California Forum

The cry of caregivers

They shared their private hopes. At a caregivers gathering in Fresno, I asked participants to write a special bucket list: their personal archive of things to do before it’s too late. Few talked about themselves, instead they spoke of “they” – a list of dreams for themselves and the people they care for. For a moment they were granted permission to dream as they revealed the cry of caregivers.

“I dream of taking my parents to the beach and walking in the sand. They both use walkers (and can’t walk far). They used to love going to the ocean.” – Laverne, who is the caregiver for her parents.

They rarely ask for things for themselves. The nature of caregivers is about giving, not receiving. They perform selfless, not selfish, acts. I’m inspired by their dreams.

“Take my aunt out dancing – she loves to dance but only gets to do it at home.” – Tracy

Their lists celebrated life, balancing on a thin line between regret and hope. None were self-centered or materialistic. No one wasted a wish on sky-diving. Most acts were simple, reminding us of the everyday life caregivers and the elderly long for.

“Go to Superior Dairy to have ice cream with my sister.” – Stella

Their voices were gentle, like the touch of someone who takes care of others. Their stories have the power to capture and convey simple hopes.

“Travel to the coast. My husband is losing his sight, so we’ll not be able to see the ocean (soon).” – Shirley

Many dreamed of things they wanted to do before it was too late. I was struck by the frequent use of the word “we” – caregivers often speak in plurals. The lives of caregivers and those in need are intricately interwoven and intertwined. When one loses their sight, they both do.

“Take dad to Disneyland with family. He took us when we first came to America.” – Hadassah

They dream in stories, a memoir written in a few words. The backstory is a wish to go to Disneyland. But beyond just the travel, the family wants to step back into history and understand the power of a moment in the life of a family. Stories allow us to imagine ourselves in the context of history. Generations relive an event and are given the opportunity to see themselves in the timeline of a family legacy.

“Peace among all family members.” – Geri

Too often, caregivers aren’t allowed to show emotions and speak freely. Day after day, they live in the demanding world of giving care, while others (often family members) drop in and visit – and leave behind their unwelcomed opinions and recommendations. Like all humans, caregivers experience resentment, anger and frustration.

They may feel unacknowledged and not respected. They may want to scream out and demand the family act like a caring family. But often they can’t, and we only hear their cry if we listen closely when we ask about their dreams and their simple but deeply emotional request for family peace.

“Restore my dad’s 1955 classic Chevy pickup.” – Elaine

A dream remains a secret until it’s shared, then it has the potential to be real. Too often caregivers remain silent, too modest to make a list that family and friends can contribute to. If others don’t know your dreams, how can they help?

“He was a carpenter – I dream of building a cabinet together.” – Kim

Great stories are built around simple acts, characters engaging in a project, a cause, a crusade that grows and quickly evolves into something greater. A novel could be written, beginning with a simple wish to build a cabinet together and the final act of life between father and child.

“To be able to go out for dinner without the worry of handling the walker, stairs, etc.… like we used to.” – Harriet

Not all dreams are complicated. Sometimes caregivers cry out for just a little help. We can rally around them, even if for one evening. Helping hands may be all that’s needed for both the one in need and the caregiver to become king or queen for a day.

“Visit my relatives back East before it is too late. There is dementia in my family and I fear that I may be in the first stages of that disease.” – Richard

When the end approaches, we’re granted a unique vantage point: We understand the value of life before it’s too late. The act of reconnecting, a final journey of life to create memories so we do not die alone. Time transforms into a new force when we see the finish line, it alters our dreams.

“Give my mother something to laugh about each day.” – Jan

“I wish people understood my feelings.” – Susan

“Freedom from guilt and fear.” – Bill

I believe we can grant these wishes, make the invisible visible, the unspoken heard. For a day, I heard a group of caregivers who had the courage to share their hopes. The ordinary became extraordinary in their dreams. We can listen. We can act. We can make this a wonderful world.