The Hard Truth About What It's Like to Be a Caregiver

There is that moment when your life changes drastically, for better or worse. Mine took place 10 years ago on a sticky vinyl seat in the lobby of a Virginia medical center. My then 61-year-old husband gripped my hand and tried to keep a smile while he informed me that what we thought had been a stroke turned out to be a malignant brain tumor. It took an intern to finally make this accurate diagnosis.

A week later, my husband underwent an eight-hour brain surgery. I underwent eight hours of waiting anxiously with family members, while the world around me revolved at its normal pace, knowing mine was altered forever.

Surgery was followed by seven weeks of radiation. Nothing tests a marriage more than driving every morning in freeway traffic for an hour and a half hour to receive a 15-minute radiation treatment. While at the wheel, I took his driving commands, sometimes harsh, in stride. I wasn’t the one with the tumor. But I also recruited friends to take a shift, realizing these stressful trips were a steady strain on me — his caregiver who needed to take charge of her own self-care.

Life returned to a “new” normal for the next four years. From the tap, tap of my husband’s cane, I knew where he was in the house. What I didn’t know was how much his health was going to worsen and what hardships the future would bring.

Our calendar became marked with various types of scans, neurosurgeon appointments and frequent hospital stays. Going out to lunch often meant eating at the hospital cafeteria, which surprisingly serves good sushi. But the atmosphere leaves much to be desired.

I took on all the physical responsibilities of our home. I learned to restart the garbage disposal, reconnect the toilet and re-ignite the water heater. These are simple tasks that both spouses should know, by the way. In marriages, chores are usually divided, with each partner doing what they do best. And my husband was the best handyman around.

About eight years ago, when walking with a cane became too difficult, he started using a walker. After numerous falls, which put us on a first-name basis with our local paramedics, he reluctantly resorted to a wheelchair. The doors were removed from various rooms in our home to accommodate his passage. To this day, the doorways are scuffed and scratched, a reminder that my handyman husband is no longer present.

Around this time, my then-spry 90-year-old mother moved in with us. Throughout the years, she developed dementia and I found myself caring for two loved ones.

Today, after my husband has had several recent seizures and serious blood infections, we use a Hoyer lift to get him from the bed to his wheelchair. Swinging across our room would have been fun in our earlier days. Now I see the fear in his eyes. And I have to be honest. When I’m fed up or feeling done with the whole caregiving business, I have these dark moments when I feel like dropping him on the floor instead of into his wheelchair.

I empty his catheter bag. I inject him with a weekly vitamin B shot. I manage his daily pills. I never imagined this life when we took our wedding vows 45 years ago. In our older years, I pictured us traveling the world together, enjoying our retirement. I’m often envious of friends who are living the life I saw for myself.

Instead of sipping wine at a Parisian cafe, my typical day consists of meeting the demands of another person. I wake up at 6:30 a.m. to my husband whispering “Café au lait?” I roll over for a few seconds, gather my strength and prepare our coffee, watching the sky turn from pink to blue.

A professional helper arrives at 9 a.m. I then have four hours in which to grocery shop, walk the dog and do simple things like getting a haircut, see my doctor and visit a bookstore. I run all my errands with my eye on the clock.

After our caregiver leaves, I get more than enough fitness steps, as I repeatedly fill water glasses, make meals and do anything he asks, including searching for the remote control which always seems to wander off the nightstand.

It took me many years to ask for help. But I’ve since learned, you cannot do this alone. As Gail Sheehy says in her book, Passages in Caregiving, “The secret of caregiving success took me years to discover. Quite simply, we cannot do it alone. We must create a support circle — a circle of care.” Once I began asking for help, I realized friends and family were simply waiting for me to acknowledge that I needed them.

And I was painfully aware that I did need help.

Dr. Steve Froehlich, Director of Behavioral Health for Los Angeles County Fire Fighters Local 1014, says, “As a caregiver, self-awareness is very important. You must be accepting of yourself and your feelings. You’re going to run the whole gamut of emotions, from joy to anger to sadness and you have to give yourself a break and have self-compassion. This allows you to be a better caregiver and present in a healthy way.”

One of the books that is currently helping me stay healthy on this journey is Ann Brenoff’s Caregivers are Mad as Hell: Rants from the Wife of the Very Sick Man in Room 5029. She doesn’t sugarcoat the experience. As Brenoff states: “I will admit that even his 12-day hospital stay felt like a mini-vacation from the constant caregiving I had been providing for about a year.”

When I look back at my husband’s diagnosis and surgery 11 years ago, I realize since then, I’ve been living one day at a time.

There are days I tell myself I’ve had enough. There are days we laugh at silly things my 72-year-old husband says when his brain gets jumbled. And there are days when I am riddled with guilt about leaving the house and having fun. Friends have told me they could never be a caregiver. I never thought I could either. You don’t really know what you are capable of handling until you are living in my shoes, with a loved one in decline.

If you're a caregiver, consider joining the AARP Family Caregivers Discussion Group, a closed Facebook group for caregivers.

Have any of you ever been a caregiver? How did it go? Let us know in the comments below.