Caring for Loved Ones with Dementia | S5E2

Summary

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

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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.

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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]

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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]

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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]

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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]

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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]

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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]

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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

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For more resources, visit globe.com/turningpoints.
Stay healthy in mind and spirit.

Transcript

[A]

So how did it come to be that Nana started living with you full time?

[B]

Well, it was going to be a weekend, perhaps two.

[A]

Melissa's story as a caregiver for her grandmother starts with a simple desire.

[B]

I didn't want her to be alone, so I told her, why don't you stay with us? And so she did.

[A]

This week on Turning Points, we're talking about what it really means. Means to care for a loved one with memory loss. For many, it's a journey filled with love, grief and uncertainty. And too often, families feel like they're facing it alone. In this episode, we open up space for the stories, challenges and quiet strengths that often go unseen. I'm Frances Leese, and this is Turning Points, a podcast about mental health from Tufts Health Plan. Caretakers are the unsung heroes of the health care system. They're the family, friends or neighbors who step up when a loved one can no longer care for themselves. When that loved one has dementia or Alzheimer's. Caregiving becomes something else entirely, a complex dance between holding on and letting go, between the person who was and the person who is now. The emotional weight of caregiving for loved ones with dementia goes far beyond the practical challenges. It's a journey marked by what experts call the long goodbye, a process of losing someone gradually while they're still physically present. This week on the podcast, we'll hear from both a caregiver and a mental health professional about the realities of this experience. The exhaustion, the guilt, the unexpected moments of joy, and the profound transformation that can come from showing up day after day for someone you love. Melissa was a working mother with two daughters and a husband, balancing her own family, friends and hobbies in the rhythm of her own life. Becoming a full time caregiver was never part of the plan. But when her grandmother, Virginia, who she calls Nana, came to stay for just a weekend, that visit turned into a new reality neither of them could have predicted.

[B]

I realized that she wasn't really able to care for herself as I thought she was able to.

[A]

Nana has Alzheimer's. After touring a memory care facility together, a simple question would reshape both their lives.

[B]

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. And she said, that's what I want to. So that's what we did.

[A]

That weekend has turned into 11 years together. What Melissa shares through her videos online captures both the profound challenges and unexpected gifts of dementia caregiving, a reality that's both heartbreaking and beautiful, exhausting and meaningful. My grandmother was my main caretaker, so we had a very close bond. And so when I was watching your videos, I was just getting all emotional and tearing up about being able to have that connection again.

[B]

Thank you.

[A]

It's almost like a privilege to be a part of that journey.

[B]

It's true. I don't take it for granted.

[A]

So tell me a little bit about Nana. Not just her diagnosis, but who she is to you. What's her personality like? What do you want people to know about her?

[B]

My Nana has always been one that I've always looked up to. She's had a beautiful life and loves the animals. Has passed that on to me of loving animals as well. I have five dogs. I just have so many memories of her being in the backyard with throwing the ball around, whether it was walking all the way up the street to get ice cream. No matter what was going on in my life, she and my grandpa Nelson have always been there for me, no matter what. All for all. I feel like she is the meaning of what family should be. And I feel like she has put that into my heart. And she has taught me a lot these 11 years of my own life. And I'm in my 50s.

[A]

When Nana first moved in, Melissa and her family had to quickly reimagine their entire household. There were practical considerations. They built their house to be fully accessible, with Nana having her own space downstairs. But there were also deeper emotional adjustments to navigate.

[B]

We all sort of just settled and molded right away from day one, and it just felt natural. But I have learned, being a caregiver, that it's really important to make my own time for my own self as well as with just the kids, because otherwise we get blown out.

[A]

Creating a home within a home. At helping Nana transition from her own independent space to becoming part of a multi generational household, it was about more than just physical accommodations.

[B]

We brought a lot of her things into the house so that she still had her familiar things with her and just sort of worked out, thank God, really well.

[A]

It's a tough decision. You know what strikes me about Melissa's approach is how she balanced the need to create safety and structure with preserving Nana's sense of autonomy and belonging. It's a balance that many caregiving families know well, how to care for someone without taking away their dignity. So can you give us a sense of day to day, of like, just waking up and getting Nana ready? I mean, I see the wonderful plated meals that you put together for her for breakfast. And can you just paint a picture of what that looks like for you?

[B]

Well, I get up about quarter past four, 4:30 usually every morning. I drive a school bus, a 40 foot school bus. And so I have to be out by a certain time. So I try to prep ahead of time. I try to lay out her clothes ahead of time so that when I get back from the bus I can get her up. A lot of times she's already up if I look at the camera and she's sleeping. When I get back from my bus, I'll go fly out to the post office or I'll go do whatever because Mike Frank is always here. He works from home full time, so it's a bless. When I get home, I usually will get her all ready and then I make her a big breakfast and we'll just do our day. We used to be able to go to the stores and she could walk, but it's just getting a little harder now. She gets, you know, tired. But I don't usually, honest to God, I have five dogs. I don't usually stop until about 8:15, 8:30. And when I do, I am done.

[A]

As her dementia has progressed, what has changed in your daily life?

[B]

Well, in August it will be 11 years. And when we first started it all, everything was okay. I mean, she had the memory loss, but it wasn't severe as it is now. I mean, she doesn't know the day of the week. She doesn't hate to say it. She doesn't give a crap about the day of the week or what year it is or who the president is. You know, when we go for our testing with the doctor, it's like she tells them off. She doesn't have any interest. But yeah, it's definitely progressing a lot more. I feel like she's getting a little weaker. She's ready to go to heaven and she tells me that all the time. But on the flip side, she's not ready because we just took her Saturday to Canopy Lake park up in Salem, New Hampshire for the whole entire day. And we had the best time. We even got her on a ride. She's 92 years old and we got her on an antique car ride. She was so happy, so happy to be alive. So it's things like that. Like I feel like she still has so much life in her and I just try to keep it going so that, you know, she doesn't give up because I don't want her to give up on me yet.

[A]

What's often invisible about being a Caregiver.

[B]

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 or you just have to let it roll off your shoulders.

[A]

Learning not to take things personally is essential when the person you love is acting and speaking from a mind altered by illness.

[B]

Every day I just live my life like I don't know what I'm going to get.

[A]

What grounds Melissa through the difficult moments is the foundation of love and trust built over decades.

[B]

I'm grateful that I have that. And she trusts me. I mean, she trusts all of us in this house, and that really is a big thing.

[A]

In the isolation of the COVID pandemic, Melissa turned to social media to share her life with Nana. Breakfast.

[B]

Breakfast time. So I did something really simple for dinner today. Breakfast. So just peanut butter toast and then homemade strawberry jam from our friend Joanne on tick tock. She made. She made us a jar of that.

[A]

Oh, and she's a sweetheart.

[B]

Yeah. I'm just gonna get you. There's a fly in there.

[A]

That's not a fly.

[B]

What is it?

[A]

A booger.

[B]

We're gonna go take off and go to Dunkin donuts. She has her coffee drink.

[A]

It's beautiful.

[B]

Here you go.

[A]

Oh, my God. It's on fire. Oh, Melissa.

[B]

Yeah, it's your Coors light.

[A]

It really is.

[B]

Yeah, it's magic.

[A]

Are you having fun, Nana?

[C]

You're having a blast, Mom.

[A]

Are you having fun? What began as a way to cope soon grew into a community of thousands of caregivers who saw themselves in her story.

[B]

Well, it's sort of funny because my children would be on TikTok, and I would be like, get off TikTok. You don't need to be on there. And then when the COVID hit, my children were like, why don't you just, you know, instead of always using your Snapchat and doing little videos and sending them to your friends, why don't you put it on TikTok? Because Nana has so much to, you know, to give. And before I knew it, we were, like, celebrating 1 million views. And I was like, holy Toledo. I couldn't even believe it. My grandmother knows what TikTok is, and she says good morning to the world to them. She gets presents sometimes and cards from people, and these people have really become our family that we don't have, and I'm very, very grateful to them.

[A]

The responses show just how much people long to know they weren't the only ones carrying this weight.

[B]

Oh, my gosh. 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. I mean, honestly, if I could get my phone and just read you some of the like the deep messages that are out there for anyone to read, it's pretty amazing that I can even do that.

[A]

It seems like you discovered something within your own self through this journey as well.

[B]

Yeah. Oh, 100%. Like I was saying before, like my grandmother has taught me so much. It also has taught Craig and I so much as a couple, we look at each other differently. I think caring for my grandmother, it's helped us. Yeah, yeah.

[A]

So we know that caregiving is tough work. And just like you said earlier, you start really early in the morning at 4am and sometimes it's not until 8:30 at night that you're finally just getting some time maybe to yourself. How do you care for yourself through all this? What helps you feel like you again?

[B]

I work out. I go and try to work out. I try to even walk. I get my nails done for myself every three weeks and I do get my hair colored like every five weeks. And that's what I do for myself. So it gets me out, gets me to chit chat. Sometimes on a Friday night my girlfriends will come over or I'll go to their house and we just hang out. Summertime, I usually go to the beach. I like having my date night with my Craig too. It's important that we have our date nights.

[A]

This wasn't always the case. Like many caregivers, Melissa had to learn this lesson the hard way.

[B]

Yes, I used to not do anything really for myself and I just always made sure everybody else around me was okay. But I have really have learned that it is important that you will burn out as a caregiver if you don't take some time for yourself. I mean, sometimes I like to just sit in my car and not hear anything and just be by myself. Or I might just go run out and grab a coffee and just sit and just chill for that few minutes. And that energizes me, you know, because I give a lot to not just Nana, but like I have to run the house. I have to make sure all my dogs are fed and that they're cleaned. My cycle doesn't end. There's always so much I have to do.

[A]

Yeah. The turning point came during a birthday trip when Melissa was turning 50.

[B]

I had gone away with Craig and we had gone to Puta Cana and we. Nana was home with just the kids. They took care of her. And I think that's when I really realized that I really needed to take care of myself and that I don't want to say I'm missing out on a lot, but there are times that I do miss out on certain things. And I realized, wow, I really need to separate certain things to allow me to be able to, you know, do a little bit more.

[A]

Caregivers may understand the need for self care, yet the guilt often overshadows every moment they try to claim for themselves.

[B]

I find that, like, if I'm getting my nails done, I'll slide onto my phone and look at the cameras and make sure she's okay. She wears a medical necklace as well. And Craig's always here, but I still find, like, you know, 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. And he'll always tell me, you're fine. Just go, enjoy the time. You're fine. But, yeah, it's always in my head. It's hard to shut it off.

[A]

What have been some of the most meaningful moments and some of the harder ones of just being in this role, this caregiving role?

[B]

The hardest is when she tells me that, you know, she's ready to die, she's ready for God to take her, that she's lived long enough and she wants to die. And that's heartbreaking. Very heartbreaking. But then on the flip side, the rewarding part is her thanking me. And I know, like, I know in my heart that she is so thankful, and I'm thankful because she's thankful.

[A]

After 11 years as a character, Melissa's life and perspective are profoundly different. What have you learned from her as a role model?

[B]

I've learned to be strong. I really have. Yeah, Strong, polite. And patience. She's. She's given me my patience. Honestly, I can say 11 years ago, I didn't have as much patience as I do now.

[A]

To understand the psychological landscape that caregivers like Melissa navigate, I spoke with Marie Cuqueur, a clinical social worker and program director at McLean Hospital who specializes in dementia caregiver services. Marie works daily with families experiencing what she calls the long goodbye, the gradual loss of a loved one while they're still physically present. Her insight helps illuminate why caregiving for those with memory loss is unlike any other form of caregiving and why it takes such a profound toll on those who provide it.

[C]

The programs that I run focus on dementia caregivers, but really, the crux of the groups that we run are focusing on the emotional experience of dementia caregivers, of really just how hard it is and how those emotions can even seem to make what would have been. Maybe logical or practical decisions are actually can become fraught with the ways that they maybe kick up feelings of guilt or feelings of loss from caregivers. And we find that in these groups, when people are emotionally supported, it in fact transforms some of their experience to make those decisions a bit easier and a bit clearer.

[A]

Marie says dementia caregiving is unlike any other kind because the loss it brings is ongoing and complex.

[C]

One of the hardest parts of dementia caregiving is the experience of loss. So we have both their loved one who is losing their abilities, maybe to speak, but also to perform tasks like planning and making good decisions, and even their flexibility. They might find someone with dementia who is more irritable. And so this really changes the kind of relationship that the caregiver has with their person with dementia. And these are not only losses in the moment that are frustrating because dementia is a degenerative terminal illness. There's the anticipatory losses that come about of, is this the last time we're going to be able to blink? So we have both the ambiguous losses of my loved ones very much here, and yet they're not the same kind of person they were. But we have this other layer of what we'd call disenfranchised loss.

[A]

Unlike other kinds of grief, dementia caregiving rarely comes with the community support or recognition families need.

[C]

You know, if someone's loved one passes away, hopefully in a community, there are people showing up with casseroles or, you know, a grieving card. But with this, where it's so hard to perceive these losses that there's no way for kind of our communities to help someone through the grieving process in the same kind of ways we have with other losses. And so what ends up happening is that the caregiver, as they're adding more and more to their plate in terms of responsibilities, they also may very commonly experience more and more kind of withdrawal, feeling more alone. And this adds to another toll on the caregiver.

[A]

The toll it takes on health is undeniable, and it shows up in both the body and the mind.

[C]

We have a lot of data to support the finding that being a dementia caregiver, even when you control for things like age and sex and other health concerns, dementia caregiving has a higher rate of quite a number of other negative health outcomes. Things like chronic disease, high blood pressure, even Cancer. And that's higher than even folks like them who are caregiving for someone that doesn't have dementia, and much higher for the same controlled population who are not caregivers at all. And this can sound just like statistics, but I have to tell you, Francis, in my work, these statistics become personalized. And I've seen caregivers myself and even folks in our programs who have unfortunately had more incidences of new onset of some of these diseases and conditions or more complications. And unfortunately we've even had caregivers who have passed away before their loved ones. Dementia.

[A]

Wow, that's something I haven't heard of. I don't think a lot of people understand the correlation. Right. You sort of described it as almost a 247 kind of job. What does that kind of constant responsibility do to someone over time?

[C]

When I see the manifestation of some of these chronic diseases or high blood pressure, would this not be that the body kind of crying out to say this is actually too much, it's too heavy. And it's not that a caregiver is somehow not enough, but in fact, you know, in our society we take care of a lot of people who can't feed themselves, who can't walk, have trouble toileting, who can't really express their emotional needs, but they're called babies. And we have a whole infrastructure societally of setting up lots of daycares. We have, you know, babysitters, we have nannies. And that is an imperfect system, but it is so much more well established than what we have for folks with dementia. And right now, as it stands, is that even though society helped people stay older, it then falls on the individual families and sometimes an individual caregiver to care for that person who has stayed alive. This is a success. And yet we don't have the societal structures to help people hold this. And so what we see is the individual caregivers bodies are crying out with these chronic diseases and conditions that say this is too much for one person to handle, because it is. We were never supposed to be like this.

[A]

A caregiver can spend every hour of the day with someone they love, yet still feel deeply alone.

[C]

That's in part because the brain of someone with dementia is in fact kind of living in a different reality. If I tell you something, it's three o' clock and then two minutes later you asked me what time it is. We're not sharing a reality. And as a human brain, we need to. We are social creatures that need to share a reality with someone else. And so if I Continually am not sharing a reality. It's like that part of my brain is not being fed. Loneliness is like hunger or thirst. It's lacking what it needs. And so when a caregiver's brain is kind of starving for social connection. So we find dementia caregivers not only feeling lonely, but then feeling like they are under resourced for those social draws, like they run out of empathy.

[A]

For Marie, the strongest medicine is community. When caregivers open up about loneliness, grief and guilt, they often find relief in being seen.

[C]

They can say, oh, you get what I'm talking about. When peers give some feedback of both first their recognition that I know what you're going through, or I've been there, all of a sudden, that loneliness and that sense of loss of your loved one becomes a sense of gain and connection with other peers who are also dementia caregivers, which is that kind of nourishment, social nourishment that we're lacking sometimes in the dementia caregiving relationship. And so from those bonds that happen, the dementia caregivers can feel more fortified and then start to trust, really instincts of as they're making a decision on behalf of the person with dementia, which you think about, that is not a natural role for most caregivers because they were either a spouse where those decisions were made mutually, or you think about an adult child making a decision for their parent that kind of reverses the relationship between the parent and child. Now the child is making decisions for the parent, and so it really compounds that emotional hurt of losing their person. And my goodness, like that is a feeling of loss and ambiguity.

[A]

Ambiguous loss is a form of grief many caregivers experience even while their loved one is still physically with us. This is what is called the long goodbye.

[C]

So ambiguous loss, in this case with dementia caregiving, is where the person is physically present but psychologically unpredictably absent, because sometimes they're there and sometimes they're not.

[A]

Unlike other losses, dementia caregiving offers no clear ending. The grief stretches on without finality or closure.

[C]

When someone dies because there's a finality to the loss and bereavement, which has its own weight and difficulty, but when they are physically present but then psychologically absent, psychologically hard to connect with, or actually even in the case of dementia, sometimes actively pushing us away or accusing us of something, then they are both lost to us in our relationship, but we still have to care for them. And so we're really in this push and pull that sometimes dementia caregivers will say, I almost feel like, do I wish my person were not here because it would be easier to accept than this back and forth and in ambiguity. And then they feel terribly guilty because they do not wish that their loved one is not here. But it feels like, you know, a clear decision that I either care for my loved one or I don't. I'm either connected to them or I'm not. You know, that's. That black and white is almost always easier than gray. And what we're doing with dementia caregivers and the work we do with them is really to be more comfortable with that gray, to accept that dual reality. That is two things at the same time.

[A]

Navigating this in between kind of grief while also managing the endless demands of caregiving can feel overwhelming. And when the weight of stress and sorrow piles up, burnout often follows.

[C]

This is a public health issue. This is not an individual not being enough issue or even a family not being enough issue. But what we often see for folks who are heading towards that path of burnout are they'll notice it even in themselves, of feeling like, I can't believe I'm acting like this towards my mother, towards my spouse. And so it becomes not just an issue of this is really hard, but actually a turning inward onto oneself of I'm not enough. You could see folks often having this kind of dragging around the feeling of dread during the day. They wake up and they're feeling like, I don't know if I can do this another day.

[A]

Yeah.

[C]

We often find people withdrawing further away from things that have been important to them, long standing relationships or activities, and not just because they don't have time, but they're even feeling that low motivation. I don't feel like I can do it. Certainly there are cases in which caregivers are turning to other ways to kind of try to self soothe, like substances, alcohol or other drugs. Can find folks who are maybe having concerns about their eating as well, eating too much or eating too little. If we think about being held up in our life, we have many strings like good nutrition, social support. And when we start to see that those threads are kind of being snipped one by one or even, you know, in rapid succession, then we, we're starting to really worry about a caregiver's own well being, of, of this being sustainable.

[A]

So how do you help them start putting themselves back into the picture without feeling that shame or that selfishness?

[C]

Without feeling that shame. That's, that's not my bar, Francis. My bar is to say, let's try an experiment. It's having. You said your neighbor might offer to come over to watch your loved one. What if we do that one time and we see what happens and some people will do it one time? 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.

[A]

At a systems level, Marie sees two crucial needs to solve this public health crisis of caregiving.

[C]

One is more and more opportunities for dementia caregivers to connect with each other through offerings, support groups. And the other real thing is offering concrete opportunities for dementia caregivers to have a break. So respite options, be them day programs or in home health, those would be those opportunities. So the caregivers can both give themselves permission through that peer support, but then have real ways to do other things with their lives, to go and see people, to complete tasks they need to do, or just to be on their own, take a nap.

[A]

Marie encourages families to release the pressure of perfection and instead notice gradual progress.

[C]

We live in a dualistic world where two things are true. The first thing that's true is dementia is, you know, undeniably tragic. And so give your space for that and find the emotional comfort that you need. It's tragic and I want to leave out open the opportunity to find the beauty in this, in that for all the ways in which your loved one may be leaving you, thinking about those as also invitations for you to take on some of those roles that your loved one, you know, held for you. They were the social one. What if that was actually them modeling for you for all these years of how to get out there and be connected with people? And this is your invitation to take up that mantle and little by little, month by month, to become more of those good things that your loved one embodied for you and to do that in a community. And that's the invitation to really forge those bonds with other people, to become more yourself in community.

[A]

I think that's beautiful and well said. So as you wrap up, I know that there are going to be a lot of listeners that are very interested about their own cognitive health or that of their aging parents. What early signs should they be aware of?

[C]

There is some natural ways in which memory and the aging dissipates in small ways, but things like confusion about what things are used for or difficulty planning, these are things that, you know, they may be signs of cognitive impairment as well as that emotional instability of becoming more irritable to things I often See couples where once a diagnosis is made, they look back, they're like, oh, we were having a lot of these, like kind of more arguing and things. And so getting an early screen, which is something you can just do at your primary care provider's office, it can be like a five minute screening, which even if it doesn't reveal cognitive impairment, it at least can give a baseline so that over time you track. How does this go? What we've found over years and years of studies is that some of the what we call behavioral psychological symptoms of dementia, things like depression, withdrawal, anxiety, even paranoid delusions, even things like suicidal ideation, those can show up years before dementia diagnosis is made. And what looks like a more emotional instability may actually have been the beginnings of cognitive impairment, since emotions are in our brains just like our memories are. And so while it's not necessarily that those things are the signs of cognitive impairment, those are things that people don't always think about that could be. And so certainly in a new onset in older age of emotional difficulties could.

[A]

Be one thing to be screened out of the challenges. Melissa is creating something meaningful. Together with her sister, she's making bracelets, small symbols of love and resilience that raise funds for Alzheimer's research and caregiver support.

[B]

My sister is the owner, president of a bracelet company out in Cape Cod and teacher Zell's bracelets. And I'm wearing some of hers now. But she has a line called help. And the line help helps give back. So I have been working with her team of creating two beautiful bracelets. And 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. And I'm hoping to give back to two beautiful organizations by every bracelet that's sold.

[A]

Beautiful. I love that mission.

[B]

And one of the organizations that I'm hoping to do for caregivers is a beautiful thing. They give grants to the caregiver so that they can have some quality time for themselves and do what they want to do with that grant.

[A]

Melissa's journey with Nana continues day by day with its mixture of challenges and small victories. Through sharing their story, she's created something remarkable. A community of caregivers who support each other through one of life's most difficult passages. What both Melissa and Marie teach us is that while dementor caregiving may be one of life's most challenging experiences, it doesn't have to be a journey taken alone, whether through support groups, online communities, or simply the courage to ask for help. Connection becomes the lifeline that sustains both caregivers and the loved ones. Their stories remind us that 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. As families across the country navigate similar journeys, stories like Melissa and Nana's offer hope and practical wisdom that you don't have to be perfect to be enough, that asking for help is not giving up, and that even in the midst of loss, there can be profound meaning. I'm Frances Leese and this has been Turning Point. Thank you for listening and visit globe.com turningpoints One word for more information on mental health care and resources. Turningpoints Season 5 is produced by Tufts Health Plan, a 0.32 health company, and a Studio B team at Boston Globe Media in partnership with Bard People. With a commitment to personal service, Tufts Health Plan provides quality coverage and dedicated support to help guide and empower healthier lives. That's all for this episode. Stay healthy in mind and spirit.