Spotlight on Care: Alzheimer's Caregiving
Welcome to Spotlight on Care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer’s and other dementias. Spotlight on Care is produced by the University of California, Irvine Institute for Memory Impairments and Neurological Disorders, UCI MIND. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information, visit mind.uci.edu. What would like to hear about next? Email us at mwitbrac@uci.edu.
Spotlight on Care: Alzheimer's Caregiving
Caring for a Parent with Early-Onset Alzheimer's Disease
Steve and Virginia sit down with Andrea Hughes, a dedicated caregiver whose mother was diagnosed with early-onset Alzheimer’s Disease. Featured in the PBS documentary Matter of Mind: My Alzheimer’s, Andrea shares her personal journey navigating the challenges of caregiving at a young age, balancing work and family responsibilities, and finding strength through community and storytelling. To learn more, visit the PBS documentary page, follow Andrea on Instagram @itsandreakrystal, and explore her work at candidcaregiverscollective.com.
From the University of California, Irvine. This is UCI MIND's Spotlight on Care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias.
Virginia:Today, we have a very special guest. Let me tell you why. Independent Lens is a series of documentaries on PBS television, and they recently aired a film called Matter of Mind, My Alzheimer's. This film centers on three families who are confronted with the challenges of becoming caregivers for their loved one after an Alzheimer's diagnosis. One of the families portrayed in this film is a mother-daughter
team:Andrea Hughes is in her young 30s. She finds out that Kristy, her 64 year old mother, who lives alone, has been diagnosed with young onset Alzheimer's. This PBS film clearly shows how Andrea's life as a young single woman is completely and unexpectedly changed as she becomes caregiver for her mom. And we have Andrea with us today. Thanks Andrea.
Steve:Welcome Andrea.
Andrea:Thank you. Thank you so much for having me.
Virginia:We're so glad you're here. We're going to start by saying, let's just have you give us a snapshot of your personal story. Give us a brief picture of your mom's life before Alzheimer's, and yours, where you live, where you work, that kind of stuff. Go ahead.
Andrea:Absolutely. When my mother first started exhibiting some symptoms of just memory, clearly there were memory issues. I was actually living in Ludington. I transferred there for work, which is in northern Michigan, and then she was in my hometown, at the town that she grew up in, which is Holland, Michigan. At the time, not long before symptoms really started to show up and things, there were kind of weird changes. My dad had passed away. He passedaway before his 60th birthday. You know, my grandma had just passed away. They passed away within just maybe three or so months of each other, so we experience in our small little family a lot of loss very quickly. And I truly do believe that that accelerated my mother's decline at that point, because it was very stressful for us all and stressful for her as well. But at the time she was living with my aunt, they decided to move in together, because, again, very small family- my immediate family here, where I'm at, is just me, my mother, and my aunt, which is my mother's sister. So they moved in together, and I was working in Ludington, so it was very it was tricky. Anyone who has been a long distance caregiver, whether it's in the thick of big decline, or in the beginning, when things are just turbulent and you don't understand, but you know that things are changing with your loved one. It's so stressful.
Virginia:So you'd be on the phone with her and she would repeat things-
Andrea:Yes.
Virginia:-you were just getting the feeling something's going on here.
Andrea:Yeah, so there were changes, even prior to memory decline, that were affecting our relationship and making it seem that something was changing, but because I didn't understand, and honestly I didn't ask enough questions, I internalized it and misunderstood a lot of stuff. She became very erratic in her thinking when we would talk on the phone, it was just kind of like she was verbally vomiting, fears, anxiety, paranoia. There was like a two year span where we would talk on the phone constantly, and she never once would ask anything about me. I would basically not speak because it was just this storm of stuff constantly, which was not like my mother at all. And this started in her mid 50s.
Virginia:Oh, wow.
Andrea:And so our relationship was starting to change and shift. Again, like I said, I internalized it and misunderstood what was going on.
Virginia:Did she ever say"Something's going on with me?" I remember when my mom said,"Oh, I can't remember anything anymore."
Andrea:Yeah.
Virginia:You know and I'm starting to look up vitamins. And, you know, what did I know?
Andrea:No, no, no. I think that's one of the first things a lot of people do. You don't immediately go to dementia or Alzheimer's. You think vitamin deficiency, or you're not getting enough sleep, or you're just getting older, all of these other things, but yes, there was a point. But it was not until her retirement at 62 and it was around that time, within probably the year of her retirement, that she started voicing that she was having issues where she would forget where she was going. Again, I didn't think dementia. I started having that in my 20s. I'm like, I don't know. Sometimes I'm just like, "Where the heck was I going again?" I didn't think too much of it. She started to say where she would be driving, and things started to look unfamiliar. But just before her retirement was when she had mentioned that she was struggling to remember what my name was. And so there was someone that had asked her what my name was, she couldn't remember, and she lied and made something up, and she was just crying, just like, how could a mother forget her daughter's name, but unbeknownst to her? I mean, at that point, it had been two years or so where she didn't even remember what my birthday was.
Virginia:Right. How did you get her to go for a diagnosis of something. I mean, you didn't know. She didn't know. How did that journey go?
Andrea:Well, thankfully, I'm very, very lucky in the sense that she was willing to do anything and everything. She did not fight me on anything at all. I had to initiate, you know, from the get go, really, I made appointments. I kind of took the reins on financial stuff pretty quickly.
Steve:Were you still living long distance?
Andrea:I was at that time. Yeah, I was. It was kind of like an agreement that I had made with my aunt at that time, was- because she was still driving, there was a lot of stuff that was still normal, not easy, but normal. And so I was just kind of like, as long as she continues to live like a normal life and it seems doable, we'll keep her there with you, because Holland is all she knows. And I also was like, as long as it seems doable for you as well. But I'm going to take over financial stuff. I'll take her to doctor's appointments, all of that stuff. But just like the living you guys will live together. So that was the agreement at the beginning, but it wassomething to where, by the time her retirement came, I knew that there was dementia. I knew that- there was just no denying that at that point, whether it was Alzheimer's or what type of dementia it was, I didn't know, but thankfully, I had her PCP refer us to get tested. The toughest part, honestly, wasn't my mother, but convincing her PCP that there was an issue, and to push it. There was a lot of resistance there, because my mother was minimizingbecause she could not see the full scope of what was going on.
Virginia:They could fool a doctor pretty easily in the beginning they can. My mom fooled our doctor,she'd say,"I'm fine." And he'd think,"Okay, she's fine." I'm like,"No, she's not fine."
Andrea:Exactly, exactly. And thankfully, my mother, when I would pipe up and I did it in the most kind way possible, she wasn't like, super resistant or fighting that, which I think did help in advocating for further testing, but yeah, we did the testing, and her first diagnosis was just mild cognitive decline. And I was both like-
Steve:MCI?
Andrea:Yeah, and I was doubtful. Honestly, I was really surprised that that was her diagnosis. I thought for sure it was going to be Alzheimer's. And he said the difference between him giving her an Alzheimer's diagnosis was that she was feeding herself and she was dressing herself and she was going to the bathroom on herself, otherwise everything else looked like Alzheimer's.
Virginia:So you finally decided that she should probably be moving in with you. How did that go?
Andrea:It was a very quick turnaround, and it was a now. I'm not waiting. Now type of thing. Really what it came down to was that she had more peace with me around. She needed me. I think our relationship and our dynamic, for whatever reason kind of kept her on an even keel, and it was just that her living with my aunt just wasn't working. It's just a different dynamic, sisters and mother and daughter. It's just different, and it is what it is.
Steve:So we've learned there's a chemistry that exists.
Andrea:Absolutely.
Virginia:Oh yeah, there's no doubt. You at that point were working, and you had to leave her in the morning. You probably were not real comfortable with that.
Andrea:I was not comfortable, but I was not worried. I was in property management for a number of years, and I managed the community that I also lived at. So even though I was going to the office, I was just walking to the office, and she would be there at home. So it was very-
Virginia:Oh that's good.
Andrea:Yes, yes, exactly. So, you know, in the fact that we lived in a small town, like I was never, ever going to be far, ever, within our small town in our community, so I would walk to the office and I had cameras set up around the apartment. I used a Facebook portal. I still havethat Facebook portal, which is just like a way that you can use Facebook Messenger to video call at home or what have you so and at that time, she semi sort of was still using her phone, or at least she knew how to answer it at that point. So what I would do is I would be in the office, and I would be watching the cameras. I would communicate to her through thecameras. I would call her numerous times during the day on the Facebook portal. I would also go get her and bring her to sit in the office with me while I worked, or I would put her into the community gym, and she would walk on the treadmill. I could see her in my line of sight. I would bring her to work events that I was facilitating. That's basically how I managed. And thankfully, I worked for a company that understood and that gave me so much leeway to be able to come and go when I needed to, but at the end of the day, I'm still working for someone, and I still need to be in the office, and I have a team that I'm managing. And it was I felt like I wasn't doing caregiving well, and I wasn't managing well either, because my attention was so divided.
Virginia:Yes, it was. Did you have to, like, make her lunch or something before you left?
Andrea:Yes.
Virginia:Did you let her cook in the kitchen?
Andrea:No, she could do the microwave. But there was always a concern that she would burn something, because we had lots of issues with the house and smoke would be coming out ofthe microwave because she put a cup of coffee on 10 minutes or something. And the stove- absolutely not. But microwaving was like 50/50, so I would pre make all of her food. I had sticky notes everywhere, whiteboards everywhere. It was just like our whole entire home wasa walking billboard for some kind of direction, you know, type of thing
Virginia:At this point you're thinking you needed to move. And the move was to Grand Rapids, larger city, theoretically more support. Tell us why you moved and what was involved with all that.
Andrea:Well, the reason why I moved was to be able to get us a little bit closer to the medical team,basically, her doctors, neurologists, even her, I'm blanking on the name, but she has arthritis in the knee, and I would take her to get steroid shots. So every doctor was at least an hour or an hour 45 away from Ludington and someone with Alzheimer's, you know, if people don't understand this, you have to be really flexible with time, because the idea of being super rushed or having to be somewhere super quick, or it can be very, very stressful, feel very, very chaotic. And so just for the sake of managing the process of getting places where we wouldn't have to plan so early in the morning or whatever the case, was being closer to medical support, being closer to, you know, my aunt was still living in Holland at the time, which is about 35 minutes away, being closer to friends, because I had no one. It was just me and my mom. And I was just at a point to where I was just like, I don't really want to do life alone with my mother, who doesn't always know what's going on. I need some other type of communication.
Steve:Time for yourself.
Andrea:Yeah, and also work just, it was just one of those things where it's really hard to work in office nine to five and also be managing someone's decline.
Virginia:Oh, yeah. Did you find a new job?
Andrea:I did, yeah. So I did take a new position. The position was to entail being able to work from home more and create my own schedule, which in theory, that was what it was, but not actually, in practice, I ended up being on the road sometimes multiple days a week or in calls on Zoom calls from 9 o'clock in the morning till 5 o'clock in the evening. And working from home does not necessarily mean that you have time and you have attention, true. And I didn't realize that even myself, I thought that I would have space to be able to go and, like, kind of manage and flow in between the two. But it was not like that at all. And so that transition was both hard on myself, because honestly, I was right back to where I was in the beginning, where I felt like I wasn't doing either job well, and it was affecting my mom, because she was so used to, number one, she was torn away from her environment that she finally had gotten a little bit acclimated to. I also brought in a new element of moving my aunt in with us for additional support, and since it was just the three of us family on this side of the state, anyway, and so that was different, havingthat presence in our space.
Virginia:Did your aunt know what she was getting into when she moved?
Andrea:I don't think so. I don't think that she fully grasped, just like I didn't fully grasp. I think that it's much different. Up until that point, she would come up to Ludington and be with my mom while Itraveled for work, or I would bring my mom to her for a few days, or what have you, while I traveled for work. And I think that even she thought that it would be different, like she didn't realize that there would be such a difference. I'm putting words in her mouth based on observations and experience, but she didn't understand that would be different visiting and supporting and then going back home to your personal space versus you're always around it. You always see it. And so there's been an adjustment period for her as well.
Virginia:Adjustment for her, and also adjustments for you. New job, and her Alzheimer's is progressing. What does your day look like now?
Andrea:Yeah, life has definitely taken a different turn, even from like a year ago. So currently, I made thedecision to leave that position last fall, I think it was. And it just wasn't the right fit for me and formy caregiving journey, and I never, ever would have anticipated that I would quit this career that I had worked so hard to get. Like I finally was in this position that I had been wanting for years, and it doesn't fit my life, the current life that I have anymore. It didn't fit my priorities, whoI had changed to. So I decided to end that relationship, and so now I'm home full time with my mother, focusing on content creation, on creating more community within caregivers, of creatingmore relatability, making just more connection there, and also building my own business to be able to continue to support and rally and show caregivers that, number one, that there can be some joy found in the process, that you can be a caregiver and support another human being without completely abandoning yourself to the process and essentially losing who you are. It can be done. It's not easy, but so that's been my process now, and it's been so different, so not what I expected, and yet, also the best decision that I could have made. I love where I'm at right now.
Steve:Hey, Andrea, did you feel when you made this decision to kind of stop this career that you worked so hard at. Did you have any anger about it? I mean, you know, feeling of like, "Gee, I have to give this up. This isn't the way it's supposed to work." And was there any frustration in terms of dealing with your mom during that phase? Obviously, you adjusted. But how was it in the beginning? I think our listeners might be interested, if you had anger, how you dealt with it?
Andrea:Yeah, I had a lot of emotions, for sure, at the beginning, the biggest emotion that I didn't realize I was dealing with at the time was grief, the grief of a piece of your life and a piece of your personhood, dying and changing and shifting. You don't think about grief when it comes to losing it an aspect of your life or your routine, but that's what was going through my mind. I didn't have any anger toward my mother about making the decision. I think because I would have made that decision, whether my mother was part of the decision making, if she would have been in it or not, it just wasn't a good fit for me. So it would have come eventually it was more of a thing of grief and also fear of who the heck am I without a typical job and a title and peoplebeing like, ooh, impressed. "Ooh, that's what you do? Interesting." Now I'm just So your ego took a little bit of a hit. like, "I'm a stay at home caregiver." Absolutely. I was just like, I don't know who I am without a title and without people being proud of what I'm doing, which is bananas, because there's so much to be proud of in making sacrifices and making the life altering changes of being a caregiver. But when you've been a career person and you've had this certain idea of who you're gonna be, being a caregiver, sounds like a downgrade, that's what it feels like.
Virginia:There's also the reversal of the mother daughter roles. I found that really difficult. Feeling like my mother's parent, almost as she progressed, she was more like a child. And I'm like, "Wait a minute, I used to go to my mom for advice, and now I'm telling her to brush her teeth?" Did you feel that as well?
Andrea:Yeah, absolutely, I felt too young to be experiencing that. You know, I'm 41 now, so I'm just like, I'm not too young anymore. Lots of people are dealing with these circumstances. You don't hear about it a ton yet, but you're starting to and I was just like, I'm too young to have lost my dad, and then losing my mother essentially, lost her already. And I don't have that traditional identity anymore. And you look at your friends and they're having brunch with their moms, and their moms are watching their kids and all of these different things, and you feel so unfair. So I think if there was any resentment, it definitely was pertaining to that of, this sucks. This sucks that I don't get to have this normal relationship with my mom, and I also was grieving the loss of her future and her hopes as well, because we had talked about all of these things that we were going to do together, and I was so excited for the future of seeing our relationship change from mother to daughter to like friends-
Virginia:Really like friends.
Andrea:Yeah, and we were robbed of that. And that's sad, and I really grieve that, especially considering that her decline when we moved went from at least she would clothe herself, she could either heat something up, or there was some decision making there. It went from that to incontinent, me starting to feed her. She still feeds herself, but not having the understanding of like clothing, how to put pants on. And I'm like, "Okay, so I'm a single mother now to an adult."
Virginia:Absolutely. I found the moment that you explained in the film, which is excellent, by the way,the time that she forgot you were her daughter. I remember that with my mom. It's hard.
Andrea:It is, it is. I remember it's so interesting having perspective. And I've mentioned this to other caregivers before. I remember not just that moment, but even moments leading up to that where she disassociated, or she would almost split me into two different Andrea's. I remember thinking, I don't think that I'll ever get used to this. I don't think I'm ever gonna feel okay with this? And you watch so many snippets from caregivers on social media, and they seem like they've become so acclimated to things, and you compare yourself to them, like,"How are they just so okay with their mother making this story up, and they just go along with it. Like, how do you get to that point?" And I remember thinking I would never get and now, just like it's one of those bittersweet things, that it's just normal. It's just normal. I don't take it personally that she doesn't know who I am. I don't take it personally or freak out if she has some kind of Alzheimer's is creating a scenario in her mind. I just go with it and we have some fun with it. Or, or if she says some woman in the corner is talking to her, I'm like, "All right, well, as long as she ain't talking to me," you know, type of thing, like, you just like, go with it. But I never thought I would get there. And the sad part of the journey is that eventually all this tough stuff will become just normal every day.
Steve:I was just curious, how about your personal life? I mean, you're obviously a young person, and you've got a life that you want to live, and you've had to make a sacrifice. How have you coped with losing your personal time, your social time?
Andrea:So in the beginning, it wasn't too difficult, because I was such a little loner and an isolator anyway.
Steve:I'm an only child too. I know what you're saying.
Andrea:Yeah, I think it might be an only child thing.
Steve:You're okay being alone.
Andrea:You're okay, yeah. And so I always told myself that, like in the summer I socialize. In the winter, I'm just like, we don't know each other, I'm just in the house. And so it kind of went in with my lifestyle in the beginning. I would say, when it came to the lack of socialization and lack of like, friendships and personal time- that shifted during COVID and lockdown. That challenged a lot of who I thought I was. I realized, "Oh no, I really do need people, because I'm not doing well. I don't feel well, I don't feel great." So that really made a shift for me. And then alongside, coupled with my mother, as she continued to decline, and I did not have her as a support or as my social circle anymore, because it was just like the communication wasn't there, like it used to be lots of confusion. And so then I'm like, "Well, now I really don'thave anyone, because I can't even talk to my mom." So once a lot of that changed, and I realized that I really do need people to lean on and to laugh with and to play with and to hang out with, that really played into my decision to want to move, because at that point anywhere between an hour, hour 45, two hours away from friends- friends who are living adult lives with children, grandchildren, husbands, all of this. And so we can't just drive two hours all the time to each other.
Virginia:So you mentioned in the film that you got very active with social media. Does that help?
Andrea:It did. It did. I would say, at the height of my isolation, before I decided that I needed to move, was when I really started to incorporate social media and just start to share in order for me to kind of tear down my own stories that I had that told me that I was the only one experiencing this. I'm the only one going through this, I'm the only one that's messing up. Everybody else has it together. I'm the screw up. And so I really started to share out of kind of doing that to, like, debunk my own thoughts. Honestly, I was trying to debunk my own thoughts, because if there's anything that you learn when it comes to social media, there is always someone that's gonna raise their hand up and say, "Me too." That's the good side of social media is that you will always find somebody that is just like, "I'm right there with you, sister" or "I get it." And I found that. I found a lot of my experiences echoed in other people that they themselves were also feeling like they were on islands and feeling like "I'm the only one going through this. No one else gets it." So it's just been a beautiful process seeing the diversity in the caregiving journey. Because when you stay silent and you stay isolated, you think that your story is the only way that caregiving looks like, but when you reach out and open yourself up, you realize that there's just a diverse array of experiences within the caregiving journey, and even within Alzheimer's itself, the diversity of how it plays out in someone who has the disease, it looks so different, and so it was great.
Virginia:You ever say, "Okay, I've got this new problem with my mom. Is there anybody out there who has a solution to this?"
Andrea:Yeah, absolutely. I feel like I don't do it as much as I even should. Sometimes I get a little bit bashful, or at this point, people sometimes look to me as the person that they get help and insight from. So there are times when I'm like, "Oh, am I gonna make people feel like a certain way? Because I'm expressing that I need help." I went through that, I'm over that now. So don't even worry that part is done, but there was a long time where I was just feeling very vulnerable to open up and name mistakes that you're making, things that you don't know and that you don't understand, and saying, "I need some insight," or "I think I'm doing this wrong." But the community of caregivers are, for the most part, most caregivers are so empathetic, and they want to see you as a human being, and they want to see your flaws because they're dealing with their own, and they want to make sure they're not the only ones.
Virginia:Exactly. If you could actually go back in time and tell yourself one thing at the beginning of this journey that you would do differently, what would it be?
Andrea:One big thing that I constantly go to is that at the first sign of changes in my mother, I would have asked more questions instead of made so many assumptions, because I could have supported her sooner. And so that's one thing that I go to often, and I try not to beat myself up over it so much anymore. Number one, because what's done is done. But also this is kind of the process of children and parents. Even when you're an adult child, you still see your parents as being superhuman. You don't see them as these people that are gonna pass away or get a disease, you just think they're always gonna be there for you, even if you know. You know what comes in life. And so it's totally normal for children or adult children, to resist changes in their parents, because it challenges who you are in this world and who they are, and it brings life into perspective of my parent isn't going to always be here, and that's really scary. So the way that I responded was completely normal. But if I could ever say something to help hopefully someone else learn from my mistakes, it's when you notice changes in your parents, ask more questions, make less assumptions.
Virginia:Good idea. That's a really, really important point.
Steve:Great way to sum it up.
Virginia:One last thing before we close, I remember some very sweet moments with my mom. Do you have a particular memory that you love to remember any point in this journey- you're not done yet. But anything that has happened so far that you need to remember because it was a good moment.
Andrea:I have so many, to be honest, that's hard to name just one. And I'm thankful that I have so many. If I were to name things more recent, as she's declined, as you've mentioned, you know, she has become more childlike, and in that childlikeness, there's kind of like she's rediscovering so many things for the first time, kind of like how a parent watches a small child watch a balloon float up in the air, and you just it makes your heart swell. And there are little moments like that every day where she discovers something new, or she gets curious about something, and I watch her mind, like, work with it, figure it out. And that is sweet to me, it's bittersweet, but those childlike things, you know, when she calls me "Mama," and it's bittersweet, but it's also very, very tender, because she knows that I'm her person. In that you think of a mother and you think protector, you know "Mama's gonna protect me. She's gonna look out for me, she's gonna provide for me at night." I just hope that that's what she means, in a sense, when she calls me Mama, she knows that I'm the person that's going to love her and take care of her, and I am and so those little things.
Virginia:Well, you're doing a great job.
Andrea:I'm trying.
Virginia:Oh my goodness,
Steve:Yeah, I would add only that it's obvious that you found a level of joy in this whole process that is not easy. But when you find it, I do this talk on caregiving, and one of the things I learned myself was you have an unusual opportunity in life to provide love to someone who loves you in a way that very
Virginia:wonderful guest to help people out there, and few people can deliver it. And you're obviously doing a fabulous job, so congrats. that's what we're trying to provide for the caregivers out there. Anything else you want to tell us before we leave?
Andrea:I mean nothing other than just to encourage caregivers to remember that your loved one matters. You matter as well. And we talk so often about how we can't pour from an empty cup, and that is so true. We can't give love and give energy where there is no love or energy to be given because we're tapped out. But also, there's a way that you can walk through life to be able to support the personhood of the person that you're caring for and also support your own personhood. And I think if there's anything that I'm very passionate about, it's about that because, unfortunately, we all know how this road ends, and at the end of the day, when it's done, the person you have left in your life is you. And you want to know that you can still be able to stand on your two feet and move forward and make your loved one proud and live a life.
Steve:Well and it will have changed you. It will make you a better person you are obviously, have grown as a result of this relationship, this caregiving job that you've did.
Virginia:Yes. Well, we hate to say goodbye, but it's time. And to our listeners, thank you for listening today, and please hit that subscribe button or like if you have a chance, and we will be back soon with another episode of Spotlight on Care.
Steve:Spotlight on Care is produced by the University of California, Irvine, Institute on Memory Impairments and Neurological Disorders. UCI MIND. Interviews focus on personal caregivingjourneys and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention or treatment should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information, visit mind.uci.edu.
