One caregiver’s journey to find a new purpose after losing her husband to Alzheimer’s disease.

With one last breath, my life changed. I had been a 24/7 caregiver to my husband of over 48 years, and in a moment, I became a person without a cause. While my days had been consumed, leaving no time for myself, suddenly there was no responsibility or accountability to anyone or anything. A gradual beginning, an abrupt end. What does one do with the freedom that comes from losing one’s purpose?

The aftermath

He passed November 17 from complications due to Alzheimer’s disease; the last three weeks moved like a train wreck. It happened so quickly I was left trying to wrap my mind around it. The holidays were a blur. I felt so alone and misunderstood. After several months, my mind still spiraled — no longer a caregiver, no longer a wife.

A year earlier, I tearfully shared with my Alzheimer’s caregiver support group: I’d lost me. Would I ever find the real me again? I wasn’t sure who I was, where I was or if I’d reclaim my past life. The years of caregiving with Alzheimer’s were like an out-of-body experience and upon my husband’s death, I was jolted back to reality. Caregiving consumes your identity. Unconditionally putting another first, I had become programmed. Being able to put myself first was strange. It was difficult to accept that I had my “me time” back.

Rediscovery

A dear friend asked me to spend a week during the Easter holiday at her lake house without any distractions or drama. It was a wonderful gift. Beautiful sunrises and sunsets, birds singing, naps on the veranda, boat rides, awesome food, laughter and conversations. I breathed in the fresh springtime air, emptied my mind and felt renewed, knowing there was a purpose yet unknown to me. My future was a blank canvas, a time to redefine and reorient my life. It’s up to each of us to decide what we do with this newfound freedom

A new identity

My husband would cry out so often, “Why me?” He hoped that there would be a cure

to the devastating disease that took over his brain, his body, our life. After his passing, I too questioned, “Why us?” What could I do with all the knowledge I had as caregiver to someone with Alzheimer’s? Often I wanted only to squeeze my eyes shut and pretend that journey hadn’t happened. Yet, it didn’t take long for my purpose to unfold after my lake retreat.

Several of my support group friends were finding their lives in crisis, and I recognized how close they were to going over the edge, a place I’d been. I thought my journey with Alzheimer’s had ended, but I discovered I am able to give myself and my time to be supportive of their needs. I get it. And they know I get it. It has become my mission.

I hold hands and listen to fears. I spend time with loved ones so caregivers can get a haircut, a much deserved massage or meet a friend for lunch. I support them while their loved ones are in the emergency room, surgery or the ICU. I am there with them while their loved ones are upon their final days. My newfound purpose is to be an advocate for Alzheimer’s patients and their caregivers, to work behind the scenes and to help create policies that give caregivers better access to emotional and medical support.

There is a Stanford University study that focuses on the effects of family caregiving for Alzheimer’s disease and dementia patients. Researchers discovered that Alzheimer’s caregivers have a 63 percent higher mortality rate than non-caregivers. In fact, 40 percent of Alzheimer’s caregivers die from stress-related disorders before the patient dies.

I went through caregiving and came out on the other side, fully in the driver’s seat of my own life and as a different person. Picking up the pieces meant taking risks. Just as being a caregiver to my husband with Alzheimer’s wasn’t in the plan, neither was this new role I’ve undertaken. But applying my life experience and helping others has become my purpose, the new me.

Alzheimer’s facts

  • Alzheimer’s disease is the 6th-leading cause of death in the United States and the 5th-leading cause of death for those age 65 and older.
  • In 2013, more than 84,000 Americans died from Alzheimer’s. In 2016, an estimated 700,000 people with Alzheimer’s will die from complications of the disease.
  • Alzheimer’s is the only disease among the top 10 causes of death in America that cannot be prevented, cured or even slowed.

Source: The Alzheimer’s Association

Joene Nelson Werner currently resides in Denton, TX. After retiring from a career in telecommunications, her love of people helps encourage her to focus on supporting others in their caregiving role with Alzheimer’s disease. As a recent widow to a husband who passed from Alzheimer’s, she’s found her passion in assisting those who were in her support group as their loved ones’ disease progresses.

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