Caregivers Stories: Dr. Elizabeth Shulman, author of “Sanctuary in the Midst of Alzheimer's"

Kimberly D. Scott, a former Video Girl, and now Podcast Practitioner interviews Dr. Elizabeth Shulman, the author of “Sanctuary in the Midst of Alzheimer's: A Ministry for Husbands and Wives Caring for a Spouse with Dementia”. They talked about their loved ones who were diagnosed with dementia and how it changed their perspective about caregiving.

Elizabeth was first exposed to Dementia when her grandmother moved in with them when she was young. At that time, she had a hard time understanding what her grandmother was going through. Like every family member who has a loved one diagnosed with dementia, this was a situation that not everyone can grasp easily and wholeheartedly. It is painful on the caregivers' end to see their loved one slowly retrograding without them being able to stop and make things work like it used to be.

When she went off to college and got married, she went on to seminary and her husband entered grad school for chemistry. After a lot of moving around, they settled in Tennessee. It was there that she started in health care chaplaincy, working in the hospital setting and then transferring over into Hospice. Her life then geared towards dementia caregiving and training for communities on how to take care of themselves.

Her clinical team often talks about being on the watch for the caregivers because as the saying goes, “Caregiving can kill the caregiver.”. Caregivers often forget to take care of themselves. This is one of the most heartbreaking cases that caregivers face. She shared an unforgettable story about a 72-year-old gentleman who was caring for his mother down in Tennessee. He was the one who was caring, feeding and changing her. Though he was doing an amazing job at taking care of his mother, most of the time he looked ragged. He did not take care of himself and ended up being diagnosed with cancer and passed away before his mom. Hearing this kind of stories and knowing how devastating it is, strengthened Elizabeth’s team to recommit themselves to not just only encouraging to have tougher conversations with caregivers about how it's not selfish to participate in self-care but also pointing out that the better we take care of ourselves the better we can provide care for other people.

Self-love and self-care are one of the main things that caregivers give the least priority. The wives, husbands, and children who become the primary caregiver become trapped into guilt, thinking that they do not deserve to get their “me time." When Elizabeth’s husband was diagnosed with late on-set paranoid schizophrenia and obsessive-compulsive disorder, the increasing responsibility of caring for an ill husband changed the roles in their marriage. And just like most of the caregivers, she temporarily lost her own sense of self to caregiving. It was not until she began her chaplain residency in a Clinical Pastoral Education (CPE) program that she placed value to her own identity as a spousal caregiver. Eventually, with the help of her supervisor, she shared her story. She was also able to listen to hundreds of husbands, wives, children and significant others tell their stories of caregiving for a loved one with Alzheimer’s or another form of dementia. Their stories and her experience, coupled with research from literature and scripture that speaks to the challenges of caregiving became the backbone of her book.
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