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When Caregiving Ends – Who are You?

Breeda Miller – Caregiver Champion

The End and The Beginning

The day arrives. Caregiving come to an end for family caregivers and a new stage of life begins.  While caring for an elderly parent or a family member with a chronic illness can be exhausting and all consuming, it can also provide a framework for a purpose-filled life.  When the cared-for loved one passes on, it can be a tremendous loss, not just in terms of grieving for the beloved, but also for the change in daily life.  Often caregivers feel like a ship who has become unmoored. Their daily purpose no longer exists and they feel lost and lonely.

The long good bye

When I cared for my mother my grief began when her cognitive abilities declined so much that the witty, clever woman who loved to discuss politics and had an opinion about everyone and everything disappeared and a frail shadow of her former self took her place in our home.  When I could no longer engage in conversations and seek her opinions or share good news in a meaningful way – I knew I had lost my mother.  Though she was still physically present and had moments of clarity, the relationship had changed.  My days were filled with schedules – medication, therapy, bathing, dressing, special meals and transportation worries.  We received tremendous support from hospice for seven months and they were wonderful.  I had no experience with end of life care and I received as much love and support as my mother did.

Hello Guilt my old friend

When my mother took her last breath, I breathed a sigh of relief. I loved her dearly, but I was totally exhausted, mentally and physically.  Then I felt guilty for feeling relieved.  I didn’t feel the grief that I had expected, and I felt guilty about that as well.  In reality, I had been grieving her loss for three years, as she steadily declined.  Though I knew her end was imminent, it was still a shock.  For months, I would look at my watch in the late afternoon and think about what I would need to prepare for her dinner or her next dose of medicine.  I still felt the tug of the caregiver leash even six months later.

Re-Entry is tough

Many caregivers, especially spouses feel this loss even more severely.  Their identity was wrapped up in being a caregiver, a role they embraced and did their best to honor.  It’s very hard to re-enter life after such an experience.  Many friends have moved on, jobs are gone and the days, while more restful can be long and exhausting.  A sense of purpose is one of the most important things that one can have in this life.  Finding that sense of purpose again after caregiving is essential.   For those that are interested in re-entering the workforce after years of caregiving, there is a non-profit organization called Path Forward.  They help caregivers (many are women who have taken time out of their career to raise children) reenter the workforce through a program similar to an internship.  You can find out more at

Finding Purpose

I am fortunate in that I have found my purpose in writing and speaking about supporting caregivers.  I began caring for my mom because I loved her, and she needed care.  I didn’t know what I didn’t know. It was a steep learning curve.  Now, I spend time learning and researching caregiving resources and sharing those with professional and family caregivers.  It is work I am passionate about and that I truly enjoy.  The best part is that I feel my mother’s presence. When I am speaking to groups and sharing a story about her, she lives on as she helps me help other caregivers.

Roselyn Carter said it so very well,

“There are four kinds of people in the world:

Those who were caregivers.

Those who are caregivers

Those who will be caregivers and

Those who will need caregivers.”

Your lessons learned

If you are a “graduate” caregiver what advice do you have for those in the thick of it?  What did you learn that you wish you had known?  I’d love to hear from you and continue this conversation.  All of us are smarter than one of us.

Breeda Miller works with organizations to support professional and family caregivers. Her self-care strategies help caregivers care better for others, reduce stress and burnout.  A professional speaker, award winning author and family caregiver, Breeda cared for her own mother for 8 years including hospice care.

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