships while caregiving:

1. Remembering your historic relationship with your loved one;
2. Acknowledging that things are changing due to your loved one’s health conditions;
3. Adapting to the terms of an emerging care-based relationship with your loved one without forgetting the history you share together.

Adapting to the terms of a new care-based relationship with your loved one could involve uncomfortable topics of conversation concerning your loved one, the performance of caregiving tasks you never had to do before, or spending more (or less) time together. As the needs of care receivers continue to evolve over time, caregivers must make corresponding adjustments. Through it all, family caregivers remember in their minds and hearts that the person they’re caring for is special.

Honoring relationships allows caregivers to nurture and continue to be present for the important people in their lives. While the functions of caregiving may change the nature of interactions between participants, the historic relationship bond between caregivers and their loved ones motivate caregivers to summon the strength they need to continue to care.

Consider your RELATIONSHIP with your loved one, the care receiver:

• How would you describe your historic relationship with your care receiver?
• How would you describe your current relationship with your care receiver?
• How has caregiving affected your relationship with your care receiver?
• How do you feel about the changes that caregiving has brought into the relationship?

“Honoring Relationships” is a component of Dr. Blight’s Model of Caregiver Resilience. By examining a care situation in light of the five “R” words (Roles, Relationships, Realities, Rewards, and Readiness) in the model, you can identify areas that are causing friction and figure out how best to address those challenges. We are discussing each of the five domains of caregiver resilience, one at a time, over the next few months. Next month’s blog will focus on “Realities.”

If you’d like to invite Dr. Blight to speak to your group, please contact us.

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Roles are positions we occupy in the social world. Roles are central to our human relationships as well as our place in society.

Consider these famous words from William Shakespeare:

• All the world’s a stage,
• And all the men and women merely players;
• They have their exits and their entrances;
• And one man in his time plays many parts…

Shakespeare proceeds to trace the roles a person plays in life, up to and including “the last scene of all,” which he describes as “second childishness…sans teeth, sans eyes, sans taste, sans everything.”¹

Although Shakespeare paints a grim picture of life’s final act, he’s also keen to observe how declining health conditions force role changes for people at the end of their lives.

“Care receiver” is among life’s least coveted roles.

And we know that caregivers don’t exist without care receivers.

In Chapter Two of When Caregiving Calls, I describe caregiving by using the metaphor of a stage play, borrowed from the work of sociologist Erving Goffman.² In a caregiving play:

• the care receiver is the star of the show;
• the script is written by the care receiver’s health conditions;
• and the caregiver is a supporting actor.

With caregiving, nobody knows exactly when the curtain will fall and this play will end—not the audience, not the critics, not the supporting actor, not even the star of the show. We do know, however, that when the show is over, the star performer may not be there to take a bow.

While every caregiving storyline is unique, the care receiver and caregiver are always, respectively, the primary and secondary roles in an unfolding drama.

By understanding the roles implicated in caregiving, the caregiver is able to make adjustments to an emerging caregiving story. In making these adjustments, the caregiver learns how to fulfill a supporting role that is exclusively for the care receiver.

As new dimensions of a care-based relationship evolve over time, both caregiver and care receiver adapt their positions but continue to be present for one another.

A reciprocal understanding naturally emerges. Aware of one another’s obvious imperfections, caregiver and care receiver develop a mutual acceptance and, at times, admiration for each other. The roles of caregiving thereby produce a symbiotic relationship that has the potential to reward both of the principal actors.

Consider the significance of ROLES in your personal caregiving story:

• How would you describe your caregiver role? How do you feel about it?
• How would you describe the role of your care receiver? How do you think your care receiver feels about it?
• Take some time to write your caregiving script. What is the storyline? What are some of the lines your role calls on you to speak?

“Understanding Roles” is a component of Dr. Blight’s Model of Caregiver Resilience. By examining a care situation in light of the five “R” words (Roles, Relationships, Realities, Rewards, and Readiness) in the model, you can identify areas that are causing friction and figure out how best to address those challenges. We are discussing each of the five domains of caregiver resilience, one at a time, over the next few months. Next month’s blog will focus on “Relationships.”

If you’d like to invite Dr. Blight to speak to your group, please contact us.

¹Bloom, H., 2004. William Shakespeare’s As you like it. Philadelphia: Chelsea House.
²Goffman, E., 1959. The presentation of self in everyday life. Garden City, New York: Doubleday.

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“It’s the most wonderful time of the year,” sings Andy Williams in his well-known Christmas song, one of my personal favorites. The holiday season usually marks a time of happiness, togetherness, faith, hope, and thankfulness. But this year things might be a little different with the threat of COVID-19 and the measures you must take to reduce the risk of transmission. If you’re a caregiver, you have a particularly daunting challenge: not only must you look out for yourself, but you must also protect your vulnerable loved one.

In addition to following public health guidelines of mask-wearing, hand washing, and social distancing, I’d like to offer five tips especially for caregivers in this unusual holiday season.

1. Recognize that your loved one needs you now, more than ever. No matter how difficult the situation may be, this isn’t the time to step away from caregiving. Your loved one’s vulnerability is even greater in a COVID-19 world, and you are positioned to have a major impact on your loved one’s safety and wellbeing.
2. Focus on what you can control, not what you can’t control. Caregiving regularly reminds you that you have limited control over things like your loved one’s condition, treatment, or prognosis. As if that wasn’t enough, the current COVID-19 crisis may make you feel as if life itself has spun out of your hands. Despite such uncertain circumstances, your sustained efforts to address things you can control will allow you and your loved one to lead the best lives possible at the present time.
3. It’s still okay for you to get help with the tasks of caring. Caregivers often feel a responsibility to “go it alone” in helping a loved one. A woman I met during a podcast last week called this a form of sacrificial love. However, if you’re sacrificing so much that you’re barely hanging on, then it’s time to give yourself permission to get help. By “sharing the caring” you’ll find some welcome relief—just make sure that those who offer assistance are also doing their part to keep your loved one safe.
4. By caring for yourself you’re better prepared to care for others. As a caregiver, you may be so focused upon the needs of your loved one that you fail to take care of yourself. If you neglect your own needs, you can experience significant physical, mental, or emotional challenges of your own. Good self-care habits will make it easier for you to stay healthy and strong for your loved one who depends on you.
5. Interacting with your loved one during a COVID-19 holiday season may be different, so learn to adapt and step up your efforts. The public health measures to address the pandemic have contributed to unintended consequences of loneliness and social isolation for vulnerable people. If your loved one is feeling such emotional effects during the holidays, find permissible ways to brighten their day and raise their spirits. While you may not be able to show love in your preferred manner, your sustained efforts to be there will let your loved one know how much you still care.

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Caregiving consultant and healthcare speaker Dr. Aaron Blight is happy to answer questions on Quora about caregiving organizational development, healthcare consulting, senior care, and many other topics. In this month’s post, we highlight his recent answer dealing with aging parents and emotional support from their adult children. At the time of publishing this piece, Dr. Blight’s response (posted below) has nearly 500 upvotes!

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