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When We Overlook the Caregiver Who Needs Care, Too

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Throughout my father’s journey with cancer and its aftermath, we would often tell my mother, “You need to take care of yourself! Go get your hair done! Better yet, get your nails done!” And then we would all return to our daily lives.

Oh, the irony in telling the caregiver to take care of themselves.

After my family’s journey with cancer I can understand why sometimes caregivers die first, and after reading my story I bet you will understand why as well.

The last three years of my father’s life were a horrific journey. He went from a completely self-sufficient man to a patient who was bedridden and unable to perform basic tasks such as using the bathroom or bathing. My father fought with every ounce of his being to survive and my mother was right by his side every step of the way. My mother became an extension of my father’s heartbeat.

My mother, who was my father’s caregiver experienced extreme exhaustion and frustration. Many times I would watch my mother care for my father in complete admiration. Where did she find the strength and courage? 

I watched my mother selflessly care for my father. My mother cried daily and worried nonstop. After my father fell one night using the bathroom, my mother spent endless sleepless nights fearful that my very weak father would fall again and this time break a hip. Her days would be spent caring for my very sick, frail father. Although he had hospice care the last four months of his life, that was only for a few hours during the week.

Despite everything I have said, if you tell her she’s the reason my father lived as long as he did, she will look at you with tears in her eyes and tell you her love couldn’t save him. She will tell you she would have given her own life for my father to be healthy and live. She will weep that her soulmate is gone despite her best efforts to save him. And then she will tell you how she lost her patience and grew tired towards the end. After all tireless efforts, she now has caregiver guilt.

As their oldest child, I often wonder if I did everything to properly assist? I was privy to their life insurance plans and investments — should I have encouraged them to invest in a long-term care policy? I’m the Director of Events at an insurance brokerage firm — did I fail my parents? Should I have taken family medical leave during the last few weeks of my father’s life and helped more frequently?

Caregiving has a tremendous impact others. Their actions are the definition of strength and courage while surrounded by heartbreak and human suffering.  I watched my mother transform into a real-life superhero. She put my father’s needs above her own; she cared for my father selflessly for seven years. Her actions were a reminder to our family that she was there and my father was never alone. 

I think we often overlook the caregiver and tend to think they are mechanical. Maybe it’s our hectic schedules and tendency to procrastinate; maybe it’s our fear of the unknown. Or maybe it’s because our caregivers are the most selfless group of individuals on the planet and are acting out of pure unconditional love. 

Caregivers are the definition of human bravery and wisdom during our darkest moments. 

After seven years of watching both my parents endure endless pain and suffering, I decided to compose a list of suggestions to help care for the caregiver. 

1. Visit them! Don’t stay away because you are fearful of the what ifs. The entire family never forgets the people who continue to visit despite how bleak the patient’s health is.

2. Keep all lines of communication open. The life of a caregiver is not easy.  They need someone to confide in. And if you’re that person, just listen. 

3. Remind the caregiver to stay up-to-date with medical appointments for themselves. Too often the caregiver is too exhausted to take care of herself/himself and will put off their own medical needs. My mom endured a perforated colon and hernia surgery during my father’s illness. 

4. Allow the caregiver to let go of some responsibilities. Offer to take the patient to some doctor’s appointments. If the situation is anything like my parents, there were frequent doctor appointments. This will give the caregiver a break and help the patient tremendously.

5. Send them flowers. Who doesn’t like flowers? A little sunshine goes a long way.

Follow this journey on Love is Infinite.

The Mighty is asking the following: What is the best advice your mom gave you while growing up with a disease, disability or mental illness? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 4, 2016
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