Thoughts and Suggestions from an Aging Psychologist.

In my previous post, Unlocking the Ten Essential Spaces Every Caregiver Needs, I discussed what caregivers need to avoid burnout or becoming “hidden patients” under the stress of the caregiving role. I suggested the idea of ten spaces that are negatively affected when one becomes a caregiver. For example, caregivers need connectivity with others besides the care recipient. When the role requires them to be physically available for extended and unpredictable periods, they often sacrifice attention to their own needs, sometimes even beyond the bare minimum.

Caregiver Fatigue and Dissatisfaction

Beyond the fatigue that caregivers experience, there is often a feeling of dissatisfaction or unfulfillment. While we caregivers can identify that our needs are not being met, it is not always clear what those needs are and what would help. To address that, I suggested an activity to help clarify these needs. The activity asked caregivers to consider each of the ten spaces individually and ask:

• Which are typically (before becoming a caregiver) important to you?
• How important is each space to you now (in your role as a caregiver)?

Space priorities and intensities (perceived importance) vary over time. Check-ins are encouraged whenever excessive fatigue and dissatisfaction are identified. For example, for me right now, my spaces “to escape” and “to relax” are the ones that feel most relevant. Recognizing this puts me in a better position to think about what I might do to help myself and how I reply when asked, “How can I help?”

Emotional and Resource Commitments

Becoming a caregiver inherently implies commitments of time, energy, and financial resources. There are emotional commitments that come with the role as well. In addition to the stress on these primary resources, the “spaces” are impacted by our use of denial as a way of coping with unpleasant feelings such as anger and resentment. And the feeling of shame—shame that we are not up to meeting the demands of the role or when we have bad thoughts.

Our denial also gets in the way of our ability to recognize what we are missing and what we need. When we can make our needs known to ourselves and to others, they become more manageable and tolerable.

The 4 As for Caregivers: Acceptance, Accommodation, Advocacy, and Agency

The post on “Caregiver Spaces” has been actively visited, and feedback that it has been helpful encouraged me to share another idea that I hope might be helpful. This is a model I call “4 As for Caregivers: Acceptance, Accommodation, Advocacy, and Agency.”

Even when we identify what spaces need to be addressed, it’s not realistic to expect that we can fix every one of them by scheduling a spa day or taking a walk around the block. The 4 As model is offered as a lens to help us fulfill our role with the least amount of harm, encouraging openness to the positive experiences of being a caregiver. Sometimes these are so quiet and gentle as to get overlooked.

“You’re doing a good job, sweetheart.”

My friend, who was a caregiver for her husband for many years as he became increasingly more cognitively and motorically impaired, reported that every night when she tucked him into bed, he would look at her and say, “You’re doing a good job, sweetheart.” Years after his passing, she recounts how this touched her heart and helped her get through tough times. Yes, there are joys and rewards in the role.

1. Acceptance

The first A stands for Acceptance. I wrote in the previous post about the “moment of becoming,” the time when we recognize that we are now caregivers, spelled with a capital “C.” Taking on the role may have been something we anticipated, even planned for, or something that was thrust upon us instantly and often dramatically. Somewhere along the way, we consented, overtly or not, to assume the role, and we identify ourselves as caregivers. We are familiar with caregiver groups—groups of people who also identify as caregivers and meet for mutual learning and support. These groups fit the “spaces” of Connecting, Growing, Pride, and Sharing, and often other spaces as well.

2. Accommodation

The second A stands for Accommodation. This implies that you have accepted the caregiver role and now seek ways to meet the needs of the care recipient while also meeting the responsibilities of your other commitments and roles. Common examples are adult children who are caregivers for their elderly parents while raising their own children. Many caregivers also have work-related roles and attendant responsibilities. How does one’s own needs get met? To further complicate the challenge, neither your needs nor your care recipient’s needs are static. The situation is always changing.

A Real-Life Example:

When I was in clinical practice, I worked with a couple who had three school-aged children and seven older persons for whom they were the caregivers. Each of their parents had been divorced and remarried, so that, as a couple, they had eight parents of similar ages, six of whom needed care. Additionally, there was one paternal uncle for whom one of my patients was the relative who assumed care, totaling seven older adults to care for at the same time!

3. Advocacy

The third A stands for Advocacy. This incorporates the time, labor, and emotionally intensive aspects of the caregiving role, perhaps overarching the other functions. Advocacy refers to the myriad ways the caregiver enables the care recipient to receive the services and attention they need, be these medical, legal, community, spiritual, or family. Advocacy means speaking for the care recipient, reflecting their voice and what they would reasonably do for themselves if they could.

4. Agency

The fourth A stands for Agency. From the perspective of the care recipient, their experience often involves a pervasive and deep loss of agency, the sense of control over one’s life. It is the caregiver’s obligation to support and enable the recipient’s options and opportunities for agency. Often these are very limited, but it is essential that the caregiver seeks these out so the recipient feels heard and respected.

Activities

• For Caregivers: Do one nice thing for yourself today (no excuses!).
• For Those Who Know Caregivers: Ask, “How can I help?”
• For Caregivers with Children: If you have a child, adolescent, or older, ask them to read this post and discuss it with them.

Contact me. I hope you’ll find my “4-A Model” helpful. I’d love to hear back from you, especially about any creative ways you’ve put this to use.

Photo by Madeleine B.