According to the AARP Public Policy Institute’s Caregiving in the U.S. 2020 report, an estimated 47.9 million Americans have provided unpaid care to a family member or friend age 18 or older at some point in the past 12 months.
The reasons family caregivers cite for taking on this role range from love and compassion to duty and obligation—or some combination thereof. In fact, the AARP report found that more than half (53 percent) of caregivers feel they have no choice in the matter.
Even in the most loving and balanced situations, caregiving can cause physical strain and emotional stress. Unfortunately, when you feel trapped in a cycle of unrealistic demands and feel you can’t say no, caregiver burnout is inevitable.
Unpaid care is the primary safety net for disabled and elderly individuals in this country. The value, the stakes and the risks of informal care agreements are all high, so it is crucial for caregivers to approach these serious responsibilities realistically.
Evaluate the Caregiving Commitment
Caregiving catches most people by surprise—often by slowly ramping up over time or by becoming intense very suddenly. In both scenarios, few family caregivers have the presence of mind to carefully contemplate the enormity of their role and its short- and long-term effects on their lives. However, properly evaluating the potential impact of the caregiving commitment is crucial.
“Caregiving can last for years, and it can take over your life if you let it,” acknowledges former family caregiver and caregiving coach Cindy Laverty. “Most of us didn’t plan on being a caregiver and never thought about the issues or the time commitment involved.”
You must have an honest, realistic talk with yourself about these things. The earlier in your caregiving journey you do this, the better. Ask yourself how much of a commitment you are willing and able to make. Get clear about what you can do, what you will do and what you will not do. Caregiving is not a one-person job no matter how badly you want to do it all.
Those who know how to manage expectations and priorities in their own personal life tend to fare best as caregivers. “Knowing what matters most in your life helps you put things into context,” explains Laverty. “This is your final journey with someone you love, so what do you want that journey to look like? How do you want your life to look once your journey is over? Do you want your marriage intact? Do you want and/or need to continue working during and/or after caregiving? You don’t have to do everything, and you shouldn’t. Caregiving is only one component of your whole life.”
After you’ve clarified your role in your mind, have a family meeting to get your parent(s) and other family members on board before a crisis arises. Checking in with yourself and your family on a regular basis will help you all cope with unforeseen circumstances and remain on the same page.
Learn When to Draw the Line With Family
My own caregiving experience was greatly enhanced when I finally learned the value of setting boundaries. My mother has borderline personality disorder and my father is a passive enabler, so I grew up in a family with very few boundaries. My parents lacked the ability to understand where they stopped and others started—the most basic principle of healthy limitations. Consequently, they were in no position to teach me anything except that boundary violations are a normal part of an intimate relationship.
As I left my past behind in pursuit of healthier ways of engaging with others, I also gained the courage to establish and maintain personal boundaries. I learned to say “no” and keep saying it until the other party believed I was serious. I learned to withstand the tantrums and tirades that came with no longer letting other people take advantage of me. I also gained the ability to understand that I truly was a caregiver by choice, not by constraint or obligation, and that I was capable of defining some of the terms of my commitment.
When I read posts in the Caregiver Forum and comments on my blogs, I realize that many people are hurt most by their inability to set and maintain boundaries with their care recipients and other family members. Yes, Dad would like to continue to live with you and make your life hell with his criticism, demands and refusal to cooperate with his own care plan. After a lifetime of bowing to Dad's demands, you might have actually come to believe his version of reality where you must allow him to consume your life.
Or, a previously kind loved one may suffer from dementia, which renders them incapable of making rational choices about their care and how they treat you. Guilt, obligation and the desire to be a good spouse or child all pressure caregivers to disregard their limits and place their care recipients’ needs before their own. This seems to be the underlying dynamic of many posts (read, cries for help) that I’ve felt sad reading.
In her own experience and her work with other caregivers, Laverty has realized that many seniors—even those without existing personality disorders like my mother—tend to become more narcissistic and self-absorbed. “All that matters is that their needs are being met immediately,” she notes. “They demand and demand more. At some point, you’re going to have to say, ‘I can’t do that right now.’ ”
Respecting Your Caregiving Limits
If you are sick or too stressed to function well, you’re not going to be a very good caregiver. Healthy boundaries allow you to be generous to and compassionate with others while also extending these same considerations to yourself.
With practice, you can negotiate and compromise to accommodate your loved one’s wants and needs while still prioritizing what you need to find health, joy and pleasure in your own life. Successful caregiving involves maintaining a very careful balance. It’s true that your loved one won’t get everything they want when you begin respecting yourself and putting your needs first. At first, that may seem detrimental to your care recipient (and they will probably see it that way, too, especially if they are used to getting their way). However, your boundaries will protect you from depleting yourself by giving in to all of their demands. Ultimately, the care that you do choose to provide and the interactions you continue to have should be better because of it.
Finding a balance may be harder than it sounds. You might think to yourself, “I can’t say no to Mom!” But your mom probably said no (and did so frequently) when she was taking care of you as a child. “Sometimes in life the answer has to be no,” Laverty asserts.
It may seem like you have no choice but to provide care for your loved one, but you do have options. It’s up to you to explore them and exercise them. Each caregiving situation is unique, and it’s important to understand that not everyone is cut out to be a caregiver. Saying no to caregiving as a whole is just as acceptable as saying no to individual caregiving tasks and unrealistic remands.
Empower Yourself and Learn to Say No
Saying no to elderly parents is hard. Where do you start if this is a new skill you would like to acquire? Begin with small steps, and be sure to validate your effort when you see positive results.
People who are used to wielding power and having things their way may not respond well to initial changes in the dynamic, but don’t let that deter you. You can explain the situation, but keep it simple to avoid creating room for badgering and ongoing discussions that insinuate your boundary was merely a suggestion. Then you must follow through. It may take a while for your loved one to accept the new you, but in many cases they don’t have much of a choice, do they?
These are hard words, but when you are fighting for a livable life, I think they are fair enough. If/when they do come to accept the new you, you may discover pleasure in your relationship that was previously missing.
If this is new to you, it will definitely feel scary at first, but please know that it gets easier. This is a process that may take time. Be patient with yourself and keep in mind that the long-term rewards can be great!
If you need additional help, your local library should have self-help books that will guide you through this process and give you concrete strategies to get going. There are even books for specific situations, such as setting boundaries with aging parents. If you can afford to, targeted counseling sessions can be extremely beneficial as well. The added support and validation may be what it takes for you to change how you interact with a loved one—and yourself.
“Don’t just stay on a runaway train,” Laverty urges. “Once you get to the point of complete overwhelm, you will ruin your health and destroy your relationships. Ultimately, burning out from the stress leads to giving up and just walking away. Get help before you reach the breaking point.”