Most people who take on caregiving aren’t prepared for how quickly this massive responsibility takes over your life. But despite all the challenges, caregiving can be a meaningful and even positive journey. According to AARP’s Caregiving in the U.S. 2020 report, just over half (51 percent) of family caregivers felt that their role has given them a sense of purpose or meaning.
Being a caregiver is not without its stresses. When I was inadvertently thrown into the caregiving world years ago, I knew nothing about elder care. Truthfully, if I had known what I was going to be doing, I probably would have said no to caregiving altogether. Like me, many caregivers are thrust into this position with very little time to adapt and learn. We hit the ground running and are often forced to figure things out as we go. But this is a high-stakes role, and care decisions can weigh heavily on our hearts and minds. Instead of letting this burden get to us, we must become empowered caregivers to benefit ourselves and those we care for.
This is my story about how I committed to caregiving, adapted to my role, overcame caregiver burnout, and learned to thrive despite the many hurdles and setbacks I faced while caring for my in-laws.
My Experience As a Family Caregiver
My husband and I shared a close relationship with my ex-husband’s father. It’s odd, I know, but he was my daughter’s grandfather. Over the years, we had become very close. We shared Sunday night dinners together and even after my daughter left for college, the dinners continued with just three of us. We went to the same restaurant every Sunday night.
One of these nights, my ex-father-in-law was very quiet. About halfway through a rather uncomfortable meal, he asked me if I would pay his bills and check on his wife (who suffered from severe arthritis and dementia) while he was recuperating from a planned medical procedure. He was to undergo open-heart surgery at 83 years of age. Although it is not uncommon for people in their 80s to undergo this very invasive, dangerous surgery, I was concerned. When I asked why he was doing this, he looked at me with soulful eyes and said, “Because I want to see ‘the butterfly’ (his nickname for my daughter) graduate from college, and I can’t do that if I don’t have this operation.”
You can imagine the impact of such a statement. I agreed to help him without giving it any further thought, never imagining that I would be sitting here today sharing information about caregiving. I was naive and assumed this favor would be a minor investment of my time.
However, the 14-hour operation was only the beginning of what would be the most fascinating education of my life. I knew nothing about elder care or caregiving, but I learned quickly about hospitals, doctors, nurses, protocol, bureaucracy, insurance forms, Medicare, prescription drugs and how to manage them. I made the harsh realization of how easy it is to get lost in this system and, consequently, spent a good portion of the first year learning how to advocate for my ex-father-in-law. My learning curve had to be swift and precise—his well-being depended on it.
My agreement to pay bills and check on his spouse rapidly turned into a full-time obligation. My ex-mother-in-law was suffering from severe dementia and I discovered that her in-home caregivers were not caring for her properly. Their house was in disrepair. The professional caregivers needed to be replaced and the new aides needed training. The bills needed attention and past due bills needed to be seen to immediately. I eventually found that the key to keeping her content and avoiding agitation was carefully managing her medications, which required special focus. I was spread thin with morning and early evening visits to the hospital each day and emergencies added into the mix. Somehow, after a few weeks, I managed to create a schedule that worked for everyone—except me.
Then, it happened: a stroke. The doctors had warned that it might, and it did. It wasn’t a major, life-threatening stroke, but it was debilitating nonetheless. Everything changed at that point and my ex-father-in-law’s recovery become even more difficult. Suddenly, he was off to a new hospital where no one knew him and everything was unfamiliar to both of us. I struggled to get to know his medical care team all over again. He eventually transferred to a new facility for rehabilitation and we both started over once more. Depression slowly set in as he worked to improve his functional abilities, knowing that the activities he once loved would no longer be a part of his life.
After a month of rehabilitation, he finally returned home, but my role didn’t end there. There were still numerous medical issues to deal with: insomnia, depression, seizures, weakness, incontinence, mobility problems, balance issues, and the day-to-day challenges that the elderly experience when age begins to take a toll on the body.
It became clear then that my role was not going to be temporary. If someone had told me years ago that I would be a caregiver for my ex-father-in-law, I would have thought they were crazy. But this became my life. I didn’t have time to think about the consequences of this change for me. I had work to do, and I was insistent that I wouldn’t let him down. I was on call 24/7, 365 days a year. I would visit him daily and help manage his wife’s care as well. Sometimes we would have beautiful visits full of laughter and remembrances, but then there were other days when he was downright mad at the world and I would take the brunt of his anger. (Sound familiar?) There were also days when he would just sit and stare into space. I would read aloud or chat aimlessly for what seemed like hours and hours just to fill the air with sound.
During those five and a half years, his wife and daughter both died. He had numerous setbacks, both emotionally and physically, and it was a great balancing act to keep him comfortable and reasonably content given the circumstances. I cared for him for almost six years until his passing in July 2009.
How to Survive Caregiving
Now that you’ve heard my story, I want you to understand that my caregiving days were often wrought with anxiety, pain, sorrow, suffering, self-pity and frustration. That is, until I learned how to become an empowered caregiver. This was no easy task, but today, it is my mission to share my experiences, knowledge, understanding and compassion for those who find themselves in the caregiving trenches. Most of us accept this role as it arises, but we do not have to fall victim to it and live a life in constant crisis mode. Choosing to survive and thrive is up to us.
What is the key to surviving caregiving? I believe it is being fearless and empowered. When you break free of your limiting beliefs and the overwhelming feelings of incompetence, frustration, anger, guilt, resentment, sadness and fear, you will become truly empowered.
According to the Merriam-Webster Dictionary, the definition of “empower” is “to give official authority or legal power to; to promote the self-actualization or influence of.” But those are just words, right? How are they supposed to help? Hear me out. When you break it down, it suddenly becomes very clear. Power, authority, confidence, self-actualization—these are the things that should define your role. Otherwise, caregiving will define you, your life, your attitude and your health. That is when caregiver burnout creeps in and keeps you from leading a fulfilling life and taking good care of your loved ones. Nobody truly benefits in such a scenario.
Dealing With Caregiver Crisis Mode
Create a new framework to empower yourself to make the best care decisions possible. If you are struggling to take control of your caregiving situation, start by asking yourself these basic questions:
- Are you are prepared?
- Are you clear about your role and your boundaries?
- Are you intimidated by the health care system?
- Do you understand the person you are caring for and their needs?
- Do you honor yourself—your physical, mental and social needs—while caregiving?
Every situation is unique, but taking control of these fundamental issues can get you started on the right foot. Are you unprepared legally, financially or logistically? Does the elder care industry baffle you? Is your care plan lacking boundaries? Do what you can to self-actualize and work through these challenges, but never hesitate to seek help.
Consult with an elder law attorney to get the legal documents you need to be an effective caregiver. Visit your local Area Agency on Aging (AAA) to receive benefits counseling, a senior needs assessment and a primer on the different levels of long-term care. Join a support group to connect with fellow caregivers and gather caregiving tips, advice and ideas. Hire in-home care or enroll your loved one in adult day care to ensure you get regular respite. Make an appointment with a counselor to help you set boundaries, achieve balance in your day-to-day life and make yourself a priority.
There are resources at your fingertips, but it is up to you to recognize your needs and act on them. When accepting the role of family caregiver, you have the power to mitigate crisis mode by acknowledging this new normal and seeking help for yourself and your care recipient. Embrace empowerment and you’ll be ready for whatever challenges and care decisions caregiving throws your way.
