💬 Caregiving as a Spouse/Partner: "The Lonely Marriage. Exploring the Specific Isolation of the Spousal Caregiver. "
July's Carer Mentor Community Network Discussion.
Hello! If you’re new to Carer Mentor, welcome! Thank you for being here! You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?
The Carer Mentor website is a hub of tools, resources & insights, as well as a community support network. A portal of hope ❤️ Start exploring here.
The Premise for these monthly discussions: different relational dynamics within caregiving.
Carer Mentor offers heartfelt empathy for caregivers. On the one hand, our individual circumstances, struggles, cultures, values, and backgrounds make our experiences unique. On the other hand, we’re united by universal life experiences: birth, death, feelings, and vulnerabilities; our humanity.
Another dimension we don’t often discuss is the relational dynamics of caregiving. I focus on eldercare/caring for my parents, but many friends care for their spouse/partner, child, or sibling. In addition, these days we recognise that caregiving stretches beyond blood ties. Various forms of kinship care, care communities, or caring among chosen family are emerging. While we may share experiences of caregiving as a whole, I’m curious to explore these caregiving relationships and offer caregiver-friends a space to connect.
This is why I started this new collaboration project to facilitate more community connections and discussion: Carer Mentor Community Network. The project involves monthly discussion groups.
July 3rd: Caregiving as a parent discussion “The 75 Second Ride: What a Roller Coaster Taught Me About Preparing for Everything and Being Present for Nothing” by Amy J Brown , who publishes More Than A Caregiver
July 10 “Eldercare /Caregiving for parents” discussion focused on a discombobulating question “Doesn’t caregiving get easier over time?”
Our collaboration team members
I’m pleased to introduce you to our 12 team members. Each person has a publication in which they share their thoughts on caregiving for an older family member, friend, or parent(s). Click each name to find out more about them.
Alzheimer's Witness Cindy Roman
The Together Hub Marina Ortiz Caiuby
Searching for the Words Patricia Paddey
Important details
Mark your calendars: Caregiving as a Spouse/Partner discussions will be on the THIRD Friday of every month.
The discussion will start on a Friday, but won’t close. Join on Friday or over the weekend, or whenever you can. No pressure, we know how precious and unpredictable our time can be.
Victoria: I asked Allie if we could share our recent exchange of messages. It’s a great example of how, together, we can gain a deeper appreciation of each other’s caregiving challenges and amplify them for the benefit of others. Too often, all types of caregiving are ‘lumped together’.
My hope is that you feel you can freely share whatever you wish, knowing that this is a dedicated space and lens for your caregiving. My thanks to Allie for being open to my thoughts and for agreeing to share our notes.
“The Lonely Marriage: Exploring the Specific Isolation of the Spousal Caregiver.” By Allie Varga_Spousal Caregiver
The Spark: It began with a Note I posted on Substack, reflecting on a structural boundary I often observe in the caregiving world:
“There is a profound, structural difference in caregiving that people outside this life rarely see.
When a devoted partner helps care for a parent or an aging relative, it is undeniably brutal. But at the end of a grueling day, they often still have a peer to come home to—a partner to help carry the emotional weight, share the mental load, and remind them of who they are outside of the crisis.
As a spousal caregiver, the partner who used to be your soft place to land is the person you are caring for. Your refuge is what was lost.
You aren’t just navigating the physical labor of another identical tomorrow; you are quietly grieving the loss of parity inside your own marriage, carrying the entire weight of the “we” completely alone in the dark..”
The Friction: Victoria gently and rightly pushed back on this comparison, via a direct message to me, sharing a perspective that is crucial to the broader caregiving conversation:
Hi Allie - just a quick DM, about your note: I hear you and understand why you’ve written what you have but I just wanted to share a personal opinion here (not on the Substack notes) that your message leaves out the single, childless or single parents who care for ageing/elderly parents, or my own living 24/7 with my Mum, or the sandwiched gen who are struggling with work/kids/partner...your comparison assumes a lens of ‘grass is greener’ for eldercarers who have a spouse...I’ve seen some situations like that and many others where the carer doesn’t feel they’re doing anything well...Every caregiver I met is trying to reconcile and sustain their sense of self beyond being a carer...even with support from friends/a partner/others... I’ve not met anyone whose identity isn’t impacted heavily by caregiving. I feel your frustration, pain and I don’t see any caregiving situation better-off than another - such is the state of caregiving today.
The Deeper Truth: When I re-read my initial words through Victoria’s lens, I realized how easily they could sound like a “grass is greener” comparison. That was never my intent.
The identity crisis, the exhausting day-to-day grind, and the heavy emotional toll are universal for anyone in a 24/7 care role. The immense burden on single, adult-child, or “sandwich generation” caregivers is undeniable and deeply brutal.
My frustration did not come from comparing hardships, but from trying to articulate a very specific, deeply personal layer of the spousal lens.
When your spouse is the one who requires total care, it introduces a unique kind of isolation. You are completely alone within the marriage.
The person who used to be your anchor, your sounding board, and your romantic partner is now your full-time charge.
Personally, I deeply crave intimacy and closeness, but the profound grief of spousal caregiving is that the peer you long to turn to for comfort is the very person you are caring for.
Instead of comparing who has it harder, we need to look more closely at these distinct dynamics. Understanding the specific geometry of each caregiving relationship does not divide us. It allows us to truly see one another in the dark.
Victoria: Thanks, Allie! As I said in our DM, our exchange underscores the need for more dynamic, open conversations to identify the specific challenges and realities faced by different caregivers. It’s why I wanted to start these monthly discussions and create dedicated spaces for each type of caregiving.
For our discussion
Briefly introduce yourself: where you live, who you care for and how long you’ve been caring.
Share your thoughts on Allie’s reflections or answer this prompt:
What specific challenges or issues do you feel are unique to caregiving as a spouse/partner?
There’s no need to qualify or compare with other types of caregiving; just share your feelings and thoughts. You’re the experts, and voicing your thoughts may help others raise theirs.
Please share and reply to other comments.
Please remember to ‘❤️’ LIKE the article to guide others to this discussion
Dear Friends, when you are raising a specific point or challenge, please feel free to share a note, or an article you've published, or a resource you've found - something that may more fully expand on your point or offer support to someone else. Please describe why you're sharing it and the URL.
This is your opportunity to share what you may not feel you can share with caregivers who aren't caring for their partner/spouse. This space is for you and between you. Resonance building your diverse experiences.
Hi. I'm Carolyn. I live in the NYC metropolitan area. I care for my partner, who currently has mild cognitive impairment and stage iv chronic kidney disease. This is round two of caregiving. I first became a caregiver 20 years ago when my same partner had a major stroke, which involved a two-year recovery period. I totally identify with the loneliness of caring for a spouse, your person who is disappearing. The first time around Tim was present and could be empathetic toward what I was going through as a caregiver. This time around, with his mild cognitive impairment, he has more of a "flat affect," and is disappearing. He is no longer the person I can lean on for emotional support, which is quite difficult. I try to counteract this by going out and leaning on others, but it is still sad. It comforts me to read Allie's words and know that I'm not alone. What particularly resonates is when she says, "As a spousal caregiver, the partner who used to be your soft lace to land is the person you are caring for. Your refuge is what is lost." I talk about my own loneliness in my latest article, "Sharing an Address, Not a Life."
https://carolynmalone.substack.com/p/sharing-an-address-not-a-life