As new Florida retirees in 1998, Joyce Sheldon and her husband were looking forward to a carefree lifestyle. But the words “six months to live” soon changed everything. When he was diagnosed with a terminal illness, Sheldon found herself facing the physical, emotional and spiritual challenges of being a caregiver. Her personal experiences eventually inspired her to nurture the well-being of others devoted to caregiving.

Today, Sheldon is a caregiver advocate and author of the book From Fear to Faith, A Caregiver’s Journey.  She serves as keynote speaker, conference facilitator and retreat leader for hospice and home care agencies across the country. Natural Awakenings spoke with her about the role of caregiver.

Were you prepared for the difficult challenges of caregiving and what did you learn?

There is truly no way to prepare to be a caregiver. The challenges arise so unexpectedly.  Immediately one becomes a nurse, a social worker, a chaplain. My husband turned to me for spiritual strength and emotional counseling when in reality, I needed that for myself.  I was unsure of myself in ministering to his physical needs, but learned a sense of humor is a basis prerequisite for all caregivers. One cannot survive without it. I also discovered that if I could come from a place of love, always tending to his needs with a spirit of love, I could not make a mistake.

I thought my husband’s terminal illness was “all about him,” but I learned the process of dying is, indeed, a family affair. I learned about family dynamics and the different ways in which our seven children dealt with the diagnosis and their father’s deteriorating condition.

Faith was also a key component to the success of this journey.  Each morning, I would state my intentions for the day, even if they were as simple as “I will live in the moment,” or “Every thought and word today will be filled with compassion.” Those intentions provided guidelines for me because the physical loss, day by day, was too difficult to handle otherwise.

I learned to be forgiving of myself each and every day for my shortcomings and lapses of faith. It was necessary, as well, to be forgiving of my husband. He didn’t choose to be ill, and yet it is normal for the caregiver to harbor some resentment, disappointment and abandonment when a spouse, in particular, has caused their dreams to vanish under the cloud of disability, financial strain, emotional and spiritual challenges, and the unfathomable acceptance of death as inevitable.

I learned to live in the moment, not grieving for the past and not dreading the future - not giving any power to the imagination of  “what if’s.”  No one can predict the future, so living one day at a time - one moment at a time - was a good plan.

What are the five “cities of transition” people move through during a time of loss? 

The 5 Cities are Disbelief, Despair, Acceptance, Farewell and Triumph.  When the doctor told us my husband had six months to live, I fell into the City of Disbelief. I felt the air literally leave my lungs and I grabbed my chest, feeling as though it was I who would die at any moment. I lived in that city for several weeks unable to process the words. They were too huge, too unbelievable.  Looking back, it is important to live in that city for awhile. It gives the body, mind and spirit time to recover from the shock of the diagnosis and time to create an inward plan for the outward journey.

The City of Despair is equally as cold and lonely; however, this is where one cries out for mercy, understanding, and allows the spirit to express the emotions. The City of Acceptance is warm and golden because we have given up the fight, so to speak.  When all the tests and procedures to help save my husband were completed, we realized our energies would be better spent on living with what we had rather than longing for what we didn’t have. We didn’t just give up, we simply re-directed our energies to the present moment, acknowledging the gifts we saw all around us.

The City of Farewell is the fourth city. With our parents, we often see a farewell to their ability to care for themselves. If we are caring for someone who is handicapped, it’s a farewell to the life we envisioned for them - a healthy, vibrant life. Once we acknowledge that we are in the City of Farewell we can bend and sway with the changes rather than fighting them. The City of Triumph is indistinguishable at first. The caregiver often cannot imagine any type of triumph. In reality, each day of caregiving is a triumph; each little success, each stepping stone, an exercise in spiritual growth. It takes paying attention or awareness of what is, and not a longing for what might have been.

Caregivers of any kind - for the sick, the elderly or the dying - all face intense physical and mental strife and exhaustion. What advice do you offer to them to best take care of themselves?

There are literally hundreds of websites giving advice to caregivers - take a walk, spend time outside the home, etc. These are all good pieces of advice. However, it is my belief, and I say this from experience, that the spiritual and emotional well-being of the caregiver is the most important. Nurturing one’s belief that caregiving is a spiritual path and remaining awake and aware of the magnitude of the situation, all played a very important part in my success as a caregiver.  Clinging to the belief that “this is the moment, the only moment in time of which we are certain,” is what sustained me.  When I felt I could not answer one more question, lift him one more time, provide comfort one more time, I remembered my commitment to love and care for him, in good times and bad. I lived only for the moment because I knew the time would come when he would no longer be with me.

In terms of professional caregivers in the institutional setting, how can they be best trained to compassionately and effectively care for their patients?

Professional staff who serve the sick, elderly, handicapped, and especially those at the end of life, are a certain breed of compassionate caregivers, but their cup can run empty.  To fill their cups, I suggest practicing a “disassociation” from the grief of the families.

Often it is difficult to remain distanced from the emotions of the families. I would say to be effective in their position, to best serve the needs of the patients and their families, it is important to remain balanced - to be aware of the danger of being overly involved - and to find the courage to step back and become a little selfish about one’s own spiritual and emotional welfare.  It’s all about paying attention to our own needs.

Joyce Sheldon is Community Liaison for Ahlara International in Mooresville and holds workshops there for hospice staff, volunteers, caregivers and those suffering from grief and loss. Info: AhlaraInternational.com, MyJoyToday.com or [email protected].