Podcast Summary: Turning Points: Navigating Mental Health
Episode: Caring for Loved Ones with Dementia (S5E2)
Host: Frances Leese (Tufts Health Plan | Boston Globe Media)
Guests: Melissa (family caregiver), Marie Cuqueur (Clinical Social Worker, McLean Hospital)
Date: October 15, 2025
Overview:
This episode explores the complex, emotional, and transformative realities of caring for a loved one with dementia. Through the personal journey of Melissa, a full-time caregiver for her grandmother (“Nana”), and insights from mental health expert Marie Cuqueur, the show sheds light on the challenges, small joys, and the importance of community for caregivers. It discusses the “long goodbye,” caregiver burnout, ambiguous loss, and the powerful but often unseen impact caregivers have—not only on their loved ones but also on themselves.
Key Discussion Points & Insights
1. The Start of a Caregiving Journey
- Melissa’s Story Begins: What began as Nana moving in “for a weekend, perhaps two” turned into 11 years of care.
"I didn't want her to be alone, so I told her, why don't you stay with us?" – Melissa [00:17]
- A visit to a memory care facility became a turning point when Nana expressed her desire to stay with family, and Melissa embraced that commitment.
"She looked at me and she says, 'Why do I have to live here? Why can't I stay with you guys?' And I said, 'You can stay with me if you want to.' … So that's what we did." – Melissa [02:46]
2. Living with Dementia: Daily Life & Emotional Adjustments
- Household Adaptation: The family renovated their space to give Nana independence and comfort; bringing familiar objects helped ease the transition.
"We brought a lot of her things into the house so that she still had her familiar things with her…" – Melissa [05:19]
- Daily Routines & Demands: Melissa balances work, caregiving, and managing a busy home, rarely stopping until the day’s end.
"I don't usually stop until about 8:15, 8:30. And when I do, I am done." – Melissa [06:54]
- With dementia’s progression, Nana became less aware of time and more physically frail, but also continued to experience moments of joy and activity.
"She was so happy, so happy to be alive." – Melissa, after visiting a theme park [07:49]
3. The Invisible Labor & Emotional Complexity of Caregiving
- Patience, Adaptability & “Letting It Roll Off”: Melissa notes the importance of not taking things personally and going with the flow.
"You have to have patience, and you have to learn to just go with the flow. Sometimes when they say things that could hurt you... you just have to let it roll off your shoulders." – Melissa [08:12]
- Foundation of Love: A decades-long bond makes even hard moments meaningful.
"She trusts me… that really is a big thing." – Melissa [08:44]
4. Finding Community & Support—Going Public
- Social Media as Solace: During COVID, Melissa began sharing her daily life with Nana on TikTok, creating a viral community.
"Before I knew it, we were, like, celebrating 1 million views… These people have really become our family that we don't have, and I'm very, very grateful to them." – Melissa [10:58]
- Other caregivers found comfort and camaraderie in Melissa’s posts.
"Some people will say that I look forward to seeing your vibrant smile every day, your messages to love, seeing your grandmother, the love between you two." – Melissa [11:04]
5. The Need for Self-Care, Boundaries, & Guilt
- Learning Self-Care: Melissa now intentionally makes time for herself—workouts, social visits, dates with her husband—even simple solitude.
"I used to not do anything really for myself... but I have really learned that it is important… If you don't take some time for yourself … you will burn out." – Melissa [12:44]
- Persistent Guilt: Even when making time for herself, Melissa feels the tug of responsibility and guilt.
"If I'm doing something for me, of course I feel a little bit guilt… it's always in my head." – Melissa [14:09]
6. Hardest and Most Meaningful Moments
- Facing Loss: The most difficult times are when Nana expresses her desire to die.
"The hardest is when she tells me… she's ready for God to take her, that she's lived long enough and she wants to die. And that's heartbreaking.” – Melissa [14:52]
- Gratitude and Growth: In return, Nana’s gratitude and presence are a daily gift.
“The rewarding part is her thanking me. And... she is so thankful, and I'm thankful because she's thankful.” – Melissa [15:13]
- Personal Growth: Patience, strength, and perspective were unexpected rewards.
“I've learned to be strong… and patience. She's given me my patience.” – Melissa [15:34]
Expert Perspective: Marie Cuqueur, Clinical Social Worker
1. The “Long Goodbye” and Ambiguous Loss
- Grieving Before Death: Dementia caregiving is uniquely difficult because loss is ongoing and ambiguous, unlike death, which has closure.
“Ambiguous loss ... is where the person is physically present but psychologically unpredictably absent...” – Marie Cuqueur [24:19]
2. Societal and Emotional Toll
- Lack of Support: Caregivers commonly feel isolated with little societal recognition, amplifying grief and exhaustion.
“With this, where it's so hard to perceive these losses… there’s no way for our communities to help someone through the grieving process…” – Marie [18:29]
- Risk to Health: Dementia caregiving is correlated with higher rates of chronic disease, even premature death for caregivers.
“...dementia caregiving has a higher rate of quite a number of other negative health outcomes… even Cancer… we’ve even had caregivers who have passed away before their loved ones.” – Marie [19:14]
3. The Importance of Connection
- The Need for Social Support: Peer support groups alleviate the profound loneliness and help caregivers process guilt and grief.
“When peers give some feedback… all of a sudden, that loneliness and that sense of loss of your loved one becomes a sense of gain and connection…” – Marie [22:57]
4. Caregiver Guilt and Burnout
- Self-Compassion Over Perfection: Encourages caregivers to experiment with self-care without expecting guilt to disappear immediately.
“Let’s try an experiment… usually they don’t come back and say, ‘oh, my goodness, it was amazing.’ But they say, ‘I tolerated it, I felt shame, I didn't feel great. I came back, my loved one was fine without me.’” – Marie [27:51]
- Structural Solutions Needed: Beyond personal strategies, society must provide respite programs and real support.
“One is more and more opportunities for dementia caregivers to connect… and the other… is offering concrete opportunities for dementia caregivers to have a break.” – Marie [28:32]
- Finding Beauty and Growth: Despite the tragedy, caregiving can invite families to take up their loved one’s legacy and find growth amid difficulty.
“It’s tragic and I want to leave out open the opportunity to find the beauty in this…” – Marie [29:22]
Memorable Quotes & Moments
- “It's almost like a privilege to be a part of that journey.” – Frances Leese [03:32]
- “Every day I just live my life like I don't know what I'm going to get.” – Melissa [08:34]
- On TikTok Community: “These people have really become our family that we don't have, and I'm very, very grateful to them.” – Melissa [10:58]
- On Guilt: “She’s everybody’s responsibility, but she’s my responsibility. I feel like more. So if I'm doing something for me, of course I feel a little bit guilt.” – Melissa [14:09]
- On Dual Realities: “We live in a dualistic world where two things are true. The first thing that's true is dementia is… undeniably tragic… and I want to leave out open the opportunity to find the beauty in this…” – Marie Cuqueur [29:22]
Resourceful Advice & Early Warning Signs
- Early Signs: Not all memory lapses are dementia, but signs like confusion about objects’ functions, difficulty planning, or new emotional instability should prompt screening.
“…even things like depression, withdrawal… can show up years before dementia diagnosis is made.” – Marie [31:27]
Giving Back
- Support through Action: Melissa and her sister created bracelets for Alzheimer’s and caregiver support, donating proceeds to relevant nonprofits.
“One will be for Alzheimer's and one will be for caregivers. And a certain percentage of the proceeds will go to the nonprofit organizations that I choose.” – Melissa [32:23]
Conclusion
Summary Reflection:
Caregiving for a loved one with dementia is a profound act of love and endurance, marked by daily challenges, emotional ambiguity, and a need for support. Melissa’s story—and Marie’s clinical expertise—demonstrate how connection, self-compassion, and community can transform even the hardest days. The episode emphasizes: you don’t have to be perfect to be enough, and reaching out for support is its own kind of courage.
“Caregiving, while demanding, can also be transformative. It calls us to develop patience we didn't know we had, to find strength in vulnerability, and to discover that love takes many forms—including the daily choice to show up for someone who may not remember your name but still feels your presence.” – Frances Leese [33:42]
Timestamps for Important Segments
- [00:17] – Melissa invites Nana to stay; “weekend” becomes permanent
- [02:46] – Turning point: Nana chooses family over memory care
- [05:19] – Creating a home-within-a-home for Nana
- [10:58] – Going viral on TikTok, building caregiver community
- [12:44] – Learning to prioritize self-care as a caregiver
- [14:52] – Hardest and most meaningful moments for Melissa
- [19:14] – Health toll of dementia caregiving, expert perspective
- [24:19] – Defining ambiguous loss and “the long goodbye”
- [27:51] – Experimenting with self-care and managing guilt
- [29:22] – Finding dual realities: tragedy and beauty
- [32:23] – Fundraising through bracelet sales for Alzheimer’s and caregiver support
For more resources, visit globe.com/turningpoints.
Stay healthy in mind and spirit.