Relationship Grieving—Caregiver Style
“Who would you most want to share a meal with?” is the question. If the answer is not a celebrity or famous person, the response almost always involves wanting to share a meal with a loved one whom you can no longer laugh with, interact with, or learn from. Someone you care about who is no longer present. When caregivers hear this question, they know of another option. But it’s not an answer most would understand or feel comfortable with. What if the response to this question involves naming someone you love whom is still alive, yet different than they used to be?
When most people think of conversing with another, they think of talking to one person. Caregivers, however, know that interacting with one person is a misnomer.
It’s simply inaccurate. In intense and long-standing relationships, like caregiving, we are always interacting with a composite of past experiences and memories that we can’t help ourselves from bringing with us into every present, unfolding interaction.
When our loved one changes because of illness or incapacity, we too are changed. The person in front of us is different than they were in the past. And if we are changed and the person we care for is changed, then our relationship is inevitably different. And what can live within this difference is a profound kind of loneliness and disorientation called relationship grieving.
“I am with someone I know so deeply, yet, it is because of our shared history that I feel more alone than I might ever have felt if I was actually, physically alone.”
Giving voice to the deep awareness of what is no longer possible in your relationship is difficult to translate. If you were to proclaim the loneliness you feel when interacting with the person you care for—this very person you love so dearly—then what would others think or say?
Yes, you are interacting with someone you know but you are also interacting with someone you do not know. It is in this ongoing tension that you may grieve in ways that others won’t notice because they only see what is present, not the fact that absence and presence always disguise themselves as one another for those of us in the midst of relationship grieving. Caregivers interact with their loved ones on a plane of multiple dimensions. They are never just communicating with the person before them.
You are aware of multiple possibilities that most others can’t see or know.
The awareness of what is happening between you and your loved one provides the foreground of your interactions and appreciation of what used to be forms the background. The challenge of relationship grieving is that background and foreground are constantly shifting.
They don’t arrange themselves based on chronology. Instead, they blur into one another, defying time but always becoming more prominent and difficult to let go of when in the company of our wants and needs and desires.
Relationship grieving means trying to convince ourselves that we need to adjust our relationship expectations even as we are hearing the sound of our loved one’s ever-familiar voice. The relationship habits we had originally created with our loved one don’t simply fade away.
Relationship habits have to be rebuffed and silenced, time and time again, as if they live beyond us in ways that require us to repeatedly say ‘no’ to our relationship memories so we can continue to say ‘yes’ to the person we are interacting with now.
Relationship grieving means believing that one smile, one laugh, or one moment of connection is evidence that the way your relationship used to be is now, again, within reach. And then your expectations go headlong into another interaction with this same loved one that sounds and acts nothing like you had expected. Hope quickly runs into perceived absence. And connection is overwhelmed by an unwavering awareness of difference. These realizations are jarring, not outwardly, but within us, as new realities seem to take away from us what we most wanted to happen between us—but doesn’t or can’t.
Relationship grieving means not being able to explain why you are grieving even though your loved may be next to you. Yes, you are with someone you love but the person you are with may no longer be the person you remember. Or the person you once loved. Or the person that made possible the you and us of your relationship so special and distinct.
Relationship grieving involves being constantly aware of the simultaneous presence of your loved one’s absence and the absence of your loved one’s presence.
The question, “How is _________?” is so much more complicated than it sounds because it’s missing something. It’s missing a vital, but almost never asked follow up question. “How are you adjusting to your new relationship with someone you already know so intimately?”
Asking this one question may just open the possibility of understanding as it recognizes that caregiver relationships don’t just change how we interact with someone we love, they also impact how we understand ourselves in our evolving relationships.
Zachary White, Ph.D. is the co-author (with Donna Thomson) of the book,“The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver.”
Very good in sight. One could even add – chasing after new relationships in an effort to fill that emptiness.
Zachary,
This is a brilliant post. Thank you for helping us with these insights.
Norris
Indeed, the most accurate description of what happens that I have ever read. Thank you for these insights. Kate
Perfect way of describing these evolving and complicated relationships. Thank you for putting into words what is so hard for many to grasp.
Thanks so much for your insights, Sharon. And thank you for participating in the Unprepared Caregiver community.
Unfortunately, I did not find this blog until nearly the end of my husband’s life in November 2018. He had vascular dementia, and I was his caregiver for about 9 years. I was fortunate to be able to afford memory care for his last 2 years, even though it took all of our savings.
This comment is very belated, but I just came across this post on relationship grieving.
As another reader has commented, this post is–in my experience–uniquely insightful. It captures the caregiver experience that I found to be by far the hardest and most stressful–and most enduring, since a version of it is still with me, nearly six months after my husband’s death. It’s become somewhat easier now to remember who he was before dementia began to affect his personality—but there’s a way in which I continue to shift between grieving the person I knew during the first 35 years of our life together and grieving (in a quite different way) the person I knew for the last 9 or 10. And then I also grieve the very experience of watching him decline, slowly but relentlessly.
It does help to read a piece that describes the experience so well, even while–or maybe *because* — it clarifies why caregiving a spouse with dementia can feel like such long-term emotional torture. Thank you.
Carla–thank you for your heartfelt and deeply moving response. So glad you found this post meaningful and relevant to your own caregiver experiences.
Thank you Sharon.
Thank you Kate.
Thank you Norris.
Well said, Nancy.
Thank you for helping me understand why I feel the way I do & letting me know I am not alone. I am fairly young, but have felt this relationship grieving lately with my husband’s chronic illnes. For us, it is also grieving the loss of future possibilities. Many things I thought we might do as we got older are no longer certain. It is a hard reality to come to terms with.
Thanks for sharing your caregiving experiences Kira. You describe what so many caregivers experience but don’t have a language to describe. I talk about this phenomenon in much greater detail in my book, “The Unexpected Journey of Caregiving: The Transformation from Loved One to Caregiver.” Thank you again for participating in the Unprepared Caregiver community.
Thank you for addressing these issues. It is spot on for me. I care for my husband who is a stroke survivor of 11 years. Family always ask how he is doing but not about me. Life changed forever on that day in Nov. 2008. I mourn the loss of the man that I fell in love with and now face daily challenges that are a reminder of what we once had together. If I had it all to do over again, I would.
Lori,
Your experiences are why this community is so important–bringing language and meaning to our experiences in ways that move us to understanding and connection.