Monday, 15 November 2021

When Caregiving Calls - A New Guide for Care

 Today it is my pleasure to introduce the very wise caregiving expert and author, Dr. Aaron Blight. I can't remember exactly where or when I first met Aaron online, but I know that I instantly recognized his original approach to caregiver support and we became fast friends and kindred spirits. I asked Aaron to describe his own caregiving journey and tell us about his new book, "When Caregiving Calls" - grab a coffee, read and enjoy! 

1) How did you become interested in caregiving? Tell us about your journey. 

 Family caregiving entered my life in early 2000, when my mother-in-law received the unexpected diagnosis of a brain tumor. After brain surgery to remove the tumor, she moved into our home, and my wife and I became official members of “the sandwich generation,” caring for our children and her mother at the same time. We cared for her mother through subsequent cancer treatments and cognitive decline, over the course of five-and-a-half years, until her death in 2005. After my mother-in-law passed away, I left my job in national healthcare policy at the U.S. Department of Health and Human Services and opened a private duty home care company. My company employed caregivers who helped aging and disabled people in their homes with activities of daily living. I also proceeded to study caregiving as a phenomenon of social science in connection with my doctoral degree. I sold my home care company in 2017 and have been focused on supporting caregivers ever since. 

2) In your book, When Caregiving Calls: Guidance as You Care for a Parent, Spouse, or Aging Relative, you talk about a theory of caregiver identity. Can you tell us about that? 

Family caregiver identity theory was developed by two applied gerontologists, Rhonda Montgomery and Karl Kosloski, as they studied family caregivers over the course of nearly three decades. The researchers discovered that family caregiving is marked by a series of role-based transitions, starting from an initial set of family relations that change over time due to changes in the caregiving context. As the care receiver’s needs become greater, the caregiver’s actions must change—and this changes the caregiver’s role identity within the relationship. I discovered Montgomery and Kosloski’s research during the literature review for my doctoral dissertation. Their work had a profound impact on me. Years after my mother-in-law had been diagnosed with cancer, and after providing home care services to so many families experiencing similar trials, the essence of the family caregiving struggle was finally explained to me. I was excited to share caregiver identity theory with the families served by my home care company. I included the theory in my book, and I continue to teach it in workshops for caregivers today. The value of the theory is in its practicality, universality, and simplicity. 

3) What advice do you offer to caregivers in your book for people who are facing a new diagnosis? How can someone prepare for the role? 

 It can be completely overwhelming to receive an initial diagnosis—and then realize how much there is to do and how unprepared you are for everything that is to come. First, breathe. Then go to work. One of the most important things a new caregiver can do is choose to adopt a learning orientation to caregiving. I’m talking here about a mindset. Family caregivers don’t start with training or education or certification that “qualifies” them for the new role. However, if you allow yourself to be taught by your loved one, by healthcare professionals, by other caregivers, by friends and family, and by your experience, you can—and you will—grow into the role. Faith in your ability to learn how to address caregiving’s challenges will accelerate your growth as a caregiver. 

4) What do you think is the toughest challenge that caregivers face today? 

COVID-19 has increased all of caregiving’s challenges. Caregiving is hard enough, but COVID has made it harder. In today’s environment, caregivers must worry about and protect against transmission of COVID-19 to their vulnerable loved ones. In addition, many of the measures that have been taken to protect us from COVID-19 have simultaneously increased the risks of loneliness and social isolation, especially among the elderly. We’ve seen long-term care facilities shut their doors to visitors, depriving families of the opportunity to see and touch their loved ones. Caregivers are less likely to engage respite care due to COVID-19 related concerns, which means they get less relief. The COVID environment has clearly created more stress for both caregivers and care receivers alike. 

5) You owned a home care company - what advice do you have for families who are considering being a paid caregiver into their home? What are the pitfalls and the advantages of using home care? 

Home care can be an excellent alternative to facility-based care, but the idea of inviting people you don’t know into your loved one’s home can be daunting. You want and need an agency you can trust. When Caregiving Calls: Guidance as You Care for a Parent, Spouse, or Aging Relative, contains tips for selecting the best in-home care agency—which includes asking several questions to determine if an agency is reputable and able to meet the needs of your loved one. Cost is a significant consideration. The cost of home care is usually calculated on an hourly rate, making the total cost directly tied to utilization. When an individual needs only a limited number of hours of care per day or per week, home care can be much more affordable than facility-based care. However, when intensive supports are required and the individual needs as much as 24/7 care, home care is likely to become costlier than facility care. Because utilization drives your cost, more hours of service will lead to higher overall cost. 

6) What do you think caregivers learn "on the job" that could benefit society at large? In other words, what qualities do we develop that others may not? 

Donna, in your book, The Four Walls of My Freedom: Lessons I’ve Learned from a Life of Caregiving, you wrote, “a life that we value and have reason to value is one that has at its heart caring and belonging.” I love that statement! Caregivers demonstrate and develop an array of the noblest human qualities—dependability, loyalty, kindness, selflessness, empathy, compassion, and love, to name a few. Today’s society is laden with so much division and strife that I actually wrote a blog post about how caregiving exemplifies the healing that our society obviously needs. Imagine what the world would be like if we collectively committed ourselves to caring, giving, and receiving across divisions of race, gender, politics, age, COVID-19 status, and so on, simply because we are all human beings. A caregiver looks beyond the scales of social identity to see and to serve the real person in front of them, which is a great lesson on belonging to our larger society.

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