Today we’re going to hear a bit more than usual about her story, as well as her experiences providing resources to other caregivers through her work.
I want to let you all know up front that this episode will have some frank conversations on suicide and thoughts of self harm, so take care of yourselves.
Welcome to The Problem. I’m your host, Phil Lofton.
Mindi is the Community Programs Coordinator for CICOA – central Indiana’s area agency on aging.
In her work, she helps connect patients and caregivers to resources that can improve their lives, and she also helps promote a better understanding of Alzheimer’s and dementia, especially through the Dementia Friends program, which we discussed in episode 2.
This work comes from a personal place for Mindi. When she was younger, her Grandmother, with whom she had lived for several years while growing up, was diagnosed with Alzheimer’s.
What sort of circumstances led to you as a family finding out that your grandma had Alzheimer’s and dementia? And then what were the conversations like in your house and between you and your family members when that diagnosis happened?
This might have been when I was in a either, no, probably either eighth or ninth grade. And, Christmas I mean, another, another memory in that house. I mean, every holiday was spent there. My grandmother used to cater weddings and events and all that stuff. I mean, she was just the homemaker through and through. And so she loved holidays. because Christmas was such a big deal and so meaningful to her, there was this one particular year that, you know, she had told my grandpa and my mom that she wasn’t decorating, you know. We could still have Christmas over there, but she didn’t want to decorate. She was just clearly out of the Christmas spirit, but in a really just strain, like it was just, “Where’s this coming from?” You know?
And she tried giving away all of her decorations and some other, important material value, items. But yeah, she just, she tried to give all of that away to my mom. and also just, you know, it was like she always made the same sugar cookies that she had made all of her life and just these same treats and, you know, just the simple, “All right, we’ve got all the ingredients out and we’re getting ready to make all this stuff,” but she’s staring at it and has no idea what to do with these ingredient. Like, “What is this for?” and again, for somebody, yeah, she always made these treats. But for somebody who used to cater weddings, I mean, she catered my mom’s entire wedding, didn’t really even get to enjoy my mom’s wedding because she was doing all the hard work.
So again, that, that one Christmas was just so significant because it was really the first time we were like, I mean, just starting to see this depression set in
know for a fact that I was a freshman in high school at this point in time. And the next day was like my first winter Fest dance. I was so excited. I was going with my new boyfriend. I had this beautiful dress that I had picked out. but the day before, so I, I remember I just wake up, jump in the shower and I heard the phone ring and it was weird cause it was like six o’clock in the morning. So who’s calling the house at 6:00 AM? And then I just remember my mom like busting through the bathroom door and she’s like, “Grandma’s missing.” And I’m like, “What?”
I already have anxiety and I didn’t know it back then, but now I’m like, “Oh my god.”
So my heart’s just beating. So my grandma ended up, cause my grandfather worked third shift at a factory right down the road. but he had worked in this factory for years and, so she had left a suicide note basically. and I can’t really remember all the exact details, but we spent, I mean, I can’t even remember, it was hours. I mean, we drove to my great-grandma’s house that was in Jackson, Michigan. And we’re from Marshall, Michigan, so probably 20, 30 minutes away. Drove over there. I mean, we just checked every place where it’s like, “Where could she possibly be?” Just trying to check off places.
And then we ended up getting a call from the police department and they had found her at a truck stop right off of the highway. And she had a step ladder in her back seat. And I mean she admitted that she fully intended to jump off the overpass and take her own life. And you know, I mean those two memories… I mean there was a lot of just confusion and, and just a lot of other things that, you know, again, you kinda just glaze over it, like, “That’s weird but…” But then you’ve got these two circumstances where it’s like, “Okay, this is so unlike her. Something is going on.”
After Mindi’s Grandma got her diagnosis, her family settled into a new normal, with new routines and new behaviors. Eventually her Grandpa needed to go back to work, and Mindi stepped in to help provide care for her Grandma, joining a growing population of millennial caregivers.
She really started to decline once I went to college, my freshman year. So after my freshman year, going into my sophomore year of college, I played soccer. And so I came home that summer, I was working and my grandpa had just retired the year before and it didn’t take him long to get back a part time job, but now I look back and I’m like, ah, that was respite for him.
That was a break for him. So my grandfather asked me at the beginning of my summer break if I could just help watch grandma. And my grandmother was a babysitter, like for probably 20 plus years, ran a daycare out of her home right next to the elementary school. and so I thought it was just kind of ironic like, Oh, I’m being asked to babysit her, but I said, sure, it can’t be that hard. I mean, I spent most of my days there anyways because they always had the pantry stocked full of food and the fridge was stocked full of food. So I was like, Oh, sign me up. Comfy couch. Yeah, I can hang out all day. But I quickly learned, you know, I truly think it was one of the first times I went over there to start this little gig of mine. And as soon as I turned the door knob, walked through the house, I just got hit with this smell.
And I was like, Grandpa didn’t warn me about this. So of course, I run back to the bedroom and recognize that we’ve got a mess on our hands and could not allow her to just lie in that. So, I get her up, get her showered, get her dry, dressed, fed, settled out in the back room. And then I’m like, okay, now I’ve got to go clean this mess up. I got all that into the laundry and I mean, I could probably count on one hand the amount of days I didn’t have to do that. So that became my new norm for a five-month summer break for me. and so, you know, I mean, I would’ve never thought of myself as a caregiver. I was just doing what I needed to do, so my grandpa didn’t have to do this when he got home.
But now that I’ve worked for CICOA and I understand the level of care I was providing for her, and knowing that, I mean one in six millennials are caring for a loved one with some form of dementia at this point in time. I was one of those and so to think, Oh my gosh, many of my peers are in this role right now. I don’t know. It’s just really, I don’t know to be, you know, I’ve just got such a passion to get out there and to educate our younger generation about this because they’re seeing it. I guarantee you there, because that was me.
I knew she had Alzheimer’s, but I did not understand what in the world Alzheimer’s was. You know, it’s like, yes, I just thought of it as this health condition, but I did not understand at by any means. So I think for me that summer was like finally just understanding yes, what I’m going through, but what my grandfather lives with day in and day out. And now, you know, I wish I appreciated my mom a little bit more. We’re so much alike, you know, so I think moving down here, it’s been the best thing for our relationship cause we’ve been given space. But we’re so very much alike. But you know, just also understanding, okay, my mom is working full time and then, you know, I mean before she even goes home at night, she was stopping into my grandparent’s making them dinner.
Like we would have to come into my grandparents house and eat dinner nearly every single day if we wanted to eat because why would she go there and make dinner and then come home and make dinner. but just this appreciation I guess for what they’re going through. But I think for me it was the first time that I understood like she’s really regressed to a point where she can not bathe herself, cannot dress herself. She has to be told to get up, you know, and out of bed and help physically help her out of bed and, you know, actually dress her and put her pants on. And you know, it’s, it was just, I couldn’t, I can’t even put it into words. It was so heartbreaking and so frustrating and I would feel so guilty, but every time I’d show up to the house and you know, it’s like I just, I’m like, okay, take a deep breath before I go in and turn the door knob.
And it’s like either got, you know, smacked with that smell of “all right, she’s made a mess in bed and I need to go clean up”. And every morning that happened I would just get so freaking frustrated, you know, cause I’m like, “Oh my God, here we go”. I mean, just again, just big this kid. But I mean, I, I don’t think I ever really changed my sister’s diapers as a kid, you know? So it was like all of that, that stuff. I mean, you are doing every activity of daily living, you know, now I can say those words. I didn’t realize it back then, but just everything we do in order to get ourselves up and out of the house and onto our jobs or just, you know, I mean, I can’t, I can’t imagine. So for me, I was just, so, I would just sum that whole summer up of just exhausted and frustrated and just like, why did I say yes to helping?
You know? I mean, it’s terrible to say, but I’m just like, nobody told me this is what I’m getting. I was getting myself into like, yeah, I knew she’d have incontinence and have her messes and require this care. But I guess I just didn’t understand it until I was the only, like I didn’t have an option. I was the only person in the house and there was no way I was going to leave that from my grandpa.
So I wish, I wish we would have done more. I wish I would have, you know, just thrown her in the wheelchair and I mean we, she lived, they lived right next to the elementary school that I went to and my sister went to and all the kids that she babysat went to this school and you know, I wish we would have just walked around the school. I mean, just got outside and then got some fresh air. I mean, that is the thing that I think bothers me the most when I think back to all of this is just, again, we didn’t know any better, but we just never stimulated her ever. I mean, we’ve pretty much kind of kept her as a prisoner in her own home and that wasn’t the intention. But again, feeling like “We can’t take her anywhere so we have no other option but to leave her at home.” I mean, I wish, I don’t believe that there were any adult day services. but now again, working at CICOA and having these relationships with all the different, adult day service providers around town, I’m like, “Oh my gosh, she would have thrived in an environment like that.” You know, just some place where they’re doing crafts and they’re doing, cause I mean, that was her. She did cross-stitching forever and stained glass. And I mean, she was such a creative person. She would’ve loved that. But again, you know, you, you’re, you’re more focused on all the abilities that they’ve lost and you’re not focusing on what they’re still able to do. So I, I wish we would’ve done more, you know, even if it was just go outside and sit in the back. But I think I was just scared. I was scared to take her anywhere.
Since her Grandma’s passing, Mindi has helped Caregivers across the central Indiana region though her work. In addition to her current community-focused role, in her career, she’s worked as a one-on-one caregiver supporter through CICOA’s CareAware program, giving a hand to caregivers in times of crisis.
Do you feel comfortable sharing like when is, do you have any examples of like a time where you really feel like you’ve made a difference in a caregiver’s life?
Oh my gosh.
I’ve had two caregivers that were, contemplating taking their own life. and so, you know, I, I just, me being me, I, I did not know, you know, I’m not, we’re not really trained for that. and so I just simply went out there and this woman, as soon as I opened the door, I mean, just bawling her eyes out, you know, and really, I’m just sitting there just holding her hands, just letting her vent everything, everything for probably four hours, you know. And by the end of that, I mean, she just, she said, “There’s, there’s nobody that’s ever just taken the time to listen to me and let me cry and let me cuss. And let me be angry and let me just…” And there’s been at least three of those moments that I can think of. And it was just that, it was simply just being an ear, just somebody to listen and to not judge them for all the mixed emotions that they’re feeling, to cry with them, to hug them, you know, to just be a person, in a professional manner, you know, as much as you can. But I think that’s just, for me, that was the best experience that I’ve had. It was a struggle for me. because, you know, I’m young and don’t have a whole lot of life experience. I mean, I’ve, I’ve been a caregiver for my grandmother and watched my grandfather and my mother go through that. but you know, being that person that they’re confiding in, you know, I had a lot of, self doubt that I was the right person to do that job for them.
But you know, you walk in and it’s almost like the, they’re lifeless. Like they just looked. There’s one woman in particular that just looked almost like a skeleton, you know, I mean just ghostly, just pale and just like the life had been sucked out of her. And by the end of the couple hours that I spent with her and the first half was just talking about what’s going on. And then we shifted gears and we connected over being originally from Michigan, you know, so we found that commonality. but by the end of that, it was just like, I did not even recognize who I was sitting across from. She got the glow back in her skin, a smile. Her daughter came out and had a cut. Yeah, I mean it was just like her daughter typically hides in the bedroom and really doesn’t have anything to do with anybody who comes over. And she came out and she joined the conversation.
For me now I can look back. It’s been about a year and a half since I’ve been in that role and I can look back and, and think, “Wow, okay. I actually did make a difference at the time.” I’m like, “Okay, what tools am I really giving?” But I can, I just truly think that people, they just need to have that one person that they can be vulnerable with and not feel judged by. And I think for me, that’s just, again, there’s just so many stories that I can think of, but I, I had the unique opportunity of actually being able to go and, and be in the home with caregivers. A lot of that time is spent over the phone, but you know, there’s those few times you actually get to go in and be in the home or in a public space with them and I don’t know, I’m a, I’m a real emotional, vulnerable kind of person myself. So, to just know that people trusted me with the most vulnerable point of their life is like…
It’s really honoring.
Join us next week as we examine the patient perspective on Alzheimer’s disease and dementia.
Music this episode was from Blue Dot Sessions, Broke for Free, Podington Bear, and Sergey_Cheremisino