Tight Knit

Ep. 2: Stepping Up

Episode Summary

Detroit’s Angelena Taylor was only 28 when she became her father’s main caregiver after he had a stroke. This millennial daughter, educator, and former Ms. Black Michigan is focused on her dad while also setting goals for herself: to travel, do fulfilling work, and have her own family.

Episode Transcription

Stepping Up

Before we begin, a quick note. This series was created *before* the COVID-19 pandemic. You’ll hear an update on the caregivers and families you’re about to meet at the end of the episode.

ASHLEY MILNE-TYTE:As people age, or get sick,  family members often step in to help. Maybe it’s a spouse, who’s probably older themselves, or a middle-aged child. But AARP - the organization that advocates for people over 50 - has found that one in four Americans taking care of a family member is much younger than that. They’re millennials … in their twenties and thirties. 

ANGELENA TAYLOR:  put your life and you have to put certain things on hold. But you know, you're my father. I'm gonna take care of you. I love you.

AM-T: But how do you start your ownadult life when you're suddenly looking after a parent, instead of the other way around?

Welcome to Tight Knit, a podcast about the many ways people are working to build stronger relationships and communities.

I’m your host, Ashley Milne-Tyte.

AM-TAngelena Taylor is 32. She’s friendly and self-possessed, with almond-shaped eyes, long eyelashes, and pale brown skin. 

She definitely stands out in public, but she doesn’t get out much these days. She lives with her dad in the house she grew up in, in northwest Detroit. 

Her mom died when she was 18.

She lived at home for college too, and after graduating moved to Florida. 

But her dad had started to have some health issues. Her extended family needed her too. So she came back.

ANGELENA: You know, someone’s always sick or something has happened where I’ve had to be here, so I never ended up having a chance to move out and be on my own, so...that’s my aim. I love my family home but I need my own space.”

AM-T: Angelena takes care of her father, does the housekeeping--AND has her own job. She’s an expert on kids’ autism and works as a special ed teacher. She walks me through the living room…She says she tries to keep it as tidy as she can.


ANGELENA: The house can turn into a disaster very quickly…


AM-T: The room is cluttered with books, magazines and papers piled everywhere. There’s a wheelchair against the wall near the door. Cat toys are scattered about. But over on the coffee table, something glitters…it’s a rhinestone crown...Angelena is a beauty queen, and this crown, sitting in a clear box, marks her reign as Ms. Black Michigan USA 2019.

As the holder of that title, she spent a lot of weekends last year giving speeches, reading to schoolchildren, and using her platform to talk aboutfamily caregivers and the support they both need and deserve - especially young ones like her. 

She never expected to find herself in this position. Angelena is the youngest of seven kids - by a lot. She picks a dusty collage off the mantelpiece.


ANGELENA: That’s my mom and all my siblings before...I think right before I was born… 


AM-T: Her mother worked in a grocery store. Her dad is a retired police sergeant. Even though her day job is about helping other people, Angelena didn’t think her home life would reflect that. Or at least, not before she had a family of her own. But four and a half years ago, everything changed. She’d just started graduate school at Wayne State University and was really busy - going to classes and working part-time as well. Still, she noticed when her dad told her he didn’t feel well. 


ANGELENA: I just remember coming home one day and him saying he had this really horrible headache.


AM-T: She urged him to see his doctor the next day. But she says as usual he was focused on other people, not himself - he said he’d be busy taking her aunt to the doctor that day. He left early, and Angelena headed off to school. On her way home in the afternoon, she called to ask her dad what she should pick up for dinner that night.


ANGELENA: But he didn't answer the phone. So I'm like, thinking it over in my head, like, ‘Oh my gosh, I'm going to be so upset if I get home with something and he doesn't like it,’ because even parents can be picky with what they like to eat.


AM-T: She tried calling again from the store - twice. But he didn’t answer. So she goes home, goes into his room, and finds him in bed.  She starts going through the mail, she’s chatting…and she didn’t realize that he wasn’t moving. 


ANGELENA: And I just happened to turn around and notice that he was looking at me not saying anything. He's a big jokester. He has, you know, played dead essentially before in the past. So I'm thinking, this is one of his little jokes. He's gonna start making faces at me and whatnot.


AM-T: But suddenly she caught his eye-- and he reached for her hand and squeezed it...still silent. 


ANGELENA: And I immediately noticed, you know, the drooping on the side of the face. He wasn't able to talk, and that quick thinking, it was just like, okay, I have to call 911, something's not right.


AM-T: An ambulance came. And at the hospital, doctors confirmed that her dad had had a stroke. He had lost his speech and was partially paralyzed on one side. The events of that day plunged both Angelena and her father into a new life.  They both had to absorb the shock of what was happening to him. But she says the hardest thing for her was suddenly becoming her dad’s advocate, and the chief decision maker about his care, at just 28 years old. 

She says after a few weeks in the hospital, she was told her dad would be discharged to a rehab facility.  She had to pick one. Which made her nervous.


ANGELENA: Not really knowing much about what that looks like...I’ve always heard stories about nursing homes and rehab facilities, and we live in Detroit and we don't have the best of a lot of things here. So it was like a scary thing to have to like put him in one of those. And we did have a very negative experience at his first facility.


AM-T: Her father kept getting infections there, and Angelena decided to move him. After a few months in a new rehab center, the staff told her it was time for him to come home. He could speak again, even if he still couldn’t walk. But the idea of having him back at the house was daunting.


ANGELENA: ‘Cause coming home, I had to arrange the in home occupational and physical therapy, in-home speech. I had to work that around me being in school, I was still trying to work, so I ended up having to take FMLA so I could take care of him.


AM-T: F-M-L-A- - the Family and Medical Leave Act. It allows you time off work to care for a family member and not lose your job. Angelena took the whole 12 weeks she was entitled to. Still, she was unprepared forall the phone calls, paperwork, and the sheer responsibility of caring for her father when she had no medical experience. Her eldest sister was helping out at first, but then a situation came up in her own family and she left. 


ANGELENA: So it was just kinda like I felt, you know, a bit of being alone. No one was really, you know, hands on with trying to make sure that certain things were set up. So I had to make, like, all the calls to get the wheelchair ramp assembled outside and to make sure like everything here at the house was secure for him and safe for him to be here at the house. But had no idea what I was doing, taking care of someone who was disabled.


AM-T: Angelena says the staff at the rehab center didn’t seem to realize that SHE’D be her father’s primary caregiver. They thought that at five foot two, she was too small to handle moving her dad on her own. So they didn’t train her in what to do. But now she was at home, with her dad, thinking, ‘where’s the manual for this?’ He had a feeding tube, and needed her help with almost everything. 


ANGELENA: So it was kind of us winging it and making sure I wasn't hurting him in the process, but I'm like, ‘I have to like slide you down in the bed some type of way. I got to figure out how to change your diapers some type of way.’ So I kinda like figured everything out on my own until one of his occupational therapists was like, ‘You're going to get hurt if you don't do certain things a certain way.’ So I'm very grateful for that O-T that was coming out.


AM-T, ON TAPE: Well tell me, you just mentioned performing these intimate acts, like changing your parent's diaper. How did all that go down between the both of you? Like how did you feel about it? How did he feel about it? Did you feel that you are a natural caregiver?


ANGELENA: Now I do. I think because he's so used to me doing it, he's used to his in-home caregiver that comes in, the part time caregiver that comes. He's fine with her doing it. She's been with us pretty much the whole time that he's been home. But I think because we do, the two of us do such a good job, he's not comfortable with anyone else doing it. So at first it was kind of like, if any other family member, would offer to do certain things for him, he wouldn't allow them to do it. I could literally be gone, you know, at school. And someone else's like here filling in, but he would wait until I got home and it's like, ‘Oh my God, I'm tired. Like I don't want to do this right now. Like, are you serious?’ But you know, obviously I would get the job done, but it's like, okay dad, come on, other people have to do this. ‘Cause it can't just, you know, all fall on me - and I get it. Like, you don't want everybody up in your business. But it lessens the load for me to, you know, have to do certain things when the day has been stressful and I've had to like, do training or something all day, and it's like, I need a break.


AM-T: In the beginning the whole situation was so unusual for both of them, the frustrations would build up. His and hers. 


ANGELENA: I will say we cried a lot and we would fight a lot. Um, there was a kind of like weird dynamic, because I know a lot of times it's very, very difficult to make that transition from like you being the parent to being the one being cared for. You know, being in psychology classes I've read that is a thing as parents age, and as people age or something happens and other people have to take care of you, so I did sense a lot of that happening where it's like he knows that stuff needs to happen. I think a lot of times he would feel like he was an inconvenience, which I would never express that to him. I haven't expressed that to him. It would just always be where if he knew that I was tired, he didn't want to ask me certain things, but instead of asking me, he’d just kinda, you know, bottle everything up, and it would come out as him lashing out at me, and it's like, well, what are you lashing out at me for?

Like, I'm running around, you know, doing all this because I love you and care about you.


AM-T: Facing the anger and frustration of a person who’s depending on you--day in and day out-- is something almost every family caregiver has to deal with.

Angelena says she and her father are learning to express their feelings to one another, and to talk them out. She wants him to know she’s not going anywhere.


ANGELENA: you know, you have to put your life and you have to put certain things on hold. But you know, you're my father. I'm gonna take care of you. I love you. I'm not gonna look at this as that type of inconvenience. It's just, we just have to adjust and figure out what's working. If certain things are not working, then we just have to find something that's gonna work for us.

AM-T: One thing she says that would help a lot? Her family pitching in more. Angelena gets emotional talking about this…she says they used to do a lot together...but since her dad had his stroke, that’s another thing that’s changed. Her siblings don’t come around or help out as much as she thought they would. Her dad is their stepfather, not their biological parent. But she says he’s been there for decades - he raised them, and they spent years together in this house before she was even born.


ANGELENA: I was very upset in the beginning. Um, I would fire off angry group texts to my family a lot in the beginning ‘cause it's like, ‘I need help! I'm stressed out. Like, where are you guys? Like why is no one coming to visit?’ He would be sad a lot of times because no one was, you know, coming to see him a lot of the times or reallylike checking in like they...[crying] sorry, like they could have been, but um, it got easier after a while because it's like, you know, I'm here. I'm doing what I can and,  you know, hopefully he appreciates that.”


AM-T: One other family member has stepped in: Angelena says her aunt - her dad’s sister - she’s been hands-on since the start. She calls him most days. She cooks a lot … and has Angelena pick up the dish and bring it home. She’ll come and visit. But Angelena says her aunt has her own health problems, and she’s the only relative who helps like that. When she wants to leave town, Angelena arranges for her dad to be cared for away from the house. Because he’s a veteran, when she goes away he goes to a respite center...run by the VA. They get 30 days of free respite care per year. 


ANGELENA: Even going there, they know him, they love him, he's very comfortable going there. But even with that, I'm on top of everything. If I see one thing that's out of place, it's like, ‘Hey, what happened? You know, I like you guys, he's always comfortable here, but what's going on?’ So it would be a lot easier if I had a lot of assistance or at least some assistance from family members to be like, okay, Hey, you don't have to worry about this. You know, oh, it's your birthday weekend. Hey, we're going to come over and you know, let's all go do something together as a family. Or, we got dad for the weekend... [voice breaking]


AM-T: She says the family dynamic changed after her mother’s death. She thinks a lot of her siblings couldn’t deal with the loss. It changed their feelings about the family as a whole, and that may be why they aren’t showing up for her dad. Then again, she says, she’s learned that all the help she is giving their father may actually be why her siblings aren’t showing up for HER.


ANGELENA: If you seem like you're doing a really good job with things or you're not like blatantly asking for certain things, people assume that you have it. And that's not an accurate assumption to make. So friends and family listening out there that have a caregiver, you know, someone that's caring for someone, don't just assume, please ask and please help, because we don't always have it together.


AM-T: Angelena hasn’t just felt family slipping away, but friends too. When her dad got sick, like a lot of people her age she was working hard and playing hard - dating someone, hanging out with her buddies, going on trips in her spare time. 

She says most of her friends have been supportive in the years since - they understand when she’s had to cancel plans at the last minute or say no to things when she can’t get coverage for her dad. But early on, she found out that a couple of people, including an old friend from high school, they just thought she was making excuses. They spread gossip, said Angelena was exaggerating the issues - that she’d become unreliable. She could hardly believe it. 


ANGELENA: You're putting your all into taking care of your parent, you're trying to stay sane essentially. You're trying to fight through depression and not being able to experience the same things that you're used to being able to be up and be on the go. ‘Cause this...with my core group, you know, my main friend group, we're used to just being able to call each other up and say, ‘Hey, let's go to Chicago for the weekend or let's go for a cruise for our birthdays.’ But then it's like now, you know, they're planning trips to, you know, other states or doing other things and it's like, how do I set this up ‘cause I had to make sure someone's able to take care of my dad.


AM-T: She says these women didn’t get it because they’d never had to take care of anyone themselves. But that didn’t make the things they were saying any easier to bear. 


ANGELENA: For them to, essentially do what they did and react the way they did - it was kind of like, you're clearly not someone that I need to have around, but you know, it’s still very hurtful for...for someone to experience that during a very difficult time like that.


AM-T: Angelena’s teaching job is full-time. So she’s gathered as many resources as she can to help take care of her dad...A safety net she’s trying to build and strengthen. Every little bit of help makes a difference. For example--when she’s not there, her dad spends most of his time alone in bed, watching movies or napping. To break that up, they have a caregiver from an agency come twice a week for a few hours each time. She’s been with them since her dad got back home after his stroke, so they all know each other. Angelena says the caregiver often gets him to do more for himself than she does, like helping to get himself dressed. And just the caregiver’s presence makes him feel more secure. 


ANGELENA: ‘Cause that was a big worry when he first came home. Even going to the grocery store was kinda like, Oh God, can I leave him at home for an hour? And what if something happens? 


AM-T: Since  her father, as a veteran, does have those 30 days of overnight respite care at the veterans’ center,Angelena’s also looking into whether they can get a second caregiver free of charge through the VA. And she’s made use of technology as an extra pair of eyes when no one can be with him. She started doing this to keep tabs on the house itself--and the wheelchair accessible van they got that she keeps parked outside. 


ANGELENA: Unfortunately we’ve had someone break into our van a couple of times this year, so I got the security cameras and stuff set up. So having those makes me feel a little bit more comfortable being able to watch the house from my phone and be like, okay, who's this walking up and whatnot. So, you know, having that safety portion, I do want to find a way to get another caregiver involved here when his other one's not available, but I need some help just, not just for me, but so he's comfortable 100% here.


AM-T: This van has become crucial for Angelena and her father. It means she can take him to doctor’s appointments herself, without relying on a ride service. And while her father doesn’t always feel like socializing, if she can drive him to see people, she does. But she doesn’t see her own friends much.And she’s trying to think about her own future. 


ANGELENA: As much as I love my dad, I don't want this to be a forever thing where he's not mobile. It could be a possibility that he may never regain his mobility. And then it's like, you know, well, who's going to care for him? Who's gonna do what? ‘Cause I do want to, you know, eventually get married, have my own kids and all that. So in having one of those moments, it's like I need to talk to somebody or you know, is there someone else going through what I'm going through?


AM-T: Lately she’s been able to find people who are. She heard about a support group at a local hospital, Henry Ford Health System, and she now goes regularly. 

She says most of the people in her group are a lot older than she is. But they do share experiences, and they all appreciate being able to vent without being judged.  


ANGELENA: ‘Cause I know my friends love me, but I know they're tired of hearing the same old story. But, you know, just being able to talk to other people, you know, it's very helpful [voice breaking].


AM-T: That support group is one thing that helps Angelena. Therapy is another. She had some experience of therapy after her mom died when she was 18. She says she thought she was fine this time, didn’t need that extra help. Until one day,  a few years back,  a former employer started cracking down on her schedule, nixing any flexibility she once had to take her dad to medical appointments. 


ANGELENA: And I just like completely had a breakdown one day. I'm not one that calls off from work and the one day I just could not go to work. And it's like I need to talk to someone, I need help because if I'm not okay, I can't take care of him.


AM-T: She found a therapist quickly, and that person told Angelena that for one thing, she had to start doing something for herself on a regular basis - so she does. Anything from taking a walk to getting a manicure - one of her favorite indulgences. She also goes on a big annual vacation.  Last year she headed to Bali, Indonesia. 

She says all these things help her feel she hasn’t totally  lost the life she lived before her dad got sick. And there’s a small thing she says has made a big difference. He weighs about 10 pounds and has grey fur and piercing yellow eyes...and claws. 


AM-T: Angelena’s cat Blue is just over a year old. She says he’s a calming influence on both her and her dad. 


ANGELENA: He’s my little cuddle buddy when the day’s been, like, stressful, he’ll come cuddle up to me, and sit on the couch with me, then playing with him is therapeutic too, I get to toss his little toys around with him and he loves his little laser beam. Cats are addicted to those things, I don’t know why, but [laughs] - and my dad will play with him too with the laser.


AM-T, ON TAPE: This is a bit of a change in subject, but just going back to what you said about your friends, it's a bit of a cheeky question, but do you have time to date?


ANGELENA: [laughs] Dating in 2019 is terrible. Um, I have, I've attempted to make time, now whether or not different guys can actually handle what I deal with, it's like initially they'll be like, Oh my God, that is wonderful, you take care of your dad! But then it'll turn into this thing where they... like there's this thing up there that they talk about called ghosting. Like I've gotten people just like ‘poof!’ like they're there and then one minute it's like, OK, where did you...how, why?


AM-T: One of the many things Angelena has learned through caregiving is the importance of sticking around. And that transfers to romance as well. Her priorities are different than those of many young singles...


ANGELENA: ‘Cause this is almost like dating someone that has a child, like, that child comes first. My father comes first. So if I have to take him to therapy or you know, if I have to help him with something at the house, you know, me going out is going to have to wait or it might make me a little late. So I'm gonna always give you a heads up, but you need to understand that's a thing. It's not a you thing. It's a, ‘I have obligations and I'm going to try to make it work the best I can.’ But you just have to, if you can't work with it, you can't work with it. But say that.


AM-T: Taking care of her father has given her a lot of time to think about what she might be looking for in a partner. She’s learned about commitment and what it would really mean to support someone for the rest of their lives.  She’s also learned that both partners have to work at it. 


ANGELENA: I was in a relationship when my dad first got sick, and that was a disaster. I should have separated from this individual when, you know, I noticed like things were getting to be a bit much, but I wanted to maintain that relationship because I really cared about and loved that person. He couldn't handle it, and he cheated on me and it turned into this whole like...that was another thing that contributed to a lot of my depression and whatnot. So dating has not been the easiest. And I don't know how to really balance that out if I want to, you know, eventually get married and have a family of my own. But hopefully there's someone out there that can see past me taking care of dad and looks at that as a positive. as like, ‘if something happens to you, that means I'll take care of you.’ So, you know, it's not an all negative thing.


AM-T:Angelena is careful to name all the positives in her life that help her care for her dad: her support group, her friends, therapy, her cat...and her father himself. He still takes care of her, too. He’s helped out financially when she’s been between jobs, he paid for her car to be repaired when she couldn’t afford it. She says he still gives fatherly advice, and they laugh a lot. She’s given him some advice as well. Like, how about seeing a therapist yourself? She says so far he’s said no, but she still gives him the occasional prod. As her father and, let’s remember, a former cop, he’s a little wary when she does go on a date.


ANGELENA: Having that police background, he was a very strict parent growing up. I wasn't allowed to date in high school. So he's like, no, you don't need to date until like you graduate from college or whatever. So he's been, like, trying to protect me from different things.


AM-T: But he’s getting used to Angelena being there to protect him. A few months ago, when she asked if he was OK going into respite care so she could go away for a few days, he said...


ANGELENA:  ‘Didn’t you just go somewhere? I thought you just got back from DC.’ And I’m like, Dad, that was more so business, that wasn’t like a pleasure trip, that was like, I’m competing in a competition, kind of thing. I want to go somewhere where I can relax and have some time away. He wasn’t upset about it, but he was like, ‘you just went somewhere!’ I think he's still trying to like get used to the fact that I have like this big wanderlust bug and I want to go places, and I still want to be able to manage that and take care of him, but I like to go places [Ashley goes ‘yeah’]...I like to have a life.


AM-T: And Angelena does have a life - back to that crown on the coffee table. When she was Ms. Black Michigan, turning caregiving into her platform was a way of defining what afamily caregiver is. Speaking out made her feel empowered. She says one of the hardest parts of being a family caregiver is that the role is invisible to so many people. She’d felt herself disappearing too. Being able to compete in that pageant in DC, being able to travel, to date - for Angelena Taylor, it all reminds her she’s still young ...and in control of her destiny. She’s determined to improve her father’s quality of life, without forgetting about her own. 


Since Covid-19 hit Detroit earlier this year, Angelena and her dad have been pretty isolated. 

They no longer have an aide coming in to help with his care - it just seemed too risky. 

Angelena did her teaching job from home all spring. She says it was good in one way - she could keep a close eye on her dad and easily attend to his needs. On the other hand...it’s been intense.

Recently she arranged for her dad to go into respite care for 5 days so she could get some rest and get some much needed work done around the house. It’s her first break since March. 

She did tons of research ahead of time about the precautions the facility was taking to ward off Covid-19. She says the benefits outweigh the risks. She can take better care of her father if she also takes care of herself.

On our next episode, we meet a county employee who goes above and beyond for rural caregivers who don’t have a lot of support.


JEN ELLMAN: I come in with these resources that they normally wouldn’t have thought of. And hopefully I’m bringing some life into their home, and that their future doesn’t have to be bleak. 


AM-T: Tight Knit is a project of the Ralph C. Wilson Jr. Foundation.

Our story editor is Diantha Parker. This series is sound designed and mixed by Thrilla Park Audio. And our executive producer is Mikel Ellcessor for Limina House. 

We had production assistance from Mary Sier, Sara Ali and the team at Lafayette American.

The caregivers we’re meeting are just some of the many people out there who are looking after someone.If what you’ve heard reminds you of someone you know, please share this with them. You can find this story and more at tightknit dot org. You can also join the conversation on social media @RCWJRF*. *I’m Ashley Milne-Tyte. And thanks for listening.