Change Your Perspective, Change Your Life
by Kay Adams, LCSW,
PAC Mentor and Certified Independent Consultant and Trainer
As a PAC Certified Independent Consultant and Trainer, I strive every day to educate and support care partners about dementia in the best way I can, thereby improving the lives of people living with dementia in the process. My goal is to empower care partners to effectively face caregiving challenges with a sense of confident awareness. Some days my job seems fairly simple and straight-forward, but other days the issues I come up against with families are deep and complex—with no easy answers or obvious solutions in sight.
Over the years, one of the Ah Has that I have gleaned in terms of providing care for the care partner, is the powerful role that perspective plays in the caregiving experience. When it comes to perspective—what we see depends not only what we look AT but where we look FROM. I often challenge care partners to consider the lens through which they view their caregiving situations. The lens is important because our personal vantage points and belief systems influence our perceptions and experiences of reality when it comes to caring for someone living with dementia. What we know and understand about dementia and how it impacts the person that we're caring for matters in terms of how well we cope (or not) as care partners, and in the quality of care we are able to provide. As the writer Ram Das so aptly put it: “The thing about perspective is: Something happens. It means nothing. We make up a story about what it means based on what we feel. This story becomes our truth.”
I have discovered that one of the biggest stressors for many care partners regarding perspective is that of naming the elephant in the room. They frequently don’t want to tell anyone that the person they are caring for has brain changes. They don’t want to risk stigmatizing their loved one’s reputation or their own, and often fear the social rejection that they perceive may follow if they admit to others that their family member has dementia. They make up a story based on how they feel about their situation, and that subsequently becomes their truth, which may have serious consequences down the road.
I have been consulting with a family in which the husband, Bob, has early stage Alzheimers disease. Bob has been a very prominent member of his community for decades, and his wife Sally, has admittedly profited from Bob’s position in society because of their marriage. Despite being retired, people still constantly seek Bob out as an expert consultant in his field, but he is now struggling to meet the demands of his clients due to his progressing dementia, and Sally is conflicted about what to do. She recently told me: “I am guilty of talking out of both sides of my mouth. On the one hand, I want Bob to come out about his dementia so we can each get support and quit living a lie, because we are so isolated now. But at the same time, I also benefit from his elevated status and connections, and once the cat’s out of the bag about Bob’s illness, our life will never be the same again, and I don’t know if I am strong enough to face that.”
It’s not hard to understand Bob and Sally’s dilemma, as it is a common concern that families impacted by dementia must address at some point. The problem with avoiding naming the elephant in the room and speaking the truth about what is transpiring, is the overall lack of assistance that people receive from family and friends when they need it most, as well as the increased caregiver stress that occurs when keeping the secret becomes more important than seeking the help and resources you desperately need.
Part of the ongoing challenge that care partners like Sally face is how to change and adapt their perceptions and expectations of the person they are caring for as the brain changes progress. Realistically adjusting our perceptions over time is a critical skill in terms of successfully managing our long-term caregiving stressors. In her book, Loving someone Who has Dementia: How to Find Hope while Coping with Stress and Grief, Pauline Boss suggests that care partners may be tempted to think about the person living with dementia as already gone from their life, or deny that anything is wrong. Boss suggests that it is better for care partners to learn to tolerate ambiguity and to have faith that things will turn out, even if we can’t always understand how in the moment. As Viktor Frankl once said: “When we are no longer able to change a situation, we are challenged to change ourselves.” This sage advice applies well to care partners who are invested in staying as healthy and effective as possible, by changing the only thing they realistically have control over when dealing with dementia—themselves.
During a recent consultation session, Sally disclosed to me that she doesn’t want to give up hope about what the future holds for her husband, but she now realizes that she needs to focus on herself, and not just on Bob in order to survive and thrive for the long haul ahead. As Sally so thoughtfully told me: “My biggest regret is that Bob and I are both becoming hopeless and helpless, instead of focusing on enjoying what we can still do and have left. I am committed to doing whatever it takes to change my perspective one baby step at a time, so that I don’t keep living with that kind of regret for the rest of my life.”
I believe we can all benefit by examining the lens through which we are viewing our respective caregiving journeys, and to identify what would be useful to adapt and change in our perceptions as care partners. I urge all of us to contemplate what stories we may have unintentionally made up about our caregiving situations that no longer serve us, and then to change that narrative for the better. If we are courageous enough to name the elephant in the room and to be flexible in our perspectives, then the help and support we deserve will be more readily available to us when we need it most. As Oprah Winfrey tells us: “The smallest change in perspective can transform a life. What tiny attitude adjustment might turn your life around?”
Kay Adams, LCSW, is a Licensed Clinical Social Worker who resides in Denver, Colorado. Kay has a contagious passion for improving the lives of people living with dementia, as well as their personal and professional care partners. Kay is a PAC Certified Independent Consultant, Trainer, and Speaker. Kay has an extensive background working in the fields of geriatrics, hospice, palliative care, and mental health. Known for bringing passion, integrity, humor, and a unique authenticity to her work, Kay can make often uncomfortable topics safe to explore for family and professional care partners alike.