“The worst part of holding the memories is not the pain. 

It’s the loneliness of it. Memories need to be shared.”

― Lois Lowry, The Giver

A mentor and friend of mine recalled a humorous and relatable incident years ago when she encountered an acquaintance at the grocery store and impulsively ducked behind a shelf to avoid interaction until she could conjure her name. Socially, it was important to her (to most of us it would be) to be able to pair the correct name with the correct context and other familiar details she could recall for connection. We’ve all been there, it’s frustrating and for many of us, it’s only occasional. While we can shrug off awkward encounters with acquaintances, it’s a distinct and confronting situation when someone we love dearly begins to forget precious and poignant details which convey deep familiarity and mutual connection. Our names, our shared histories and complementary roles create the essence and engine of a close relationship. The shift is often catastrophic for care partners internally, while the structure of a committed relationship and all the responsibilities must carry on, outwardly (and on the shoulders of the caregiver) and often with little to no opportunities to grieve ongoing changes. Caregivers don’t just miss the person they love and how they used to be, they also miss treasured parts of themselves and how they used to be.  


Alongside any dementia are the diminished and changing roles of other significant names and titles we hold: wife, husband, best friend, mother, father, sister, brother… Some are cherished names and others may be strained or even estranged. As humans, we thrive on connection and it’s scary to imagine not being able to convey mutual connection and depth. Whether a relationship is a peripheral one or central in our lives, the ability to navigate each one matters, and it’s the reciprocal aspect which becomes so painful in dementia care. We often stop short in conversations about the impact of memory loss and miss the opportunity to illustrate the care partner experience; how important other people are to our identity and self-image, how our roles and relationships define so much of how we live and the essence of our lives. Any significant change or ending in a relationship in our lifetime, be it through divorce, relocation, illness or a death, significantly impacts our relationship to ourselves and our attachment to the roles we carried in these relationships, be they beloved or begrudged. The degree to which we adapt and navigate these changes, with either confidence or reluctance, is indicated by the amount of grief we carry for what we feel we are losing.  


For dementia family caregivers, these changes are often insidious, profound and ongoing. In addition to our personalities, personal achievements and interests, who we are is also informed by the meaning other people bring to our lives; who we are in their purview and how they reflect these parts of ourselves back to us. This makes sense when we consider how the people we care about the most actually carry memories of us too. Unlike set pieces of a mosaic or a puzzle, who we are is a changing landscape, and our relationships are gardens. When a beloved person can no longer participate in the care of the relationship due to dementia or other reasons, we must adapt and decide how to change the shape of the relationship so it remains healthy and sustainable for all. As a couple, partnership, close family member or beloved friend, we need to discuss what has changed in and for us and how our relationship roles and the experience of being in relationship impacts our sense of self and our place in this world. It’s not a puzzle to solve, it’s an important story to tell. And within the sharing of the many multitudes of our many names, we can access healing.


Here are a few prompts to explore in writing or with a trusted person in a supportive conversation:


What are your most precious names and titles? How have they changed over your lifespan? How about most recently? What name and corresponding relationship is presently experiencing the most change or transformation? How do you feel about this? And how does this impact your identity or self-perception?


Have you ever or are you presently experiencing the loss or transformation of a beloved name? How has this changed or impacted who you are today? Is there bittersweetness in this change or something else entirely? Does the name you once held still live somewhere in your consciousness? What is your relationship to this part of yourself today? How does this impact you as a partner, friend, or caregiver?  How does this impact the relationship you have with yourself and your wellbeing?

— Laura Rice-Oeschger, LMSW

Wellness Initiative Managing Director

Program Registration

Catching Your Breath


April 10, 10 - 11:30 a.m., Virtual

 

Catching Your Breath is a monthly program focused on learning and practicing stress resilience skills for continued health, balance, and well-being. The program is for family caregivers of adults living with a dementia.

Register

Mitten Minds Support Group


April 18, 3 - 4 p.m., Virtual

 

The Mitten Minds Support Group is a monthly support group for individuals with mild cognitive impairment or early stage dementia. The support group provides a space for individuals living with memory loss to meet and learn from others going through similar experiences.

Register

Soothing Word of the Month

Ineffable (adj) - too great or extreme to be expressed or described in words.

Michigan Alzheimer's Disease Center

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