💬 Caregiving as a Spouse/Partner: "

August 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.

Carolyn and Team - please could you lead the discussion and respond to comments. I’m still in high-carer mode given Mum’s fall at home on Monday and emergency hospitalisation (17 hours ER and ‘incidents’ I had to manage - more on that later). She was discharged home late Wednesday night but, as you know, this is an intense period of activity to ensure her safety, pain management, follow-ups, rescheduling appointments, including the usual caregiving. Thank you!

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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.

• August 7th: Caregiving as a parent discussion “

• August 14th “Eldercare /Caregiving for parents” discussion

Our collaboration team members

I’m pleased to introduce you to our 13 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.

1. Anne

2. Anna Du Pen

3. Allie Varga_Spousal Caregiver

4. Alzheimer's Witness Cindy Roman

5. Carolyn Malone

6. Caregivers Count with Kaeli

7. Liza Wyles

8. Marcilina Martel

9. The Together Hub Marina Ortiz Caiuby

10. Pam Johnston

11. Searching for the Words Patricia Paddey

12. Dr Rachel Molloy

13. Alice Henry

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.

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Victoria: Last month’s discussion cohosted by Allie Varga_Spousal Caregiver and myself was an opportunity to dive deeper into “The Lonely Marriage. Exploring the Specific Isolation of the Spousal Caregiver. “

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. Our exchange has laid firmer ground for more discussions.

Soon after last month’s discussion, Carolyn and I explored topics for today.

Carolyn: One possible question we could explore would be:

“How do you maintain your identity or sense of self while caregiving for your spouse/partner? What tips do you have or what do you do to maintain your sense of self during this difficult phase of life?”

This is something I grapple with. Caregiving has made my life narrow, and I’m determined to create a life for Carolyn that extends beyond my partner’s needs.

Victoria: Can you turn that into a specific experience relating to caring for your partner? Instead of asking questions to our community, it would be great to offer your personal experience as a perspective others can relate to.

Perhaps you can write about a shift in your sense of self now that you’re caring for your partner. I’m trying to really hone in on personal experiences, so each person doesn’t need to try to ‘translate’ their actions/feelings for others but simply state their experience as an example.

Carers already do enough bridging and translating. Hopefully this space allows our community of spouse/partner caregivers to have more space to expand their reflections, rather than trying to ‘normalise’ it to what other people ‘think’ their caregiving experiences are.

Carolyn: In my article, Sharing An Address, Not a Life, I opened the essay with my attempts to get my partner to do various activities with me.

I tell him that I am lonely. I am very upfront with him about my need for social stimulation. While he wants to sit at home and do nothing (which I’m told is normal as cognitive decline progresses), I have decided to start carving out a life for myself.

I take tai chi classes, attend writing salons, write at my neighbourhood cafe, meet with my caregiver friends for lunch, and participate in activities at my local community centre.

I watched my mom be a caregiver for my brother (who had a traumatic brain injury) for over 30 years and it swallowed her up whole.

I’m trying to avoid martyrdom like my mom did. I watched it destroy her. Yes, her situation was different because it was mother and son, but the principle is the same: caregiving can swallow you up no matter what caregiving dynamic you are in.

Sometimes I feel guilty for trying to nurture a fulfilling life outside of my caregiving role, but I have been open and honest with my partner.

In my caregiver support group, my social worker once said, “Please don’t let this disease ruin two lives.” That really stuck with me. So, that phrase from my social worker and my mom’s total self-sacrifice in caring for my brother have helped shape the way I approach caregiving.

Let me stress that trying to build a life of my own alongside my caregiving is not easy, but I am determined to try. I’m deeply interested in seeing what others have to say on this topic.

Victoria: Thanks for sharing, Carolyn. I hear you. I could share my experiences about caring for my parents, too, because this touches several broader caregiving topics like identity, having your own time and space, how we communicate with the person we care for, and how they behave…and so much more. But here, let’s focus on caring for a spouse/partner. I’m curious to learn more from the team and what readers will share.

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For our discussion

1. Briefly introduce yourself: where you live, who you care for and how long you’ve been caring.

2. Share your thoughts on Carolyn’s reflections or answer this prompt:

For those navigating spousal/partner caregiving, how do you actively protect your own identity and carve out a life for yourself without letting your caregiving role consume you?

3. Please share and reply to other comments.

A Reminder: Let’s remember that there is no right or wrong here. This community space is founded on empathy, mutual support and inclusivity. Please lead with kindness.

Encouragement: 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.

Please remember to ‘❤️’ LIKE the article to guide others to this discussion