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