Dementia caregiving: Staying in the ‘okay’ part

Confession: I am a caregiver, and I have no idea what I’m doing.

In the blink of an eye, I have shifted from a career as national vice president of sales to suddenly becoming the sole caregiver for my mother, who lives nearly 3,000 miles away. While I’m fortunate she doesn’t need daily care just yet, the travel and time spent away from my home, friends and family takes a toll.

My mother has been silently suffering from dementia for the past few years, I learned, as I began to spend more time with her. And she’s aware that she’s slowly slipping, but simply refuses to acknowledge or understand why, because of her religious belief in faith healing. Any type of disease — let alone the dementia that has her in its suffocating grip — is the topic we never talk about, the proverbial elephant in the room. For her, to acknowledge dementia would be to admit that it’s real and ultimately, to believe that God’s plan has been altered.

This was the religion of my childhood. I grew up in the house on the island where my mother still lives, attended Sunday School at the church where my mother still goes. Life in this small island community isn’t much different from how it was forty some-odd years ago before I left the church and my mother for another coast three thousand miles away.

My own journey was not without darkness and depression. Successful career aside, I struggled with my own demons, finally surrendering to sobriety after many years. My life changed dramatically: relationships were rebuilt, promotions achieved, a supportive and caring new husband came into the picture. The short trips I took back east to visit my parents continued. Not too long ago, I was faced with the startling reality that my mother was going to need more help. And, as the only child, I bore that responsibility. So I stepped down from my twenty-five-plus year executive career and stepped up to challenge of caregiving.

For months, the task seemed daunting. Difficult. Depressing. Discouraging. Draining. It was easy to be resentful; much harder to be compassionate. Yet a funny thing happened: the more time I spent with my mother, the more I realized how much we could both learn together. Rather than remain detached and angry, I reached out to other caregivers. Through online support groups, I discovered others who felt as I did. Instead of isolation, I reconnected with the community of my youth and through volunteering, became involved with local senior programs. As I peeled off the layers of dismay, I discovered patience, love and true empathy for my mother and others suffering from dementia.

“Try to understand what she’s going through,” said a long-time friend who lost her mother to Alzheimer’s. The simplicity of this wise advice was astounding. I put myself in mom’s shoes and walked a thousand miles. I saw that the corporate knowledge I’d collected over the decades of my working life could actually be applied to many of the situations I encountered in my caregiving life: practicing teamwork, multitasking, celebrating accomplishments, achieving goals. I ran this new life like a business, but with a newfound patience. And with a heart.

As the seasons changed, so did my outlook. Winter turned to spring: bleakness gave way to renewal. We placed mom’s husband in an Alzheimer’s home; I helped her live on her own again. The entire summer I spent with her became more about celebrating the glory of the outdoors than my initial plan to observe the progression of her dementia. Together, we took walks along the beach, picked bouquets of violets and daisies, made blueberry pies. The glory of autumn in New England brought foliage viewing drives and homemade applesauce from our backyard orchard. I returned for the month of December, and we decorated the house, baked Christmas cookies for the neighbors and spent our first Christmas together in more than thirty years.

My life as a caregiver is not perfect. My overachieving “Type A” personality struggles with being unable to commit to anything but being there for my parents. I am never sure which side of the country I’ll find myself in. So I opt for volunteering over a paid job. Embrace the time I am on the left coast with my ever-so-supportive husband, pets and friends. Run short races instead of marathons.

Along the way in this new journey, I am learning to accept things — and people — the way they are. I am trying to understand, not to be understood. I’ve replaced problems with solutions. I give back, offering my own caregiving tips and lessons learned to other caregivers. I remind myself of my husband’s wise words, when I told him I was half-stressed, half-okay: “Stay in the okay.” And I remember to cherish, not dread, time with my mother, who, it turns out, is really not so different than I am.

For more tips on caregiving for people with dementia and Alzheimer’s check out these informative caregiving sites and blogs:

  • online caregiver support
  • Helpful tips and hints for caregivers of elderly
  • caregiving stories and tips for caregivers of dementia patients
  • Dementia written by caregivers sharing their experience
  • information on home health care services for elderly
  • advice and encouragement for caregivers of dementia patients
Written by Amie

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  1. Thanks for sharing this wonderful read. Number of people today are suffering from dementia, mostly elders. Caregivers are specially trained to handle the daily routine of the dementia patient. Today, a number of organizations are giving facilities of dementia and Alzheimer’s care along with the facility of luxury living. Dementia care near Morris County NJ is one of the well established organization which helps in the easy recovery of the dementia patient along with the other activities like brain training.

  2. I agree with Melissa Benanti but i dont work at the nursing home i work in a home its a little better no liffing yet?

    • My father lives with me. I am grateful for a wonderful aide who helps!

  3. Caregiving is a learn as you go role. Nothing can prepare you for the things are learn and navigate out of love. You will stop at nothing to help your loved one.

  4. What a heartfelt, honest article. I love it and thank you for writing it.


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