Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
The Grief Backpack: Katie Brandt on Caregiving, FTD, and Finding Strength
41 Plays3 months ago
In this powerful episode of Engaging Aging, we sit down with Katie Brandt, nationally recognized advocate and Director of Caregiving & Education at the MGH Frontotemporal Disorders Unit.
Katie shares her deeply personal journey—caring for a husband with frontotemporal dementia (FTD), a father with Alzheimer’s disease, and raising her young son—all while navigating profound loss. She opens up about carrying what she calls the “grief backpack,” why love should guide every care decision, and the importance of building a strong support system.
This conversation is a reminder that caregivers are never alone, and that even in the hardest seasons, joy and grief can coexist.
✨ Inside this episode:
- What every family should do right after a diagnosis
- Why promises around care should be rooted in love, not guilt
- Practical advocacy tips: documenting changes, speaking up, and getting connected with the right professionals
- How grief and happiness can exist side-by-side, and what it means to care for yourself as well as your loved one
🔗 Helpful Resources & Links
- Learn more about Katie Brandt: katibrandt.org | Instagram: @katibrand6 | From Care to Care Podcast (Apple/Spotify)
- The Association for Frontotemporal Degeneration (AFTD): theaftd.org
- Alzheimer’s Association: alz.org | 24/7 Helpline: 1-800-272-3900
- MGH Frontotemporal Disorders Unit: massgeneral.org/neurology/ftd-unit
Recommended
Transcript
Katie's Caregiving Journey Begins
00:00:00
Speaker
This week on Engaging Aging, we welcome a truly remarkable guest, Katie Brandt. Katie is a nationally recognized advocate, speaker, and educator whose life has been profoundly shaped by caregiving.
00:00:14
Speaker
Katie's journey began at a young age, first caring for her husband who was diagnosed with frontal temporal dementia. FTD, and later for her father who still lives with us today with Alzheimer's disease.
Grief, Resilience, and Community in Caregiving
00:00:27
Speaker
In our conversation, Katie opens her heart about the weight of carrying grief while still showing up for those who need her most, how to find the right support system and recognize when to bring in the professionals, and the importance of filling your own bucket so that you can continue to give and support those that you are caring for.
00:00:48
Speaker
And also she dives deep into the lessons that she learned about resilience, community, and honoring her loved ones through advocacy.
Role at MGH and FTD Awareness
00:00:56
Speaker
Katie is now the Director of Caregiving and Education at the Frontal Temporal Disorders Unit at Massachusetts General Hospital.
00:01:04
Speaker
where she helps families navigate the uncharted waters of rare dementias with compassion and clarity. And because this month is FTD Awareness Month, there is no better way to shine a light on the disease that caregivers carrying its heavy impact and the power of sharing stories like Katie's.
Introduction to Engaging Aging Podcast
00:01:24
Speaker
This is truly a powerful moving conversation about grief, love, finding your way forward. And we cannot wait for you to hear this episode. Enjoy. Welcome to Engaging Aging. I'm Erin DeCarlo. And I'm Lauren Watts.
00:01:39
Speaker
We believe life gets richer with age, and we're here to prove it. We bring you real conversations about aging well, living fully, and navigating this journey with confidence.
00:01:50
Speaker
So let's dive in, because aging isn't something to endure, it's something to embrace.
Isolation and Elevating Caregiver Voices
00:01:58
Speaker
All right. Welcome back. We are in the studio today. I'm so humbled and honored to be welcoming Katie Brandt. Katie, we have had multiple conversations with you, erin and i and this time has just finally come where we can come here and have an open conversation.
00:02:15
Speaker
We'd love to just start off by hearing a little bit about your story and how you kind of went through those different phases of life. Well, thank you, Lauren. I'm honored to be here and thank you for giving me the space.
00:02:31
Speaker
um A lot of times I think about my work now is about elevating, illuminating, shining a spotlight on those authentic voices because when I was in my deepest days of caregiving, i felt like no one could hear me and I felt very isolated. so a lot of my work now is about voice.
00:02:54
Speaker
um But yes, so today I'm the director of caregiver support services and public relations for the Massachusetts General Hospital's Frontal Temporal Disorders Unit.
Personal Experience with FTD
00:03:07
Speaker
um I'm also the CEO and founder of Katie Brand Advocacy, which is a consultancy that works with companies, organizations, individuals around elevating the voice of lived experience and thinking about how we can connect with communities impacted by rare disease and dementia ah to bring us closer to the cure of tomorrow.
00:03:31
Speaker
But um really why I'm here, you know, i i always say I didn't come to my job through a job description, um but through a personal experience. um I,
00:03:45
Speaker
think a lot about my husband, my late husband, Mike, and how our love story began.
Early Life and Marriage with Mike
00:03:52
Speaker
we met as college kids. ah We got married just a couple of months after graduation. oh Yes. And ah Mike at the time did not have a job.
00:04:05
Speaker
um I was working for a local early intervention program ah with kiddos with developmental delays and disabilities. And so i was the only one of us working. We had an old Buick that my parents gave us and furniture from my mimei's house. But, know, we were really excited to start our lives together. We earned our master's degrees and um Mike became a theology teacher at a local Catholic high school.
00:04:37
Speaker
i was working for the child welfare agency near where we lived. And then just after our fifth wedding anniversary, we found out that our love was too big for just two people, and our son Noah was on the way.
Behavioral Changes Leading to FTD Diagnosis
00:04:52
Speaker
And that sort of where my story started to have what I think of as the unexpected parts. You know, Mike started to be a different guy. The sweet, smart, caring, attentive husband that I had was withdrawn.
00:05:15
Speaker
um He became an impulsive spender. He was saying inappropriate things in public. his hygiene was a little bit different.
00:05:28
Speaker
And when I would talk about these things with him or with other people in our lives, they would think, oh, well, you know, you just had a baby. It's a huge change to become a dad. It's A huge change to your marriage.
00:05:44
Speaker
But that just never would sit right with me because Mike and I had talked about wanting to start a family while we were dating. Like we really, really wanted to be parents and everything that we had done, you know,
00:05:59
Speaker
getting our graduate degrees, having jobs that we felt were turning into careers.
Struggles and Diagnosis Journey
00:06:05
Speaker
Buying a home in a community where we could see ourselves raising a family was to set ourselves up for that family life. You know, i picture myself with like a gaggle of kids.
00:06:18
Speaker
And so when people ah suggested that his odd behavior was Due to that, it didn't sit quite right. And Noah was six months old, and Mike just happened to have his annual well visit with his PCP.
00:06:38
Speaker
Before you go on, do you mind me asking, was he noticing any of these things? Like you said that you were bringing them up to him. How was he reacting when you would say something to him? he was just that ignoring it and passing it off or...?
00:06:53
Speaker
Yeah, no, Mike really did not endorse that anything was wrong or strange or weird. um he couldn't understand what I was upset about.
00:07:08
Speaker
And he certainly wasn't bothered by the changes in his behavior. He didn't seem frustrated or like he was missing our closeness as a couple. um Yeah, he just really seemed unaware and unaffected by it, which was more frustrating for me. Right.
00:07:32
Speaker
Because I would try and talk to him and Mike and I had always been good communicators. So now I'm trying to talk to him about things and he just seems like I don't know what you're talking about. yeah Like I specifically remember at the end of my pregnancy one night, it was ah Noah was born in March and it was a very snowy March.
00:07:53
Speaker
And I was, you know, right at the end and thinking, my God, if I go into labor tonight, going work. I'm going to have to call a neighbor or 911 because it was a weeknight and Mike was totally drunk.
Meeting Dr. Galaburta and FTD Diagnosis
00:08:07
Speaker
He had come home after work and just started drinking. And i said I said that to him. I said, you know, like, it's icy out. If I go into labor, I'm going to have to call someone. and And he said to me, stop nagging me. I can have a beer.
00:08:23
Speaker
But first of all... And that wasn't a characteristic of how he would respond to you traditionally. Like nothing about that was the Mike that I knew. he would never speak to me that way.
00:08:36
Speaker
He wouldn't drink on a weeknight. He wouldn't drink to get drunk. He also cared a lot about my safety and well-being and especially the safety and well-being of our child. So...
00:08:51
Speaker
all of that was just this huge mismatch to who I knew him to be and what I knew of our relationship. But having a baby is a big distraction.
00:09:04
Speaker
So when, even though Mike was acting differently, and I was talking about it with people that I loved and in our inner circle, it took me a little while to take action because I had this new role as a mom. Mm-hmm.
00:09:23
Speaker
um But kind of serendipitously, ah Mike had his annual well visit scheduled with his PCP. Noah was about six months old.
00:09:34
Speaker
And I remember the night before talking to my mom on the phone and she said, know, what time is that appointment? Can you take your lunch break? You need to go with him to that doctor's appointment and ask the doctor if there's something wrong with your husband's brain.
00:09:50
Speaker
And I remember being so annoyed and saying to my mom, mom, there's nothing wrong with Mike's brain. He's just being a jerk. And I really thought that because I had no ah framework. He was so young. He was so young. He was 29.
00:10:07
Speaker
you know I had no framework. I did not know that, first of all, young people could get progressive neurological disorders that lead to dementia. I did not know that.
Caring for Husband and Father with Alzheimer's
00:10:18
Speaker
Number two, i didn't know that... Behavior and personality changes were symptoms of neurodegenerative disease.
00:10:30
Speaker
So none of like that wasn't crossing my mind at all. And was this in his family at all or no no history whatsoever? no history whatsoever. So you were a blank canvas No education behind what FTD was, what dementia was, or any neurological disease. No, but i did have ah a grandparent that had Alzheimer's disease.
00:10:55
Speaker
But I was young, and my memory of my grandpa was just that, like... He didn't remember things and it wasn't as fun to talk with him, like as a young child.
00:11:07
Speaker
But to be fair, I was a lot closer with my dad's mom and my mom's mom. I had those closer relationships with my grandmother and Meme. So I don't think I was as aware of even what the changes were.
00:11:23
Speaker
And we always say, too, once you meet one person with dementia, you truly meet one person with dementia, meaning it presents itself so differently in every single person.
00:11:33
Speaker
and to go back on it, he was so young, you wouldn't have necessarily said, oh this is much larger than him just being ridiculous. and I started wonder if he had... like a mental health or psychiatric condition like i started to think what conditions can have onsets in their 20s like we did get married young like what was i missing and so i remember holding noah in the baby bucket right the car seat on my arm and standing there
00:12:06
Speaker
in the primary care physician's office and I said to her, my husband is acting so weird. Could there be something wrong with his brain? And she looked at me and she said, No, I think it's just depression.
00:12:21
Speaker
And I will tell you, in that moment, I can still remember the way i felt in my gut. I knew right then that there was something wrong with Mike.
00:12:33
Speaker
And I don't know how, but I just knew it wasn't depression because it's hard to explain, but it was like, I couldn't talk to him. He wasn't there.
00:12:45
Speaker
And I just felt that this onset of depression would not have happened so quickly to steal him away from us.
00:12:57
Speaker
And so that led us on an odyssey of um eight different medical and mental health providers who misdiagnosed Mike. spent a week in a psychiatric unit um at a hospital. he told me it was awesome there because It was a locked psychiatric unit and Mike enjoyed his time there because the TV was on all the time and they had free coffee.
00:13:23
Speaker
Like a very odd response. um I remember visiting him during that week and I brought Noah, who was about nine months old at the time.
00:13:34
Speaker
And you know how when like a three-year-old is holding a baby, when they're done holding the baby, they'll just like get up. Yeah. And so as a mom, you're vigilant. And I remember visiting with Mike and he was holding Noah.
00:13:48
Speaker
And I don't know, he got distracted. His attention turned out to her. And so he just let go of Noah. And I was standing right next to him and caught Noah. Yeah. And, but that really...
00:14:01
Speaker
cued me in about safety and just thinking about what we were dealing with. You know, i have a friend in my life who says, even when you're unlucky, you can be lucky.
00:14:15
Speaker
a So and love that. Yeah. Maybe in some ways our family was unlucky to have loved ones affected by neurodegenerative disorders. But I feel that I've been so lucky in my life, the the people in um situations that have been presented to me to help us navigate these There are gifts in trauma and tragedy, right? And you've been blessed in a way to have gone through that and carried to that, that now you can shine the light for other people right in the ways that you are today yeah and even the people that we came across so the way that we were able to get mike diagnosed was my dad had been experiencing at the same time that mike was having these changes in his personality and behavior my mom
Balancing Care and Life Challenges
00:15:11
Speaker
started sharing with me issues with my dad being very forgetful
00:15:17
Speaker
I had seen it. Dad would tell us the same stories over and over again. um he couldn't remember to bring home things from the store that mom would tell him to. had his very first negative performance review at work.
00:15:31
Speaker
um One morning, he and mom were out on their regular set Saturday routine where he brought her to ah the bank and then he went to Dunkin' Donuts and then he just went home.
00:15:43
Speaker
like he forgot that he dropped her off at the bank. And so dad had started you know getting some evaluations for memory issues.
00:15:55
Speaker
And dad was at a follow-up appointment with his neurologist at the time, And the night before, Mom and I had had a phone call where Mom asked me, how's it going, you know, with Mike? And I said, oh, you know, I had a really weird thing happen last night. I got up to Nurse Noah and Mike wasn't in bed.
00:16:15
Speaker
And I found him in the basement with a butane torch. And when I asked him what he was doing, he said he was going to fix the washing machine, which wasn't broken. wow So mom heard that.
00:16:29
Speaker
And so at my dad's follow-up appointment with his neurologist, the neurologist said to her, oh, you know, just how are things going? And mom said,
00:16:40
Speaker
started describing to that neurologist some of the things that had been happening with Mike. And this was at the beginning of the week. And the neurologist said to my mom, I want you to bring your son-in-law in on Friday morning.
00:16:57
Speaker
I want to see him in my office. And that neurologist was Dr. Albert Galaburta, who at the time was the chief of cognitive neurology at Beth Israel Deaconess Medical Center.
00:17:09
Speaker
And on that Friday morning, mom and dad and Mike and my sister and I all went in with Noah. And my parents and sister and Noah sat in the waiting room while Mike and I met with Dr. Galaburta. And he listened to the history. He looked at a CT scan Mike had had. he talked with Mike, and um he knew then that Mike likely had FTD.
00:17:41
Speaker
Mike, in the middle of the exam, left the room, and Dr. Gallaberta turned to me and he said, it's very bad. your husband probably has something called frontal temporal dementia and we cannot cure it and he'll need to go to a nursing home and he will pass away because of this disease.
00:18:06
Speaker
And it was duly shocking I think
00:18:14
Speaker
i think ah oddly reassuring in that moment because when I went home and read about FTD, I was like, oh yes, this is exactly what he has, behavioral ovarian FTD. Now, of course, the incredible team at Beth Israel followed up with,
00:18:33
Speaker
cognitive testing and brain scans and blood and spinal you know fluid to confirm to confirm. But Dr. Galaburta is a world-renowned expert, right? So that's what it took. It took an expert with many years of experience to identify why would this person be having these behavioral and personality changes at such a young age? Yeah.
00:19:01
Speaker
So that was on a Friday and my mom and I were talking throughout the weekend and that Monday night, we'd been talking on the phone for about an hour and 13 minutes.
00:19:15
Speaker
And mom said to me, the baby is sleeping. You need to be sleeping. I'll talk to you in the morning. And mom went to sleep and she died of a heart attack that night.
00:19:28
Speaker
And, um, And then 17 days after mom passed away, dad had a follow-up appointment with the team at Beth Israel where Dr. Galaberta let me know that dad had Alzheimer's disease.
00:19:42
Speaker
And at the time, dad was 59.
00:19:46
Speaker
So at the age of 29, I found myself without my mom, who was... I mean, we spoke on the phone every day, all the time. you know we
00:20:01
Speaker
yeah just She was just such a light, a wonderful mother and a friend in my adult years. ah She was an incredible woman. And so I found myself without my mom at a time when I was a new
Strategies for Managing Caregiving
00:20:14
Speaker
mom. And then also suddenly in charge of two adult men with different progressive neurological disorders.
00:20:24
Speaker
And I have a wonderful sister, but she's younger than I was at the time. And i just really found myself at this crisis moment.
00:20:36
Speaker
And so I chose to leave my job in the child welfare industry um I lost my home to foreclosure. i spent every dime of my retirement savings.
00:20:47
Speaker
And I ended up as a full-time caregiver and benefited from the social safety net of Medicaid, EBT SNAP benefits, Social Security, um and really spent the next five years as a full-time caregiver.
00:21:05
Speaker
That is a lot. You had in a span of three weeks... So much happening. And I'm sure your mom was the caregiver for your dad prior to all of this happening too, which that's a whole other side conversation, caregiver burnout, right? And what that does.
00:21:22
Speaker
But you assumed this role now is the caregiver for your dad, a brand new mom, now taking care of your husband and having to make decisions with regards to his needs and what he needed to have, what did that feel like for you in that moment? Not to mention everything else kind of felt like I'm sure was coming down on you.
00:21:44
Speaker
um What did you do for yourself and what did you feel in that moment? Because I'm sure a lot of caregivers can feel just defeat. And what are you trying to tell me? Yeah,
00:22:00
Speaker
You know, one of the things that has been an incredible light for me in my life, of course, has been my son.
00:22:11
Speaker
so if Noah listens to this podcast later, he'll be like, oh, mom's crying again, talking about how wonderful I am. So Noah now is 17 and he's a senior in high school, but I could go ah on for a whole podcast episode about how incredible Noah is yeah But Noah was an incredible North Star for me because i was raised by wonderful, loving parents. And I wanted my son to have that same experience of having wonderful, loving parents.
00:22:42
Speaker
you Now, FTD was taking his dad from him, but I didn't want FTD, Alzheimer's, and caregiving to also take his mom. So every morning when I would wake up, my life was like a triage.
00:22:59
Speaker
I would think, okay, who needs me the most today? Like what is happening? So it might be that maybe dad had a doctor's appointment and Noah had a play date or Noah was no and I were going to go to mommy and me yoga or um maybe I would have plans for the day and then someone would have a fall and we would need to go to the emergency department or maybe I would have plans for the day and someone i would wake up and seem more disoriented than previously.
00:23:28
Speaker
um So I felt like every single day was triage. And there was a lot of paperwork mixed in a lot of figuring out what was dinner going to be, trying to keep the laundry going, um but always trying to ah carve out those moments to have like bath time with Noah or read stories.
00:23:51
Speaker
And very early on, I was like running ah to get myself a therapist. And I you know could chuckle thinking about that very first appointment where the therapist is like sitting across from me and said, okay, so why do you think that you need therapy? and Are you ready? and so i just And at one point, I remember she stopped like taking notes and she was like,
00:24:14
Speaker
what time is good for you next week? keyno yeah And so that for me, i would just beat that drum over and over again for anyone who is caregiving for somebody else, try to get connected with a mental health provider.
00:24:30
Speaker
And I think now actually it's easier than ever because many mental health providers can meet people over Zoom or like a you know secure HIPAA compliant platform so that caregivers don't even have to necessarily leave their homes to get child to get that mental health support. right So I would say that and very quickly i recognized that I could not keep myself, a baby, and two adult men with yeah progressive neurological disorder safe at home together.
Different Care Needs and Support Systems
00:25:04
Speaker
It's not enough. ah So I was lucky that Mike's family was able to care for him for a little while until I found an amazing skilled nursing facility um that had a Medicaid bed for a male and was willing to take him.
00:25:21
Speaker
Between Mike's experience and your dad's experience obviously both neurological diseases, but both very different. How did you as a caregiver, a wife and a daughter navigate those 2 different diseases um in terms of the care and the support that you needed to bring in for both of them. Did you find it to be similar or was it different. How did you navigate that for yourself and Did you have support outside of your therapist to help you kind of look at what was needed? yeah So yes, I had to take different approaches because dad had a memory-based impairment. So
00:26:07
Speaker
dad really, there have been moments with dad where he has said to me Kate, I can't remember anything. i don't want to be a burden to you. Like dad has exhibited some moments of awareness, but then many, many others where he's like, no, I'm a great driver and I still want to work. And so with dad, it was this sort of ah really wanting to think about his dignity. And I really benefited from learning about the method of habilitation therapy, which was a therapeutic model for dementia care created by Dr. Paul Rea and is now a training offered through the Alzheimer's Association.
00:26:52
Speaker
In habilitation therapy, I think I learned a lot of communication strategies that helped me with dad, such as when dad would say, i want to i want to go back to work. I would say, my gosh, dad, you worked so much and so long. You've provided for us. And now it's your chance to be retired.
00:27:09
Speaker
um And dad always had a helper mentality. So when it was time that I needed more support for dad, I always pitched it as volunteering in the community.
00:27:20
Speaker
So when I had to hire a companion for dad so that I could do things with Noah or go to appointments with Mike, I would say, oh, dad, you know, this guy, Paul, ah he's also retired. And he heard that you're retired. And he's going to be, yeah, he's going to be volunteering at the church on Tuesdays.
00:27:39
Speaker
He said he'd swing by and pick you up. Would you mind going with him? They could really use the help. And they literally would go. went to our local church and I was like, is there anything dad could do?
00:27:49
Speaker
And they used to have dad vacuum the church on Tuesday mornings with Paul. And then they would go and go to Dunkin Donuts. They would go for a walk.
00:28:01
Speaker
Dad ended up like Paul would take dad for all his haircuts, his chiropractic appointments, his dental cleanings, things that really helped me because I didn't need to be present Like Paul could take him to that hey hygienist appointment. And if any issue came up, they could call me.
00:28:21
Speaker
You know, Paul could take him all the haircuts and he just took something off my plate. And did you see a beautiful bond being created between the two of them as well through that experience? Yeah, that they became real friends. And I didn't know how to hire a companion, but I had heard of this resource called Life Care Management.
00:28:42
Speaker
So I hired a life care manager who came to our home, did an evaluation, talked to me about the things that I would need and helped me interview and hire Paul.
00:28:55
Speaker
yeah Like, cause I didn't know how to do that, nor did I have the time to learn because I was really in a crisis mode every day. So I didn't have time to research and learn what are the,
00:29:10
Speaker
questions you should ask a home care provider. How do you make sure you hire one who is licensed and insured and, you know, all of these things. I think for a lot of our listeners too, whether it's an older adult caring for a loved one or an adult child, um or even a professional, it's hard sometimes for us to ask for help and to really recognize when we need help, but also to recognize what are our strengths and whatever our weaknesses.
Handling Resentment and Seeking Help
00:29:40
Speaker
How can we bring those people in to really help us in the moments that we need help? It may not just be hands-on care, but in your situation, It was companionship for your dad so that you could do what you needed to do as well.
00:29:55
Speaker
What advice would you offer to someone to really kind of go internally to evaluate that so that they do not come to a point where they're living in resentment for being that caregiver, um but really calling in the resources when the time is right?
00:30:12
Speaker
Yeah, I think resentment has been a feeling that has, you know, popped up for me at different points in my caregiving journey. And i think it's because
00:30:26
Speaker
I chose intentionally many of the roles in my life. I chose to be a wife. I chose to be a mother. But I didn't know that I was going to be presented with the role of caregiver.
00:30:40
Speaker
Or maybe i had thought about it when I was older. was say down the line. Yeah. Not when you're in your young 30s. And I don't think I even knew what that meant. I thought, oh, of course, when my parents are her elderly, i i would help them. But I had no idea...
00:30:59
Speaker
what the responsibilities really entailed and how that could impact your other roles. So you know one of the things that happened was I had um i noticed that dad would get very overstimulated if I would bring him to school events for Noah.
00:31:18
Speaker
Because I think many children, lots of noise, dad really didn't like those environments of children's birthday parties or like going to like a school book fair, or things like that.
00:31:31
Speaker
And there was one day where I chose not to take Noah to a birthday party where he had been invited because dad wasn't having a good day. And I realized in that moment that i had to make some changes because caregiving was getting in the way of me being the mom that I wanted to be.
00:31:53
Speaker
Now, of course, there were times where prioritizing dad's needs because he was having a crisis or just really needed me was fine. And I felt good about that.
00:32:05
Speaker
But I didn't feel good about it as just like a matter of course or routine. one And so I've sort of used that emotion. And again, right, these feelings of resentment, which are a ah That's a dark feeling. It's ah a bad feeling for many people to talk about. You can feel ashamed about that.
00:32:26
Speaker
I think all the therapy I've had has helped me to think about when I have feelings of anger, frustration, sadness, um overwhelm, to really look at that and say, okay, this is telling me, this is like a clue that I need to do something different.
00:32:46
Speaker
So what is that something different that I need to do? Do I need to call a friend and say, I really need to go for a walk and just talk? Or, you know, could you come over and hang out with dad and Noah?
00:32:57
Speaker
I'll make the dinner, but I got to go to Pilates class or, you know, talking with is something else that really, really helped me was working with an elder law attorney to think about what I could do to set up my finances to prepare for what I thought might come ahead, and also to be realistic about how I was going to need time where I was going to have to hire babysitters so I could go out with dad.
00:33:24
Speaker
I was going to need to hire companions for dad so that I could be with Noah, um hire people so that I could go and spend time at the nursing home with Mike. It was always this like Jenga I can imagine. Maybe Tetris. I'm not
Grief, Joy, and Healing through Advocacy
00:33:39
Speaker
sure. Yeah, both. Both. But recognizing that along the caregiving journey, it doesn't always feel like, oh, I'm so blessed and honored. No, doesn't always feel like that. There are really tough times.
00:33:53
Speaker
But that's when you can't get upset at the person you're caring for. You got to think about how can I reach out in my community whether it's my faith community, my community of residents, my disease community, and get help, like ideas, connections to make a change to alleviate those negative emotions.
00:34:18
Speaker
I think it's amazing, too. We talk a lot between our clients and my own personal loved ones about um being in the role of a caregiver and what that means. And i think sometimes the challenge is like you were saying, you weren't expecting that role as a caregiver. And I can think of... um some situations in my own personal life where someone has stepped into that role and because they're older, right? They're in their late 70s, 80s, 90s.
00:34:49
Speaker
And it's expected that I'm going to step into this. I'm the wife. I'm going to care for him. That was always our plan for him to stay at home and what that does to the caregiver over time.
00:35:04
Speaker
But also once our loved one leaves this earth, What does it mean for them after that happens? And i know with your mom passing and then Mike obviously passing, he is no longer with us.
00:35:20
Speaker
What did that mean for you after? and I think that you as an individual, you're an anomaly for some caregivers, right? Because very early on, you looked at what do I need to do to care for Noah?
00:35:33
Speaker
What do I need to do to care for my dad, for Mike, but also for myself? and bringing in all of these supports. Can you talk a little bit about what did that mean for you in rebuilding Katie after loss as well? Because you lost your mom and then you lost Mike.
00:35:49
Speaker
Yeah. What did that mean for you? and i and dad is still with us today, 16 years later. but i Which is amazing. When you think about his disease, yes it can be short and it can be long. can be i also want to talk about that too. Yeah. it it So it's just really crazy thinking about all the different types of caregiving experiences I've had. Yeah.
00:36:12
Speaker
um One of the things that I recognized was that for me, grief made an energy. And I thought a lot about how I needed an outlet for that energy of grief. I had to acknowledge it um so that I could continue to be the mom and the friend and the daughter and the professional eventually that I wanted to be.
00:36:44
Speaker
And I would say that the biggest surprise in my life, something that I did not know before all of these things happened, before that three-week period, was that I didn't know that grief and happiness, grief and joy, grief and new memories could coexist.
00:37:07
Speaker
So what I have... learn to do is accept that grief is a part of my identity and being now as well.
Importance of Care Facilities and Connection
00:37:18
Speaker
Did someone tell you that? Or did you just that was a learned experience for you? For me, that was a learned experience. Like I'm wearing that grief backpack. And sometimes my grief backpack is so heavy, that I am doing everything to drag it on the ground behind me.
00:37:36
Speaker
And then other days, It feels like a little clutch purse that I would wear on a cute date night. love how you have actually put a visual to it. So you're carrying it, but you can decide to take that off if you need to.
00:37:49
Speaker
to make that smaller to make it a clutch purse. I think just some days it's heavier than others. And for me, doing something like this or when I'm standing at a podium, um when I'm working as director of caregiver support services,
00:38:07
Speaker
That gives me a p place to put the energy that grief created in my life. And it has been such a healing experience. I'm so appreciative of Dr. Brad Dickerson, who's the director of the MGH FTD unit, who took a chance on me and gave me this role.
00:38:26
Speaker
You know, I'm appreciative of every company and family that I've been able to work with through my consultancy, because every time I'm out,
00:38:36
Speaker
talking about this experience and inspiring people to move forward as scientists, as donors, as venture capitalists, I feel like I'm fighting back against the diseases that tried to take so much from me.
00:38:51
Speaker
And that is what helps me make that grief backpack a little bit lighter. With all of the folks that you work with um through your grief sessions and to your own personal business, is there a common thread that you find amongst caregiving?
00:39:08
Speaker
Well, I think a common thread for sure is what you spoke about. Like, well, are you know, I promise the promise, right? I promised my mom that I wouldn't put her in a nursing home. I hate that phrase so much.
00:39:21
Speaker
And one of the things I try to talk about is the real examples of love and care. i have, if I could just share this one experience of when Mike was at the end of his journey, he was having swallowing issues and he developed aspiration pneumonia. And in the middle of the night,
00:39:43
Speaker
It was a nurse on the floor who was a sub and she wasn't familiar with our values and goals of care and he was sent to the hospital. And so I woke up in the morning to missed voicemails.
00:39:56
Speaker
I rushed to the hospital after dropping Noah off at preschool and dad on transportation to his adult daycare. And I said, i don't want him to receive treatment.
00:40:06
Speaker
I want to go home on hospice. And home for Mike meant back to the nursing home. And so they discharged him from the hospital on hospice. They called the skilled nursing facility that he was in, which has since closed, unfortunately, and let them know he was coming back on hospice.
00:40:24
Speaker
So I followed in my car. And as I was signing in at the front desk as a visitor, ah the admin at the front desk let me know that they had moved Mike to a private room. When she told me this, i felt like just defeated again. I already felt exhausted because in Mike's room that he shared with a roommate, I had over 60, like 11 by 14 color posters, photographs of Noah all over the room, called photographs of Noah, of our family,
00:40:58
Speaker
And I was like, oh, God, I'm going to have to take down each one of those and rehang them. And as I was walking down the hall to his unit, I was giving myself pep talk.
00:41:09
Speaker
You can do it. You still have time. The babysitter is going to get Noah. You can do it. You can take them down. You can rehang them. It's important to Mike. And I'm never going to forget
00:41:23
Speaker
opening the door and walking into the unit and seeing the wall of Mike's new room with every poster re-hung. So in probably the 90 minutes between when the nursing home received the phone call that Mike was coming back on hospice and when I arrived, they had completely recreated Mike's room. And there he was all snug in his bed with his personalized photo pillow and his blanket that Noah and I had made for him
00:41:56
Speaker
And he was all tucked in with this little lamp nightlight and every photo in the room and his music playlist on. And they were like, hi, Katie, you know, what do you think? Does Mike look comfortable to you?
00:42:08
Speaker
and these were people that have been caring for him and caring for me and for Noah. So what I want families to know is that they and their loved ones can experience true love and care from professionals in the field.
00:42:27
Speaker
And that when we promise our loved ones that we're not going to put them in a home, really what we should be promising our loved ones is I'm not going to abandon you. I'm not going to forget about you and promising, I'm going to make sure that you have the care that you need to be safe and healthy.
00:42:47
Speaker
And I'm going to set up the care that I need so that you can be safe and healthy. And I can focus on being the person that only I can be. the daughter, the wife, the friend, the companion.
00:43:01
Speaker
Because I think about how that the skilled nursing facility where Mike lived allowed me to be his wife and Noah's mom.
00:43:12
Speaker
The number one goal of care in Mike's care plan was family time. And so every time I would bring Noah, they would assign a staff person to support those visits because honestly, Noah was a very busy toddler and Mike was,
00:43:27
Speaker
very busy himself. And so to have that support that could make a 30 minute visit, something where we could create a new memory of joy. But without that staff support, i would have just spent the time chasing the two of them around.
00:43:44
Speaker
That is such a powerful story because we often talk about, and I'm sure you've heard it too in your sessions with clients. When your loved one says, I want to go home,
00:43:56
Speaker
And we educate people a lot of times. It's not necessarily the four walls that have surrounded them.
Guidance after a Dementia Diagnosis
00:44:03
Speaker
it is what you did for Mike. It is the photos on the wall of Noah and your family and the experiences that you had together.
00:44:12
Speaker
It's him seeing that and living that every day because the unfortunate reality is that sometimes they don't know any different. It's kind of like going back to when Mike had a psychiatric stay and he loved it. He loved it. It's it's the experience that you've created, but it's also what you touched upon is the power of the professionals that truly take your loved ones under their wing and show them that this is life. And we are not abandoning you. we are here to support you.
00:44:45
Speaker
and I know that folks that are listening have had probably really good experiences and negative experiences, right? That's like anything in life. And I think that we have to continue to be the folks that show up and advocate and also help plan for life.
00:45:01
Speaker
If this were to happen, how do you want your care to be carried out? What do you see for yourself? Do you want to be in a calm, serene area? What is it that we can do so that I don't have to make those decisions? What do you want to have happen?
00:45:17
Speaker
Let's talk a little bit about that in grief sessions and when you're working with older adults, um but also family members. What is your one point of advice that you give to them when you think about the future and the planning for what's to come?
00:45:36
Speaker
Yeah, so that has been a real gift. um Through my work in the MJHFTD unit, I had the opportunity at to work with families from da day of diagnosis all the way until passing. I work with a lot of families around brain donation. Mm-hmm.
00:45:54
Speaker
And have the privilege of having many serious illness conversations and discussions around advanced care planning. And even ran a small caregiver study funded by the National Institute of Health around having early discussions about advanced care planning, like what medical decisions might you need to make for your loved one later in their dementia journey.
00:46:18
Speaker
And what I try to do now is when people are in the early stages of a diagnosis to encourage those advanced care planning conversations early, not with the idea that, you know what,
00:46:35
Speaker
this is the exact scenario that's going to be presented in a hospital or at home or in a skilled nursing facility and your loved one's going to have to make this specific decision. It's more talking about your values, your wishes, and your goals of care and making the promise that you will do everything you can to protect personhood and dignity as it is meaningful to that individual.
00:47:02
Speaker
But that may mean different things at different stages. It might need mean needing to bring in different providers into the home, different equipment. It might mean needing to move your bedroom from the second floor to the first.
00:47:16
Speaker
It might mean that you need to live in a 24-hour memory care or a skilled nursing facility, or you need to engage with the services of hospice.
00:47:28
Speaker
And that the focus is on the feelings, not the services. Like, what are your values? What are your hopes? And how do we also protect the people that you love and care about?
00:47:41
Speaker
but So I know for sure that I was protecting Mike's dignity as a dad by having him live it in a place that was separate from where Noah lived. Because in fact, he had some behaviors that were also unsafe. And so I know that Mike would never have wanted to accidentally harm his son.
00:48:02
Speaker
So I was protecting Mike and promoting his value of being a good dad because by making different care decisions. And so I talk with families about this as it can be difficult, but it's a gift to their partner.
00:48:17
Speaker
So that works well, I find, when people have an Alzheimer's dementia because people often in the early stages... have a ah sense of their themselves and can maybe understand more about what's happening. It can be a lot harder with families where um their loved one has a diagnosis of a behavioral variant FTD, frontal temporal dementia.
00:48:43
Speaker
Because there's often something called anosognosia, which is a um an experience where the person with the diagnosis is not aware of anything that's happening to them.
00:48:54
Speaker
And so that's what happened with Mike. He couldn't have those conversations with me. So I had to think more about like, what did he do before I was doing those decisions? Did you work a lot with his family to try and determine not know?
00:49:10
Speaker
No, I think it wasn't working with his family. I think it was just thinking a lot about the conversations that we'd had. um And I just tried to think about how much, you know, used to care about my safety and, um yeah, and just really thinking about that and how he was as a person. who he was as a person I love that.
00:49:34
Speaker
There are also, um this has been a wonderful conversation. I think we could go off on so many different paths. And Katie, I hope you come back and have another discussion with us as well. One important topic that I just want to bring up is sometimes folks will go and get a diagnosis and they'll sit in the neurologist office. And a lot of times what we hear is, we got the diagnosis, now what?
00:49:58
Speaker
And they almost feel abandoned after that. I think every ah experience is different, whereas, you know, you have this great setup to offer this support to folks.
00:50:10
Speaker
And there are wonderful resources out there, the Alzheimer's um organization and just everything else that's out there. But I think sometimes it's debilitating for people to find the right place to go. yes What do you offer in terms of coaching through how does someone understand the diagnosis that they just got and what this is going to mean for them.
00:50:35
Speaker
Right. So what I tell families first is after you receive a diagnosis, there's really three things that you should do.
00:50:47
Speaker
The first is to ah talk with the people that you love in your innermost circle about this new diagnosis. And for some people right away, they can really only do that with their spouse or maybe their adult children. It's really hard to expand that circle. But number one is to talk with the people who love you.
00:51:10
Speaker
The second thing is to get connected with a certified elder law attorney. Whether you are 29 or 89, if you receive a diagnosis of mild cognitive impairment, Alzheimer's disease, or even if your primary care physician says you seem to have dementia,
00:51:29
Speaker
You want to meet with an elder law attorney to find out um what are things that we should start to think about, what paperwork could I still sign and what decisions could I still participate in.
00:51:43
Speaker
And then the third thing is to think about what advocacy organization are you going to connect with. So if you are diagnosed with Alzheimer's disease, you want to reach out to the Alzheimer's Association. If you're diagnosed with FTD, you want to reach out to the Association for Frontal Temporal Degeneration.
00:52:02
Speaker
And this is where you're going to have an opportunity to access educational resources that are trusted. I don't want anyone going home after a diagnosis and Googling worst thing that you can do. It's the worst thing that you can do because there will be many things that will be frightening. And you need to know, well, wait a second.
00:52:25
Speaker
Is this frightening information or scenario coming from a trusted source? Is this frightening scenario? Does this even have to do with Mm-hmm. And then by being connected with that advocacy organization, so first you have access to that trusted information.
00:52:44
Speaker
The second thing you have access to is a support network. And I think that by joining support groups, which there are support groups for persons living with a diagnosis, for care partners, for adult children, ah for dyads, right? So it could be like to a spouse or yeah your life partner, you could go together.
00:53:04
Speaker
That's where you start to learn about resources. like i wouldn't but My girlfriends at mommy and me class weren't talking about life care managers. right I heard that term in support group.
00:53:16
Speaker
So I think those are the three things, right? Talk to the people you love, connect with an elder law attorney, and then go on the website, call the helpline for the advocacy organization that's appropriate for you.
00:53:30
Speaker
if you If you don't know what's causing your cognitive changes, so if a doctor says you, you seem to have dementia, I don't know why, which could happen, contact the Alzheimer's Association at alz.org because the Alzheimer's Association is actually ah the Alzheimer's and Related Dementia Association. It's just too long of a title. So anyone living with cognitive impairment is eligible for support and services through the Alzheimer's Association. That's great. And we will link all of those resources in the show notes too.
00:54:01
Speaker
um One last question from an advocacy standpoint, you mentioned something very early in this conversation that there were a lot of professionals that misdiagnosed Mike. Yes. For someone that is navigating that and feeling in their gut that there is something incredibly wrong and every professional is telling them no or they're hearing from other people this is a normal process to aging which usually it is not at all.
00:54:26
Speaker
What would be your piece of advice for them to continue to advocate for their loved one and figure out an actual diagnosis?
Documenting Symptoms and Evaluations
00:54:37
Speaker
Yes, I would say document and speak up.
00:54:40
Speaker
So one of the greatest tools that we have is what many of us are carrying around in our pocket, which is our phone. and Sometimes it can be difficult when you have just a couple of moments with a healthcare care provider or you're trying to alert a healthcare provider to changes in your loved one to think of it on the spot.
00:54:59
Speaker
So I advise caregivers to keep a journal, whether that's written or just notes in your phone. Today, realized that my loved one has been wearing the same clothes three days in a row.
00:55:10
Speaker
Today, my loved one microwaved a bagel for 20 minutes and caused a fire and didn't seem to know what to do. ah Today, my loved one got lost on their way home. Document those things with dates and concerns.
00:55:24
Speaker
And then as far as speaking up, and many people say, well, because of HIPAA, I can't talk with, because of confidentiality, I can't talk with my loved one's healthcare provider. They won't talk with me.
00:55:36
Speaker
HIPAA is about healthcare care providers not revealing confidential information about their patients. HIPAA does not prevent in any way you sharing information with your loved one's healthcare providers.
00:55:50
Speaker
And people say, well, Katie, how could I do that? So let's say your loved one has ah an appointment coming up with their primary care physician and they don't want you to attend. You're not welcome at that appointment.
00:56:02
Speaker
You could call the office the week before and say, I need to speak with a nurse regarding my you know loved one's appointment coming up. The nurse calls you back and you say, hi, I need to provide some information about things I'm concerned about that I need the doctor to review before my loved one's appointment on this date and time.
00:56:23
Speaker
um If you are able to go into the appointment, you can write those concerns on a piece of paper and give them at the check-in desk. This is for the doctor to review before they step into the room with my loved one. If you think that those things are going to be triggering or upsetting for your loved one, you can write right up at the top, I am concerned my loved one will be upset if you address these issues directly.
00:56:46
Speaker
Physicians advice are very used to this. And I think you know that that is a way to advocate for that referral, for that you know cognitive test, for that lumbar puncture, for that referral to see a specialist.
00:57:03
Speaker
But we know that not everyone has access to specialists. There are places in the United States called neurology deserts where for a 200-mile radius, there's not a neurologist. And in fact, every neurologist isn't even a dementia specialist.
00:57:17
Speaker
So it is challenging um and that those challenges are exacerbated when people live in historically marginalized groups. That's great. um You have a keynote speech, Love Will End FTD.
Love in Caregiving and Advocacy
00:57:31
Speaker
I'm assuming that what is woven throughout that um is unconditional love. Talk a little bit about that as we sort of wrap up this session for today.
00:57:43
Speaker
Well, I think that for me, love has been the gas in my tank every single day from just literally getting myself out of bed in the morning ah to being able to step on a stage in front of a thousand people and share our family story.
00:58:01
Speaker
And it's the love that I received from my parents. It's the love I've been able to give to my son and my late husband and my dad.
00:58:12
Speaker
and But it's also the love that I've been able to give to myself. And I think that one of the things that we want to remember along the caregiving journey is that loving yourself should always be part of the care plan.
00:58:29
Speaker
Because when you're taking care of yourself, you can show up in the best way possible to care for your loved ones. So adding that wellness checkup, that mammogram, that colonoscopy, that mental health provider appointment for you to your calendar is actually an act of love for the person who needs you the most. That's beautiful. That's beautiful.
Closing, Gratitude and Contact Information
00:58:54
Speaker
Thank you so much for continuing to share your light. And I know that this has been a tragic sort of story, but there's beauty that has been born from it. And um your advocacy and you're just using your voice for that is just wonderful. And I'm sure that all of our listeners would love to continue to listen to you and hear from you too. How can folks find you or follow you? They can find me ah on my website, katiebrandt.org.
00:59:20
Speaker
um They can find me on Instagram at katiebrant6, and they can find me as the host of the From Care to Care podcast. Go to Apple or Spotify and look up From Care to Care where you can find the MGH FTD unit podcast. And thank you so, so much for bringing these stories, this content out into the world. The more that we talk about it, think it normalizes how caregiving can be a part of your life.
00:59:49
Speaker
and not overtake your life. It's so true. And you know what we always say too, you're never alone. So reach out, find that person, whether it's a loved one, a family, a friend, um or professional, we're all here to support each other. So thank you again, Katie. Appreciate your time. Thank you.
01:00:07
Speaker
Thank you for joining us today. we love having these conversations and we hope they sparked something for you too. If you enjoyed this episode, please like comment and share it with your community because together we can change the way the world sees aging.
01:00:22
Speaker
You can find us at dovetailcompanies.com or on any of our social media channels at dovetail companies. And just a quick note, the opinions shared in this podcast are those of our guests and do not necessarily reflect the views of Engaging Aging dovetail companies or our team.
01:00:39
Speaker
So until we see you next time, keep engaging with aging.