Bottomless Well of Patience - by Bonnie Shetler
I recently had the opportunity to sit with a group of nine caregivers for people living with Alzheimer's or another dementia and who participate in the Alzheimers Association caregiver support groups. While they represent different groups, each of them is caring for or has cared for and lost a spouse experiencing dementia. They agreed to meet with me to help me understand what participating in such a group has meant to them.
Their stories illustrate that caregiving is a continuous unpredictable challenge to adapt to an ever-changing circumstance. It is an unexpected role undertaken while dealing with the gradual and heartbreaking loss of a partner. The title of this piece was offered by one of the respondents to describe the key lesson he learned to guide him through the process of caring for a wife whose behavior and world view have become unpredictable and at times totally unfathomable.
At some point most of these caregivers have established an overriding strategy of problem solving to help confront each stage of decline. Most have settled into the ride they are in for and focus on the big picture rather than lament the incidental crises. Unmatched socks and angry outbursts become routine maintenance items. As one caregiver husband suggested, that “bottomless well of patience” is essential to maintaining the calm and perspective needed to tackle each new obstacle. However reaching that place alone is not easy when you have lost the very person you might have turned to for support.
What the group unanimously shared is that the experience of listening to others’ accounts and sharing their own stories is a multi-faceted blessing and keeps them coming back for more. Here are some of the things they value and why they continue.
A sense of connection to others with similar challenges
Listening to others’ “horror stories”, ones they themselves may eventually encounter
Hearing that, as hopeless as circumstances appear in the moment, things do come out ok in the end. i.e. you can survive this.
Reminders that the course of the disease is inevitable and cannot be changed with reason or the usual mechanisms for correcting life’s setbacks
Understanding the value of distraction over reasonable explanation
Recognizing your spouse lives in a separate universe
Support and perspective can still be gained after the death of the spouse - many continue to attend for that purpose
Creating and valuing brief moments of joy
Exploring resources and sharing strategies for care
Benefiting from the experience and advice of natural problem solvers
Acknowledging the shifting world of caregiving. What worked last week…
A relief to find a community of big understanding hearts
Shared humor helps
Creating a “bottomless well of patience” helps take the edge off.
In the course of this interview I was drawn to the good natured camaraderie of these caregivers whose group experiences were divided across different support groups. This actually felt like one big group supporting each other’s stories, as if recounting the shared experience of caregiving creates its own spontaneous bond of listeners and story tellers. I appreciate their willingness to sit down with me, a complete stranger, to help me understand the world(s) in which they live.
To find more information about Colorado support groups in your area:
Call the Alzheimers Association helpline: 1-800-272-3900
Or check the online list of Colorado groups
Bonnie Shetler lives in the foothills west of Fort Collins where she works and volunteers remotely, sometimes writes, often bikes, hikes, reads, and idly considers the vastness of time and space. She and her husband both enjoy exploring and camping in the back country.
