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Tended: Transcript

Anita Rao 0:02
The thing about witnessing someone lose their memory is sometimes you don't realize what's been lost until it's long gone. That was my experience in the last few years of my Nana's life. I saw her in person for the last time in 2019. During that visit, she struggled to remember some of the facts of my life, like where I lived or what I did for work, but she could still engage with me pretty normally. And her spunk was there, albeit under some layers of grief. Over the next few years, separated by an ocean, further health complications and a pandemic, our communication was minimal, but I knew I'd hear from her on my birthday. For 30-some years she had sent me a card every December. While I did get cards in those last few years of her life, they were from my aunts on my Nana's behalf, as she was no longer able to write anything, even her own name. My Nana didn't have a dementia diagnosis. But her memory issues mixed with other health complications meant that she required around-the-clock care. My mom's six siblings created a schedule of overnight shifts and daytime support. For years they balanced meeting her acute needs with the persistent grief of watching a fierce matriarch become a different version of herself. This is Embodied. I'm Anita Rao.

Gerald Lazarus 1:42
My wife has dementia. And the course of her disease has been over 10 years. I'm doing everything that's humanly possible to take care of her. Because I know if the roles were reversed, she would do the same thing for me, except better.

Anita Rao 2:04
That's Dr. Gerald Lazarus, one of the more than 11 million adults in this country who are unpaid caregivers for people with Alzheimer's or other dementias. These folks provide billions of hours of care that comes with rewards and costs, financially and emotionally. A large portion of those caregivers are young millennials like Jacquelyn Revere. Jacquelyn began caring for her grandmother and mother when she was 29 and they each were at different stages of Alzheimer's disease. Jacquelyn is with me now. Hey, welcome to the show.

Jacquelyn Revere 2:38
Hi, how are you?

Anita Rao 2:40
Good. And I just want to do a quick note of clarification before we dive in: dementia is an umbrella term that we're going to be using. It refers to the steady decline of cognitive abilities related to memory, reasoning and thinking, and there are many kinds of dementia, Alzheimer's being the most common type. So back in 2016, you were living in New York City, you had landed your dream job in television writing. And then one day you got a phone call from a family friend about your mom and grandmother. Can you take us back to that day and what happened?

Jacquelyn Revere 3:14
Sure. Prior to starting, I just like to tell people that I have a stutter, and so you guys will hear that. But I was on the subway, heading to a show to see a friend perform. And my mother's friend called me while I was on the train, and I stepped off and much of what I remember her saying is, "Something is wrong with your mom, you need to fly home." And that was on a Saturday night. And I flew home on Thursday.

Anita Rao 3:53
So when you got home, you had some huge new responsibilities. And I can imagine there was also a lot of grief about the life that you left behind. What kind of loss were you experiencing in that transition?

Jacquelyn Revere 4:06
It was a mixture of everything. I walked into a house that my grandmother and my mom had bought when I was in high school and they kept the house impeccable. It was perfect. But I came home to spoiled food in the fridge, the lawn was not maintained. But more than that, we had a notice from the mortgage company saying that the mortgage hadn't been paid for two months, and they were heading towards forclosure. But then on top of that, I knew that my grandmother had dementia, but I did not know what that meant. And so see seeing it firsthand. I mean, she did not know who I was at all. And she immediately said, "I am not your grandmother. Don't call me that." And so there was mourning soon as I walked inside.

Anita Rao 5:14
When did you realize that you were going to need to stay and care for your family long-term? I know you initially took off like 21 days of work. And you were kind of hoping to go home and get things sorted and return back to your life in New York City. How did you realize that you needed to stay and provide care?

Jacquelyn Revere 5:31
I realized it fairly quickly. My mother had been fired. And then on top of that her health insurance had lapsed. And so just trying to figure out her side of it, I knew would take more than 21 days. And so I knew immediately, I was like, "Oh, this is going to be the long haul for sure."

Anita Rao 6:01
I know that there is a big learning curve in caregiving for folks with memory loss. And each stage is really different. Your grandmother was pretty advanced in her Alzheimer's when you got home. Your mom was in earlier stages. What were some of the behaviors that were most challenging for you as a caregiver?

Jacquelyn Revere 6:22
Because I walked into a home of two people who had a long history, I think it was more so than just the dementia that I was miti-mitigating. I think the hardest part was actually figuring out how to maintain a sense of calm. My grandmother was hallucinating at that point. And so she would see and hear things that weren't there. But my mother wasn't able to realize that what she was saying wasn't actually happening. And so the behaviors aren't actually the hard part. It was managing two people who had symptoms but could not recognize them in each other.

Anita Rao 7:27
There was this long history of tension. And I know, when you're negotiating and having conversations with people with memory loss, there's ways that kind of these buried emotions come up in unexpected ways in their behavior. How did that affect your mental health, kind of dealing with that tension, as well as this new set of responsibilities?

Jacquelyn Revere 7:53
It was bad. It was bad. I feel like I lost my mind for a short amount of time. More so because I had no one holding my hand, no one was telling me what to do. And I just - I don't think that there's anyone who would have known either, you know, walking in to a house of two people who have it. You're setting up doctor's appointments, but you're also listening to them tell stories that you cannot see. You're also trying to understand if this will happen to you, you know, not sure what started it, how it started. And so it was just a maze that I was going through myself, and I hit the dead end over and over and over again.

Anita Rao 8:50
You mentioned that kind of witnessing people telling stories and observing things that you don't see, that aren't there. And you've talked about being a caregiver to someone with dementia is kind of feeling like you're living in a different dimension with someone that you've known for your whole life. Can you talk more about that and the dimensions that you had to learn to exist in to be a good caregiver to them?

Jacquelyn Revere 9:13
I think so much of pacifying the person with dementia is becoming very agreeable to the world that they live in. And so so much of that was me, living in the world with my mom. If she felt that someone walking down the street was not nice, then I would say, "You know what, that person is not nice. You are absolutely right." If she felt that I wasn't her daughter, I am like, "You know what, let's find out where she is." And so you have to step into their world and accept the truths that they have, which are also hurtful.

Anita Rao 10:01
About a year after you came home, your grandmother passed away, in 2017. How did her death impact you and your mom?

Jacquelyn Revere 10:11
My grandmother's death, on the outside, I think had a positive impact because I couldn't have continued caring for two people. I was burning at both ends. And at the time she passed, I was completely numb. I don't even think I mourned her until years later. But her passing gave me the capacity to find a center for my mom, where she could socialize and meet people and have that time where she wasn't with me 24/7. And so, it sort of led us set up a life that my mom and I could start living where we could thrive, whereas when I was caring for the both of them, it was just too much overall. It also forced me to figure out how to manage my mom's life and also slowly start setting up what my life could look like now.

Anita Rao 11:38
After one and a half years caring for both her mother and grandmother, Jacquelyn was at yet another crossroads, which required new strategies emotionally and financially. We're gonna get back to that story after a quick break.

Welcome back to Embodied. I'm Anita Rao, and you're listening to "Tended," our show about caregiving for a loved one with dementia. Jacquelyn Revere started caretaking for her mom and grandmother when she was 29, and they were both living with different stages of Alzheimer's disease. We left off charting Jacquelyn's move back home and the financial, personal and emotional challenges she had to juggle when she started caregiving full-time. A few years into her caregiving journey, the pandemic hit, and all of those challenges were amplified. With folks sheltering at home, it became hard for Jacquelyn to find community. So she turned to social media and started sharing her story online.

Jacquelyn Revere from TikTok 12:44
A day in the life of an Alzheimer's family caregiver. How come you smiling so big? How come you cheesin like that?

Lynn from TikTok
Because.

Jacquelyn Revere from TikTok 12:53
Because what? Because you're happy?

Lynn from TikTok 12:57

Yes.

Jacquelyn Revere from TikTok
Yeah. Okay, that's good.

Jacquelyn Revere from TikTok 13:00
Ooh, this outfit cute. You look cute.

Lynn from TikTok 13:04
I am cute.

Jacquelyn Revere from TikTok 13:04
Aaaaaaay.

Jacquelyn Revere from TikTok 13:07
I'm so happy. I'm so happy. We're happy. Happy Tuesday!

Anita Rao 13:16
TikTok videos like that one of Jacquelyn and her mom Lynn garnered millions of views and likes from folks all around the world. So Jacquelyn, I want to talk with you more about this TikTok account, starting with the handle. It's called "Mom of my Mom," can you tell me the story behind that name?

Jacquelyn Revere 13:19
My mom started calling me "mom." And it caught me off guard. I was like, "Oh, is this normal? No?" But one day, she was in the living room. And she was looking at a photo that we had on the wall. And it was a photo of her at 28 when she had me, and it was a photo of me as a baby. And she pointed at herself, and she said, "That's me." And then she pointed to the baby photo of me and said, "And that's my mom." And I was like, "Oh, you're right." Like she had been calling me "mom." And she had connected somehow that I'm still her child. But I am the role of mom for her also.

Anita Rao 14:42
I love how you talk about the shifting of those roles. And I think that that's that's a common experience people have when they become a caretaker for their parental figure, but I can imagine that there were times when you also really wanted and needed to be mothered. Where did you turn for that kind of support as your mom was less able to give it to you?

Jacquelyn Revere 15:04
Oh my goodness, ha. You, you expect other people to show up. But usually the people that you think will show up, don't. And there are a few people who actually mothered, me, but so much of it came from supporters, people who are watching us every day, they would check in on me and just say, "You're doing a good job. I'm so proud of you." I get teary eyed like, thinking about it now, because that was what I needed most in that time. And that support came from people who I didn't even know.

Anita Rao 15:52
I can see why people connected to you two so strongly, because the bond between the two of you and the way you show up in these videos is so dynamic. And so many of them are filled with so much joy. You're listening to music or dancing together, you're, you're singing, and it seems like music was really an important tool of connection for the two of you. How was that something that became a tool in your caregiving?

Jacquelyn Revere 16:17
So my mom, she told stories with songs. And so one time when I was a child, we were riding in her car, and one of her favorite songs came on, and she immediately started to tear up, then she told me the story behind that song for her. And so from a young age, I knew how impactful music was for her. And that's how it became such a big part of how I cared for her is like she, she would just always tell me stories that were related to songs.

Anita Rao 17:14
I love that. And I love the openness that you bring to talking about her relationship with music, and as well as just kind of all of the other realities of caregiving that are less visible to outsiders like finances, which you mentioned a little bit earlier. There really is very little infrastructure to support family caregivers of folks with Alzheimer's and other dementias. A lot of the costs are borne by those caregivers. So what was the financial landscape like for you and your family, and how did you make it work?

Jacquelyn Revere 17:47
Yeah, so once my grandmother passed, we no longer had her pension. And so soon as she passed, we had no insurance because she had also lapsed on paying it. No one was staying on top of that sort of stuff. I had moved my mom upstairs in the room that my grandmother had stayed in. And so her and I shared a bed, and we rented rooms out downstairs. And that's how I was able to maintain caring for her 24/7 was through the help of renters. And had we not had that I don't know what I would have done if I'm honest, because it is so expensive. There's just so many impromptu things that happen when you're caring for someone that having a regular nine-to-five, I don't think I could have managed.

Anita Rao 18:59
You were in your late 20s, early 30s in this, this era of caregiving, and this is a time when so many people are going through, you know, career changes, maybe starting new relationships, maybe starting a family. You're living in this very different world as a caregiver. How did that dissonance affect your friendships with other folks your age?

Jacquelyn Revere 19:20
Oh, there are some people who I'm not friends with still. I hated it. Having to give up my lifelong dreams were hard. But I think on top of that with social media, you're watching people pursue them and then they're getting married and starting families, and at the height of it all, caring for someone with dementia is so heartbreaking at times that it can feel like punishment. And punishment for what, I don't know. But it just - it feels like a very cruel joke. And it's years of a cruel joke. I had unfollowed everyone, and your friends can't relate, and the ones who try get compassion fatigue. And so if you're not in community with other people who are going through the exact same thing, then it can be a very lonely world.

Anita Rao 20:36
In March of 22, your mom had a heart attack, and a number of days later died of heart failure. But since that time you have gotten back into the world of TV writing, you're still thinking a lot about care and caregiving in the wake of her death. What are the conversations about caregiving that you really want people to be having maybe through the vehicle of your show?

Jacquelyn Revere 21:04
I think one of the most important themes that I speak about are, we need to familiarize ourselves with the entire circle that life is. I think end-of-life care can be so lonely for those who are caring for someone because people avoid it. And they avoid it until they don't have to, and as soon as they don't have to, it's when it's too late. And so I just want these to be conversations that we have as a society, that we are planning what the end of our lives look like now. And so these are the conversations that I'm hoping to have more of now.

Anita Rao 21:59
I'd love to end hearing your reflections on how this experience of being a caregiver and being so up close to someone with dementia and memory loss changed your relationship to your own mind and your own memories.

Jacquelyn Revere 22:19
I think one thing I can say is that I I absolutely cherish the workings of my mind now in a way that I never thought about. I recently learned how to roller skate. And I could feel my mind like, learning. Something like that I would have been frustrated by, but now it's something that I find so interesting. I think on top of that, this experience has changed how I see everything, how I see relationships, how I form them, how I approach people, because you never know what someone is going through. It's, it's made me very aware and in tune with the people who are like, barely making it by. And it's given me a level of compassion that I did not have. So it's, it's changed me overall. But it's absolutely changed the way that I cherish the muscle that my mind is.

Anita Rao 23:43
I've been talking with caregiver and writer Jacquelyn Revere. She's the creator behind the TikTok and Instagram accounts "Mom of my Mom." Jacquelyn, thank you so much for the conversation.

Jacquelyn Revere 23:53
Thank you for having me.

Patti LaFleur 23:57
So often people in my life and my mom's life just didn't show up. They didn't know how to talk to her. They didn't know how to help. They didn't know how to approach her or have a conversation. So they just avoided her. And I learned the power in my ability to just show up. And I refuse to let her dementia diagnosis be a death sentence. I knew she was going to pass. It's a terminal illness, there is no cure. But it didn't mean that we couldn't find joy and love and laughter and fun every single day.

Alma Valencia 24:48
Something that I have learned along this journey is the level of patience that one develops. Now I have always been considered a patient person, I received that compliment quite often. But the level of patience it requires to take care of somebody that is living with dementia is a whole other experience.

Kris McCabe 25:18
I have learned that I am capable of doing what feels impossible. I have strength inside of me that I didn't know I possessed. My whole life changed since being a caregiver, but it hasn't been for the worst. I was able to get sober from alcohol and really focus on things that are important in life. I learned to appreciate every moment and create joy when I feel there is none.

Anita Rao 25:49
Like Patti, Alma and Kris, KC Mehta has also found joy and caretaking for his wife, Sumi, who was diagnosed with Alzheimer's disease in 2013. In the past 10 years, as Sumi's disease has progressed, KC has documented their story through journal entries that he published into a book called "My Journey with Sumi." KC is with me now. Hey, welcome to Embodied.

KC Mehta 26:13
Thank you.

Anita Rao 26:14
So you've been married to your wife, Sumi, for 50 years. You raised two children together. Tell us more about her personality and what attracted you to her.

KC Mehta 26:26
Well, all throughout our lives, she has been very good wife to me. She was very easy to please. Her personality was very, I would say, mild. And you know, she wouldn't get angry at a lot of things. Very smiling. And I like to tell this story. I worked in automotive industry. And we used to take a course by "How to Win Friends and Influence People."

Anita Rao 26:57
Oh yeah, Dale Carnegie.

KC Mehta 27:00
And in the takeaway from his book, were three C's. Never complain, never condemn and never criticize. And even after taking the course, I had difficulty following those three C's, but Sumi followed those three C's without even taking those, that course throughout her life.

Anita Rao 27:19
I love that.

KC Mehta 27:19
That's what she was, yes.

Anita Rao 27:21
So before Sumi got a formal Alzheimer's diagnosis, she was exhibiting some early signs of dementia. But there was one particular day that was a turning point. And it was after this time that you knew that you really needed to seek professional medical help. Can you take us back to that day and what happened?

KC Mehta 27:41
Yeah. So, as we all know, there are telltale sign of dementia before even you get the actual diagnosis. And I call that pre-diagnosis phase. And so Sumi was exhibiting those type of behavior. But the day which was the most difficult day was, she was going to a friend's place for afternoon luncheon, which was about 20 miles from our home. And she had gone there many times. But that particular day, she got lost. She called me about a mile away from my friend's house. And I tried to give direction, but she was not able to follow the direction. And she was very confused. And she just stopped listening. And I think her phone, she's turned it off. And I did not know what to do. I called my friends and they started looking for her. But that was, you know, that was not working out. I called police. And I called my children in Los Angeles, "This is what is happening." And I was just at home, nothing I could do. And she came home after five hours. And to - you know, when she came home, I didn't have guts to ask her. She was so distraught that even to this day, I don't know what, where she spent those five hours.

Anita Rao 28:59
That sounds really scary. And I know that's a big transition to kind of make make the step to go to the appointment and kind of confront the symptoms that you're seeing. So you, you did eventually get a formal diagnosis. And in the years as Sumi's symptoms began to progress, you eventually decided to stop working and transition to caring full-time. How did you come to that decision?

KC Mehta 29:26
So I was, I was working in the automotive industry. I retired in 2007. After that, I did some consulting work with local company as well as state of Michigan for Economic Development Corporation. And the time came where Sumi was not doing as well as she was doing in the early years, from 2013 to 2015. And time came I said, "Okay, maybe I need to focus more on her and not as much on my career." And I decided to become a full-time care partner. I call care partner rather than caregiver because I'm her partner.

Anita Rao 30:05
I want to talk more about that distinction. You have worked alongside a lot of paid caregivers. Tell me more about the distinction you make between being a care partner.

KC Mehta 30:17
I've been very fortunate to have part-time caregivers in our house in the morning and in the evening. But the fact of the life is, everyone has life and they move on. So the caregivers, they have their own life, they do this job. They're very compassionate. Care partner - I am there all the time. I'm 24/7, 365.

Anita Rao 30:41
So with that 24/7 365 you have watched her symptoms, you have adapted and gotten creative. But I'm curious about the emotional connection piece. Right now her Alzheimer's has advanced enough that she's no longer verbal. How do you connect with her emotionally?

KC Mehta 31:03
People think that person with dementia, they are not there anymore, they lose all the functions. But having with her 24/7, there are a lot of bod - body cues you can read, nonverbal cues. She has her own personality. So once you spend time with them, it's like you know, little baby and mother. Baby doesn't speak when they're born, you know, until you know, year, year and half. But mother knows baby's cry. So if Sumi make certain noise, I know what she's looking for. Those are the things I work on.

Anita Rao 31:38
Through years of care-partnering, KC and Sumi have become in sync, with KC often anticipating Sumi's needs well ahead of time. He attributes his foresight and creative problem-solving to his career as an engineer. Take Sumi's meals and her subsequent bowel movements for example. KC has these both down to an exact science. He has created graphs and diagrams charting this phenomena. And y'all know that I'm a daughter of a gastroenterologist, so I just love this. Just ahead, we're gonna hear more about how KC pairs data with care-partnering. We will be right back.

This is Embodied, I'm Anita Rao. As older caregivers age alongside their loved one, they eventually face a crossroads: send their family member to a nursing facility or receive care in home. Earlier you heard from Dr. Gerald Lazarus, whose wife Audrey has been living with dementia for more than 10 years. A few years ago, he had to make the difficult decision about the future of her care.

Gerald Lazarus 33:00
This was really an existential dilemma to me. You know, it was surrendering to the disease. And the neurologist who had taken care of me, looked at me, said, "Gerry, you can't take care of them on your own." He said, "What happens if, when you're alone, she falls and breaks a hip? How are you going to feel? This is a matter of safety." And when she went into skilled nursing, my positive feedback was her smile. If she smiled at me, that was a success. It was Valentine's Day, and the speech therapist had Audrey write a note to me and it said, "Gerry, I love you very much. I am lucky." It was the most important piece of paper I've ever gotten. It sits right by my front door to remind me. It's like the smile. It makes me keep going.

Anita Rao 34:47
Tough decisions arise often when caregiving for someone with Alzheimer's disease and related dementias. For KC Mehta, his engineering background has come in handy as he's worked to respond to his wife's evolving needs. So KC, you mentioned your background as an engineer, and you really brought this creative problem-solving mindset to your work as a care partner. You installed a motion sensor alarm, so that if Sumi tried to get out of bed, the alarm would sound. You changed the bedroom from carpet to hardwood, so that accidents were easier to clean up. How did you balance this problem-solving with the emotions that came up as you watched her symptoms progress?

KC Mehta 35:30
Yes. So in this journey, I said there are two aspects. One is emotional acceptance, because we all are going through this emotional journey. At the same time, there has to be some type of caregiving and creative problem-solving. Because every stage of the disease, there are challenges. I was struggling in the beginning. But a time came, I started to think more deeply, and I realized I needed to get more educated on this disease, because Alzheimer, one has to consider that it's an enemy. So when you're fighting an enemy, you have to know all the tactics of enemy. So by reading all those books, I could know what would happen to her, what, what actions, I need to take care to be an effective care partner. And the conclusion I came up with after reading so many books, was there is no cure for this disease, and only medication which will work is keeping her safe, and love, compassion, mercy and patience. So then, after having those reflection, I said, "Okay, I need to manage my emotions," and I could manage my emotions, if she's well taken care of. Because if she's not anxious, she's not agitated, then if I can keep her calm, maybe my emotions will be calm. Because what happens in this disease, we both reflect each other's emotions. If I'm angry, if I'm upset, then she's agitated. But if I'm calm, then she's calm. So I came to acceptance. And acceptance comes in many, many form, but I came to know, "Okay, things change, nothing is going to be constant." So I came to realize that nothing is permanent, not, no situation is permanent, it will change, then I became more mindful. Mindfulness in the sense, trying to observe what is happening while it is happening and try to understand. So these are the four stages I went through and like sometimes I call them as a short form SARA, S-A-R-A. Sara being shock, A being anger, R being reflection and another A being acceptance. So again, this was the linear progression I went over last 10 years. But this is not a linear process, I could be at an acceptance level, and something could happen, and I could go back into anger. But I would say in last many years, I have been able to control my anger, I haven't gotten angry about the situation or at Sumi. So, so that acceptance has come after a long struggle.

Anita Rao 38:23
You have said that despite you know, having a support group, you have a supportive family and friends, this experience of being a care partner for someone with Alzheimer's can be immensely lonely and isolating. What have you found to be most nourishing in these moments of loneliness that you experience?

KC Mehta 38:45
I believe in self-care, or trying to find time for my own respite. And as we all heard, when we fly, we always hear that put the oxygen mask on you before you help others. And that advice is very valid, I would say, when you are a caregiver or care partner, because if I'm financially strong, if I'm emotionally strong, if I'm physically strong, I can take care of Sumi. So I tried to be maintaining my well-being as priority number one. And another aspect of self-care is I have built up a team of caregivers and some of the friends who would come and relieve me. So I can go and attend, for example, the support group, I can go and attend caregiving art classes, or I can go and learn about powerful tools of caregiving. So this self-care provides me the opportunity to maintain my balance, and journaling and writing my book has been very, very helpful to me. It allows me to increase the awareness of this disease and find, fight the stigma associated within many cultures, and, and second point is it allows me to process in general my thoughts, my emotions, and I'd find it therapeutic. And the last one is my writing should be reflecting. It should be barometer of my own health. That study shows Stanford study, study has shown that 40% of the caregivers, they die before the person they're caring for. So the self-care is very, very important. And those are the things keep me going.

Anita Rao 40:30
I want to bring you to a particular essay that you wrote in your book, you wrote it in 2017. And you're talking about ritual in Hinduism and in caretaking. And in Hinduism, one important ritual is the daily caretaking of devotional statues. So priests will wake them up, they'll bathe them. They'll adorn them, they'll present them with food. And you wrote that while you don't find yourself to be particularly religious, you noticed that you were bringing the same care and attention to the rituals of caring for Sumi. I would love to know how you find and build a spiritual connection in your care work.

KC Mehta 41:13
So again, I think one needs to have few things in place. One thing is that commitment. We've been married for 50 years, you make a commitment, til death do us part, right. So with that commitment, with the law, you, you say, "What other choices I have?" In this particular care-partnering, either you swim or your sink. So I decided to how would I swim? So what you mentioned about, so Sumi, I wake her up. Now I do have some caregivers. They do a lot of bathing and dressing. But at one time, I used to do that. And that's what I wrote in my essay, I wake up my quote unquote, God, Sumi, my god. I bathe her, I dress her, I groom her, I feed her. And one distinction that I've made in that one, that in ritual, which do people do religiously, they don't have to clean their god, but I do have to clean my god sometime also.

Anita Rao 42:19
Well, it's really beautiful. And it shows the level of thought and emotion that you put into your day-to-day caregiving work. You mentioned that you have been able to manage Sumi's care at home so far, how are you thinking about the future of her care at this moment?

KC Mehta 42:38
So we, we heard about the financial part of caregiving. It's very expensive to be taken care of at home. So the way I'm looking at it right now, in Michigan area, I live in Michigan, in our area, it cost about $10,000 a month or $100, $220,000 a year. If I can afford to spend that type of money at home and keep her at home, then my strategy will be keeping her at home. And recently though, since last November, she has been in hospice care at home. Now, hospice does not provide any financial help. But, but I do get a nurse visit, social worker visit and other visit which also provides me connection and help, because there is a team behind, behind Sumi. So my long-term strategy, or the immediate strategy is to keep her at home as long as I can.

Anita Rao 43:41
What are the moments of your life now with Sumi where it's easiest for you to tap into connection with her and joy?

KC Mehta 43:49
While she, she was ever smiling, and she smiles on the cue once in a while, especially when she wakes up. I say, "Can you smile," and she would smile. But she's changing. She's mellowing down. She's not as responsive as she used to be. Two years back, she had a very routine, clockwork-type schedule. She would be in bed for 10 hours from 10 p.m. to 10 a.m. Sleep awake, but she would stay in the bed. Then she would be sitting for about six hours and she'll be walking pacing in the house very safely for about six hours. So time came she would tend to fall and I would put safety gears on her. I went to the local sporting goods. I bought a helmet, I bought the shoulder pad, I bought the hip pad, and I will just put on her, so in case she falls she'll be very safe. So, so far I've been able to keep her safe also. So that schedule now it has changed. Now she's 12 hours in the bed, and she's about 12 hours sitting in the chair.

Anita Rao 44:57
I know that you often get the question, "Does Sumi remember who you are?" And in the past, you've said, "I'm not sure, it doesn't matter, because I know that she is my wife." What are the signs that you get from her that make you feel like she still does remember and is still connected with you?

KC Mehta 45:15
Yes, so now we sleep in a separate room, because what I found is, if sleeping in the same room, whenever she makes some noise or something, I would still monitor in my sleep. And as I cannot do that, I have to have my own quote, unquote, sanity. So I sleep in a different room. But if I'm moving in the - from room to room or my footsteps, she would hear it and she would start making noise. So she knows my presence. She knows physical presence. So something is there. I can't put my hands on it. But she knows my presence. She knows caregiver's presence, and she responds differently to different people. She would obey some of my instructions, and she would ignore those instructions from a caregiver.

Anita Rao 46:04
You've been at this for more than a decade. And as you look back and you reflect, if you could kind of write yourself a love note - yourself in the past - a love note of encouragement or something to think about as you move forward in this journey, what would you say?

KC Mehta 46:23
Well, okay, so as I mentioned, there are two aspects of caregiving, emotional acceptance and creative problem-solving. And when you do this, you get transformed as a person. So what I was 10 years ago, what I was five years ago and what I'm today, I'm a different person, I'm a different man. And I find myself self-healed, or self-healing, my stress, anxiety, anger have been very much in control. And it so happens that my blood pressure medications, I've reduced them in half, what used to be a few years back. Now, again, that could be many factors. But again, you know, taking care of her, I am at peace with myself.

Anita Rao 47:15
KC, it has been so wonderful to have this conversation with you. Thank you so much.

KC Mehta 47:20
My pleasure. Do we have time, about two minutes? Because me as a care partner, I've said something, but if Sumi were to say something, what would she say? And there is a anonymous poem written by unknown author. And if I could read that?

Anita Rao 47:40
Yeah, of course.

KC Mehta 47:47
Do not ask me to remember,
Don't try to make me understand,
Let me rest and know you are with me,
Kiss my cheek and hold my hand.
I'm confused beyond your concept,
I am sad and sick and lost.
All I know is that I need you
To be with me at all cost.
Do not lose your patience with me,
Do not scold or curse or cry.
I can't help the way I'm acting,
Can't be different though I try.
Just remember that I need you,
That the best of me is gone,
Please don't fail to stand beside me,
Love me til my life is done.

Anita Rao 48:45
Thank you so much for reading that. That's really beautiful.

KC Mehta 48:51
Thank you.

Anita Rao 48:53
Thank you so much. I really really appreciate that. That was, that was a gift for you to read that for us. Thank you.

Embodied is a production of North Carolina Public Radio-WUNC, a listener-supported station. If you want to lend your support to this podcast, consider a contribution at wunc.org now. Special thanks to Patti LaFleur, Alma Valencia, Kris McCabe and Gerald Lazarus for contributing to this week's show. We appreciate you. This episode was produced by Paige Miranda and edited by Amanda Magnus. Kaia Findlay also produces for our show, Jenni Lawson is our sound engineer and Quilla wrote our theme music If you liked this episode or any other of Embodied, we would love for you to tell us about it. Write a review on the app that you're listening to this podcast on right now and let us know why you listen. Another great way to support us is by texting your favorite episode to a friend. We so appreciate it. Until next time, I'm Anita Rao, taking on the taboo with you.

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