Alzheimer’s disease was something that Diane Currie had only heard about in passing. She didn’t need to have any real knowledge about the disease and, like most people, she never thought it would affect her family.

That was until in March, 2002, when Currie, whose mother, Mildred, was diagnosed with the disease, was propelled into not only having to learn all she could about Alzheimer’s, but take on the responsibility as her mother’s primary caregiver.

“I was ill-prepared, ill-equipped and completely taken off guard by a disease that hit my mother like a bullet train,” Currie said, noting with astonishment in how one day, “we are ordinary people doing our jobs, raising our families and fretting over the mortgage or the kids,” and then, the next day, “with no more warning than a doctor’s diagnosis, we are recruited, without asking, into a job for which we have no preparation and facing sudden downward changes in our lives that we cannot predict.”

Currie had the opportunity to share her first-hand experience in journeying with a loved one with Alzheimer’s disease during the annual “Now and at the Hour of Our Death,” conference held March 12 on the campus of St. John of God Community Services, Westville Grove.

The conference, which brought together 84 clergy, religious and lay persons from the Dioceses of Camden and Trenton who are involved in ministries to the sick and dying, was co-sponsored by Via Lucis – Samaritan Hospice’s Ministry for Catholic Patients and Families, in conjunction with the Trenton Diocesan Office of Pastoral Care and the Camden Diocesan Office of Lifelong Faith Formation.

This year’s conference theme was “End of Life Care for Children and Adults with Dementia and Developmental Disabilities” and was specifically chosen in recognition of the fact that “caring for a loved one at the end of life can be especially challenging when he or she is also coping with an intellectual or developmental disability,” said Carol Paprocki, public relations manager for Samaritan Hospice.

“Finding ways to comfort body and spirit presents unique opportunities for family caregivers, healthcare professionals and faith communities to reach out in love,” said Paprocki. “It was Samaritan’s goal to help participants, whether they be healthcare, pastoral or family caregivers, gain insights, inspiration and support in their ministries to special populations.”

In addition to Currie, the daylong conference featured other related topics such as: “The Religious and Ethical Considerations of Caring for Children and Adults with Dementia or Developmental Disabilities” by Marie A. Conn, Ph.D., professor of religious studies at Chestnut Hill College, Chestnut Hill, Pa., and Patrick McCauley, Ph.D., assistant professor of philosophy at Chestnut Hill, and “Research/Reality: Transitioning into the Caregiving Role for a Family Member with Alzheimer’s Disease or a Related Dementia” by Kathleen E. Czekanski, Ph.D., RN, director of the Graduate Nursing and RN to BSN programs at La Salle University, Philadelphia.

Czekanski, who is a resident of Mount Laurel and member of St. Isaac Jogues Parish, Marlton, presented her dissertation research on the experience of transitioning into the care-giving role for a family member with Alzheimer’s disease. She shared the thoughts of a sample of caregivers as they described their challenges of receiving a diagnosis for their loved ones, their shifting roles and relationships, and in seeking knowledge and support for their caregiving role.

Czekanski also shared the challenges these caregivers spoke about as they planned for the future health care needs of their loved ones. The need for early diagnosis was discussed as a means to facilitate patient and family planning early in the course of the disease and the need to consider the preferences of patients and families, the stages of dementia, and risks/benefits of any proposed courses of action.

Closing out the day was a multidisciplinary panel discussion led by the day’s presenters in addition to speakers: Marie Caruso, a member of Sacred Heart Parish, Mount Holly, and licensed marriage and family therapist and a board certified licensed clinical social worker; Paula Froio, vice president of the Melissa Froio Foundation, and Dr. Stephen Goldfine, MD., full-time chief medical officer for Samaritan Hospice.

Among the questions the panel addressed were on special considerations for administering the Sacrament of Anointing of the Sick, Reconciliation and the Eucharist to children and adults with developmental and intellectual disabilities; discussing effective ways of spiritually supporting children and adolescents with disabilities, and ways in which caregivers, pastoral professionals or volunteers include a person with developmental or cognitive disabilities in their end-of-life planning or assisting them with the planning of their own funeral or memorial service.

Soon after her mother’s diagnosis, Currie, who works in the finance department of the Trenton Diocesan Pastoral Center, began spending much of her time in libraries, surfing the web and making phone calls to organizations such as the Alzheimer’s association, researching the disease.

While on one hand she was pleased to acquire a lot of medical and scientific information, on the other, she was disappointed not to find too many resources in the way of personal stories and experiences of other caregivers.

It was that finding that led her to begin keeping a diary of journal entries, which then evolved into a book, “Before My Eyes: A Daughter’s Personal Journey with Her Mother into Alzheimer’s Disease.”

Currie hopes that the book, which was published soon after her mother’s death in March of last year, could be a resource for helping other caregivers in similar circumstances.

“I had the honor of becoming my mother’s voice when she could not speak,” and through the book and speaking engagements that she has attended in the past year, “I will continue to be the voice for thousands of caregivers who also walk this painful journey,” said Currie. “I promised my mother this on her deathbed and I plan to honor that promise.”

For conference participants, the information presented at the daylong conference resonated in many and various ways.

Anna Esposito, a member of St. Rose of Lima Parish, Freehold, said not only did she pick up a number of new ideas that could help in her work as chaplain at Bayshore Community Hospital, Holmdel, on a personal level she was especially appreciative to hear Currie’s presentation, given that she has a 91-year-old mother who has dementia.

Though Esposito’s sister is their mother’s primary caregiver, Esposito said “Diane’s presentation gave me new insight on the whole situation and how I could be more helpful.”

“It’s true what Diane said,” said Esposito. “No one is prepared to receive an Alzheimer’s diagnosis. Then you are given the task of being a caregiver and there’s no manual on how to do it. You might make many mistakes, but you definitely learn as you go along.”