The Domino Effect: Caregiving Piles Up

  • For most of us, caregiving begins subtly. An errand here. A doctor appointment there. Fix something at the house, today. Help with the checkbook, tomorrow.

    To be sure, a stroke or accident – something that happens in a flash – can turn our lives upside down. Even then, however, we often don’t take time to label ourselves caregivers. We just jump in and do what is needed. Then the domino effect takes over.

    Here’s my story. Here’s how the domino effect took over, long before I stopped and said to myself, “I have a job. A huge job.”

    I was doing some freelance writing, but that didn’t pay much. I was caring for two children, one with undiagnosed health problems – more developing by the day. My in-laws’ need for help was ever increasing. My mother was scheduled to have a second hip replacement. My childless aunt and uncle had moved to North Dakota to be with us, their only family. Then my aunt died from cancer and my uncle got busy having strokes.
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    My mother’s first hip replacement had left her unsteady so she used a walker. Her mind was still pretty good, and she still drove, so she was driving my newly widowed uncle to his doctor appointments. Mom called me one morning from the clinic. She had fallen in the snowy clinic parking lot as she was trying to get my uncle out of the car for an early appointment. She got up, but said taking Uncle Wilkes to the doctor was now my job.

    My dad, the night before, had developed a high temperature from an infection and was hospitalized, so both Mom and I were dealing with that, too. My eight-year-old son was home sick.

    When Mom called after her fall, I started flying around, handling all of the emergencies. It was natural, since I’d just finished a five year stint caring for my elderly, totally deaf neighbor. Emergency mode was my norm. Sick child? Got it! Elder fall? Got it! Hospital run? Got it!

    Mom had her second hip replaced and never fully recovered. Dad ended up having brain surgery which left him totally demented. My uncle had a massive stroke, which left him in a nursing home, where my dad eventually joined him. My father-in-law died, leaving my mother-in-law alone in the condo, with her growing paranoia. The doctors continued to be baffled by my son’s illnesses.

    My days went like this: Get the kids up and ready for school (or see if Adam was well enough to go) and drop them off. On the way to Mom’s, stop at the grocery store for her fresh fruit and other things she wanted (you see where this is going)?

    Drive over to Mom’s apartment and help her shower and get breakfast. Throw in some laundry at her place and drive back home to throw in my own laundry. If Adam was home, see to his needs. If I’d dropped him off at school, I’d always worry if he would be able to stay for the day – no cell phones then. Drive back and pick up Mom so I could take her to the nursing home to see Dad and Uncle Wilkes.

    While Mom visited, I’d go to fix lunch for my mother-in-law and visit with her. Then, I’d go back to the nursing home and visit Uncle Wilkes and Dad, then take Mom home, then go get kids. This was a normal day – one without Mom falling, so I had to go over at night. One without an emergency at the nursing home that meant I had to meet someone at the ER.

  • It all just happened. I didn’t plan that one day I would spend nearly all day, seven days a week, taking care of a handful of elders and my kids. I didn’t plan on my darling young son having Juvenile Rheumatoid Arthritis, asthma, obsessive compulsive disorder, migraines and depression kick in after a viral infection. His brother had the same infection, and, thankfully, was left unscathed. I didn’t plan on any of it. It just happened.

    The needs of others took on a proportion that I still find hard to believe. I just picked up one person after another as a “dependent.” Hindsight tells me I should have done what I now preach when I speak to groups – detach with love. Get respite care. Hire some help. Tell others that I, too, need time and some care.
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    But I know myself. I wouldn’t have done that. I didn’t have the wisdom hindsight now gives me. To be fair to myself, the services we now have available (on some scale) were barely getting going. Most of them weren’t available at all. It was just expected that family would care for their elders. But most people didn’t have so many elders, with only one person carrying the primary load. And most people didn’t have a child for whom they had to battle schools, relatives, doctors and others who didn’t understand what was happening.

    It creeps up on you – this caregiving thing. One person at a time. One disability at a time. You don’t stop to count. Someone needs help. You go. You help. It’s only in hindsight that you think back and say, “How’d I do it?” I’m still wondering.

    The last years of elder care, I was divorced and working about 48 hours a week at a newspaper. My son still needed a lot of my physical and emotional time.

    Now my elders are gone, but my son still needs support. He’s dependent on me financially and emotionally. He’s had to handle a lot of pain – physical and emotional – more than any young person should.

    Meanwhile, I try to share with others what I’ve learned from my two decades of elder care. I’ve only recently, with my son’s permission, begun sharing his story. He’s very open, as he knows it can help others.

    It seems all of my caregiving has been for a purpose other than making everyone else comfortable. It seems that maybe I have something to share.

    Oh, did I tell I was a caregiver, at age 14, for my toddler sister and my grandma, who was crippled with Rheumatoid Arthritis? My (now adult) sister reminded me of that, one day. I’d never even considered that part of the equation.

    That’s the thing about caregiving. It’s an automatic reaction to need, which is good. It’s not understanding what this is taking out of us that’s the problem. Awareness is the secret.

    Take care of the caregiver along with those who need care. Label your caregiving as work. Look for respite care so you can have at least a little “vacation.” Don’t let the domino effect destroy your health. Add the caregiver – you – to your list of people who need help. That is a mus in order to weather the storm.

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Published On: February 20, 2007