What It's Like to Grow Up As A Caregiver
Dr. Barry Jacobs, author of The Emotional Survival Guide for Caregivers, shares a candid look into his life as a caregiver as early as his teen years.
Dr. Barry J. Jacobs is a clinical psychologist and family therapist in Pennsylvania, who specializes in helping family caregivers.
When he was in high school, Dr. Jacobs’ family struggled with his father’s illness and ultimate death from brain cancer. This experience spurred him to become a psychologist specializing in helping family caregivers.
In 2010, Dr. Jacobs and his wife, Julia Mayer, found themselves in a different caregiver situation, this time for Dr. Jacobs’ mother and stepfather, moving them from Florida to live near their Pennsylvania home, where they cared for them for the next seven years. Dr. Jacobs’ professional and personal experiences give him a unique and informed perspective. We reached out to him by email for the following interview.
The Candid Caregiver: Barry, I know that you cared for your mother for nearly seven years and that she lived with vascular dementia and kidney disease. In the retrospective that you wrote for AARP as the one-year anniversary of her death passed, you said that caregivers shouldn’t posture as heroes or victims. I agree. Could you briefly explain this for our readers?
Dr. Barry Jacobs: Caregiving is often a hard challenge in our lives but it is not really an extraordinary one. Many if not most of us will face the prospect of caring for a loved one at some point and, if we decide to step up to that challenge, we'll then muddle forward doing the best we can. That's not heroic, really. It is being a normal, caring family member. It also doesn't make us victims because we have chosen this particular path.
In my own caregiving experience, I thought others were giving me too much credit for what I was doing. I had in the forefront of my mind all the dumb mistakes I'd made and grumpiness I'd shown while caring for my mother; that certainly didn't make me feel very heroic. I also got the sense that, by putting me on a pedestal, people were, in essence, distancing themselves from me, as if they were saying: "Keep up the great work! I'll applaud you from afar!" That meant to me that they weren't interested in stepping forward themselves to help me with the many caregiving tasks.
TCC: Your metaphor in that same piece about remembering the forest was excellent. Could you give our readers a brief rundown about why you choose this metaphor for caregiving?
Dr. Jacobs: We do many things in our lives, like build a house or earn a training certificate, for the greater purpose and desired outcome. If we dwell on the dirty details, then it will make those worthwhile endeavors seem unbearable. Instead we keep our eyes on the prize and let it pull us forward. I think of caregiving the same way — filled with pleasant and unpleasant instances but, ultimately, extremely meaningful. I want all caregivers to not lose themselves in the daily grind — the trees, I've called them — and instead see the greater purpose for their sacrifices — the grand forest.
TCC: You are a therapist whose profession is helping people with personal problems. Do you think that your education and practical training helped make you a better caregiver than an average person would be?
Dr. Jacobs: My training as a clinical psychologist has taught me about the emotional risks of caregiving, such as burnout and depression, and helps me recognize signs of those problems in others. That, however, doesn't make me qualified to observe myself with much accuracy. Just like everyone else, my emotions can run away with me and skew my judgment, thoughts, and actions. Fortunately, my wife, Julia Mayer, is also a clinical psychologist. Through my caregiving years, she was able to point out to me many times when I was, on the one hand, over-reacting or, on the other, avoiding matters I needed to address. I accepted her input because I trust her and because my training made me more inclined to realize that she was usually right.
TCC: Do you think that you coped with the sometimes traumatizing issues of providing end-of-life care better than someone who has no medical or mental health educational background would?
Dr. Jacobs: To some degree, yes. I recognized the physical and cognitive signs that my mother was dying months before her actual death and that gave me the chance to brace myself emotionally. I alerted others of her impending death so that they could see her before the end. I also knew what was going to happen on the day my mother died — the fluctuating consciousness, the loud, labored breathing, the eventual, uncanny stillness. Those changes in her therefore didn't shock me when they occurred.
There were things for which I was unprepared, though. Soon after her death, my mother turned a pale yellow that made her seem other-worldly and eerie. Her face relaxed and the wrinkles in her forehead disappeared. When I touched her there, I was suddenly jolted by visual images of kissing that smooth forehead as a small child. I was overpowered by old emotions.
TCC: I know from reading your posts that the anniversary of your mother’s death was difficult for you. How did you cope? Did you do something special on the day just to get through or were you simply very conscious of her passing?
Dr. Jacobs: In my clinical practice, I am forever advising former caregivers to create rituals, for instance, going to the grave or attending a mass, to mark the anniversaries of their loved ones' deaths. These kinds of rituals bring family members back together again to support one another and also provide a safe forum in which the expression of grief is encouraged. I have seen such rituals be of enormous value to many clients. That said, on the first anniversary of my mother's death, I failed to heed my own advice. I planned no event. I thought a lot about my mother and felt very sad but also went to work that day. For me, it has been the process of writing articles about my own caregiving experiences and my often-difficult relationship with my mother that has been my forum for the exploration and expression of my grief. Being interviewed by you is serving the same purpose for me. It’s putting me back in touch with memories and feelings and allowing me to reflect. Thank you.
Dr. Jacobs is the co-author, along with his wife, Julia L. Mayer, doctor of psychology, of the book “AARP Meditations for Caregivers: Practical, Emotional and Spiritual Support for You and Your Family,” and he is the author of “The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent.” He also is a co-editor of the ebook “Collaborative Perspectives: A Selection of CFHA’s Best Blogs From 2009-2015.”