My journey into caregiving started at age 15 when I was diagnosed with third stage rhabdomyosarcoma. During my almost four years of treatment, I battled it out with cancer. My family, and especially my mother who was my primary caregiver, along with my church family, my pastor and his wife, all taught me how to care for those who were experiencing their worst days dealing with the issues of life. There were truly times when I felt that life was leaving my body. This experience made me make what I call — a deal with God. I told God, “If you save my life, I will dedicate the rest of my life to You.”
In the 30 or so years since that “deal” with God, I have journeyed with more than 500 caregivers as they faced serious illnesses. I am also the primary caregiver for my son who has autism with developmental delays and apraxia, and for my daughter who was diagnosed with lupus two years ago.
To care for another is an awesome privilege, but there is an old adage that says, “it is also an awesome responsibility.” Many times, we reason that this is not what we signed up to do in life. However, I am happy that I have the opportunity to fulfill this honor. There are times when I feel like kicking and screaming and am a little bitter that there is not someone else to shoulder the load, but I still am thankful for the opportunity. The load of the caregiver is tedious, wearisome at times, lonely, challenging, and to put it simply, hard! But it is also rewarding to be the one that nurtures those we care about back to good health or to peaceful rest.
The load of the caregiver is tedious, wearisome at times, lonely, challenging, and to put it simply, hard! But it is also rewarding.”
As a caregiver, we need to know first and foremost that we are human. We will not get it right all the time. We will lose patience. We will get angry. We will get frustrated. We will have to learn to ask for forgiveness. The persons we are caring for will not always express gratitude. In fact, quite often they will be mean, crude, and take their disappointments out on you. It is quite normal that those facing illness will take their pain out on those who are closest to them. We give them the space, but we also must have difficult conversations that involve our best efforts to set boundaries and reminders of appropriate ways to correspond when the woes of the diagnosis are difficult to articulate. From caregiver to caregiver, both for those new to caregiving and those who have been at it for some time, I am compelled to tell you that you cannot do this alone! Remember that you are human…right?
You will need support! Ask for help! It doesn’t matter if it comes from clergy, a therapist, a friend, a family member, a support group, or a community-based organization. The most fruitful relationship for me is my relationship with God and folks who encourage me in my faith. What has been the most helpful and useful are the relationships that I have built with individuals who are caring for loved ones with a similar diagnosis. I always ask: How are you surviving? Any new connections? I have this issue…what do you suggest? What don’t I know?
I hope that one day we will get to a place of coordinated health care, a day where we will have a health care system that will be able to provide a cohesive streamlined way of care that checks all the boxes of all involved when caring for our loved ones. Right now, though, you are the greatest advocate for the person to whom you are providing care. According to John Hopkins Medicine, a good health care advocate is someone who knows the one they are caring for well, who is calm, organized, assertive, and comfortable asking questions. As a caregiver, we must be bold enough to ask the questions we don’t have the answers to and insist that those who do take the necessary time to answer our questions and clear up our confusion.
— Elder Angela Overton, M.Div.
P.S. Read about one couple’s experience of living with dementia.