Two families approach their roles as caregivers with a combination of tech, ingenuity, love--and in one case, a very smart little dog.
Caregiving in a Digital World
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: 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.
In this series, we’re going to talk about what it means to give significantly of yourself to others.
So many of us are doing this--by looking after a parent, a grandparent, a spouse - or a friend.
This kind of care can make an enormous difference in somebody’s life. Yet the people doing it often feel invisible.
So we’re shining a light on caregivers and everything they do.
Over the course of eight episodes, we’ll meet caregivers from different economic situations and ethnic backgrounds. Some live in rural communities, some in big cities.
They range in age from their early thirties to their late seventies.
All of them welcomed me into their homes, sat down with me, and opened up about some very private parts of their lives.
They do a lot. Sometimes at the expense of their own wellbeing.
We’re going to meet a young woman who finds that since she started looking after her father, dating is not what it used to be...
TEASER: 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 out there that they talk about called ghosting. Like I've gotten people just like ‘poof!’
We’ll learn how challenging it can be when a longtime partnership that used to be equal, becomes less so...
TEASER: What bothers me or makes me sad is that I can’t be the partner I was. And I feel different now when I try to hold her up and say things will be OK. Because they won’t be OK.
We’ll also see how relationships can deepen when people are looking after one another...
TEASER: I actually am able to sit and talk with my mom and spend time with her in ways that I never was when I was a kid, so that just feels very special. Just yesterday my mom said, ‘you’ve given me a new life.’ And I said, ‘well, you gave me life.’
And we’ll meet one woman who won’t let her husband’s disease define their relationship.
TEASER: I will never forget the first time somebody referred to me as Mark's caregiver. I was furious because I said, I am not his caregiver. I'm his wife.
AM-T: When I met these people everyone had adjusted - or was adjusting - to a new reality.They’re doing the day to day things to take care of their loved one while also trying to take care of themselves.
One thing that linked many of the people you’ll meet was the everyday technology they adapted to help look after someone.
They use it to stay connected, and also to make their own lives a little bit easier.
That’s what we’re going to look at in this first episode: caregiving in the digital world we now live in.
Even if you grew up analog, it’s hard to imagine a world without smartphones.
And there’s a growing market for tech aimed squarely at caregivers... from apps that help coordinate care or manage medication, to systems that help monitor an older person at home.
The thing is...it turns out most caregivers aren’t actually using this stuff. In an AARP study from a few years back, people surveyed expressed interest in using technology designed to help with caregiving. But less than ten percent said they actually did so.
One reason for this is that lots of people don’t think of themselves as caregivers.Amy Goyer is AARP’s family and caregiving expert.
AMY GOYER: So if it's a caregiving app, they don't think it's for them, only because they're like, ‘I'm just a daughter helping my dad, or I'm a spouse doing something for my spouse - it's what you do.’ So that’s the first challenge, is to help people identify and realize that this is something that can help them with what they’re doing in their life.
AM-T: As AARP’s expert in this area, it’s Amy’s job to think about caregiving...but it’s also been her life.Amy is in her late fifties now, and she started looking after her grandparents when she was in her early twenties. Later on she took care of one of her siblings, and both her parents in their old age.
AMY: Now I'm helping my sister who has an autoimmune disease, and my aunt and uncle a little bit and my neighbors a little bit, you know. So once a caregiver, always a caregiver.
AM-T: She says for years, she was just like the caregivers in that AARP study on caregiving and technology use. She was so busy with the day to day tasks of caring for her parents, the thought of weeding through tech reviews and learning a new device just didn’t appeal.
AMY: ‘I don't have time to go through it all and figure it out and install things.’ And it just feels like another thing to do, an overwhelming thing for many people. And for some people it's accessibility. They just, they don't even know that these options are out there. They don't know where to find it, they don’t know how to purchase it and get it set up, etcetera.
AM-T: Price is also a big factor.
You can download some caregiving apps for free...but technology to help make the home safer for a senior, or to allow an adult child to monitor a parent from afar - that can add up to hundreds of dollars or more depending on what you set up.
And Amy says much of it depends on broadband internet.
AMY: You know, we cannot forget that we still have people in parts of this country who do not have good internet access. So many of these products in the home in particular rely on wifi, rely on that type of service.
AM-T: So caregivers’ use of technology tends to be based on what’s already available to them--and what they already feel comfortable with.
Take Amy for example. She used all sorts of technology in her every day life - computers, a smartphone, a tablet, various apps. But she didn’t want to download a specialized caregiving app. She already used Evernote, the note-taking app, so she just added a caregiving section inside it.
AMY: And the same with my to-do list app. I have a section for work, a section for personal, a section for caregiving tasks, and I prefer to have that than one app that's all the caregiving things in one place, because then I have to use two different apps.
AM-T: To give you a bit of background: Amy’s mother had a stroke at the relatively young age of 63, and as she got older she had more health issues related to that. Her father eventually developed Alzheimer’s.
Amy’s job for AARP is based in Washington, DC, but ten years ago she moved to Arizona, where her parents were. At the time her mom was 82 and her dad was 85. At first she and her parents lived separately, but after a few years they all moved in together.
And when it came to day-to-day care for her parents, she did what she’d done with the apps on her phone: adapted technologies intended for something else.
One of the first things Amy did was to install an audio monitor in their bedroom so she could hear them during the night.
AMY: We call them baby monitors, I don’t like to use that term because they’re not babies, but it’s, you know it’s an audio monitor - you hear the sounds, and then you have a receiver by your bed.
AM-T: She didn’t realize how much she relied on that system until something went wrong.
At one point the monitor stopped working, and Amy was so exhausted after a hospital stay with her mom she couldn’t drag herself to the store to buy another one right away. Instead she asked her mom to ring a bell if she needed her. But that backfired.
AMY: In the middle of the night I woke up hearing her fall in the bathroom. And she had not rung the bell. She, you know, she forgot, didn't understand, forgot to do it. And if I'd had that audio monitor, I would have heard her getting out of bed. And she fell and fractured her spine in two places, she couldn’t walk.
AM-T: That injury led to a cascade of other medical problems.
But even when she got a new monitor, Amy felt like it wasn’t enough. She was waking up not just when her mom or dad sat up or got out of bed...but whenever they moved during the night. And her dad turned over a lot.
AMY: So I eventually set up a video camera in the room as well so that I could monitor next to my bed on my iPad or my smartphone. I could see them in bed so that I could really not only hear, you know, I would hear them moving and think, ‘Oh, they're getting out of bed,’ and I'd jump out of bed and run over and they might just be turning over. So it was really helpful to have the visual as well, so that I could see if Daddy was just turning over or if he was really getting out of bed.
AM-T: If he was just turning over, she went back to sleep.
Amy’s mother died in 2013.
But her father lived for another five years.
AM-T: One night, something happened that led Amy to get creative with technology once again.
She had hired a paid caregiver who was sleeping in a room close to her dad, and the audio monitor was in the aide’s room, not Amy’s.
Amy had been hoping for a solid, undisturbed night’s sleep.
But in the middle of the night, she heard her father outside her bedroom door.
AMY: I rushed out and I heard him speak, kind of shuffling on the ground, and he had gotten up to go to the bathroom and got turned around on the way back and he couldn't find his way and he was very upset.
AM-T: After that incident Amy got a motion sensor - originally designed for home security, to detect intruders.
AMY: And I put it on a bookcase in the hallway so that if he did, you know, head in the wrong direction when he went to the bathroom, then that alarm would go off and we would hear that and know that he had gotten a little too far.
AM-T: Along with the visual and audio monitors in her dad’s room,she also put in a floor mat alarm: it would go off when he got out of bed and stepped on the mat.
Amy says this combination of devices finally let her relax a bit.
AMY: I literally did not have a good, deep night’s sleep for a very long time till I had multiple things in place. And, and that's partially because of the worry that it was...it relieved me from constantly being concerned that I was going to miss something. And that's huge. I mean that changed my life and my health situation, being able to get good sleep.
AM-T: Amy also realized she and her father could both use sleep aids- like a deep sleep meditation app that helped both of them drop off.
Like a lot of caregivers, Amy had slept poorly for so long she herself used to get sick all the time. Now, with the help of technology, she was taking better care of herself--so she was feeling better, and that allowed her to give more to her dad.
AM-T: Using technology to help care for her parents gave Amy Goyer peace of mind.
And if using technology to help look after care for someone is about adapting what’s already out there...the Roberts family of central Michigan has gone one step further.
Mark Roberts was diagnosed with early-onset dementia several years ago, when he was in his early sixties. It was a huge blow. But the family gradually re-grouped. Mark’s wife Brenda says they want to live as well as possible for as long as they can. So she and Mark now share a house with their eldest daughter Tracey and her family.
BRENDA: She says all the time, I don’t know we didn’t do this before. Why did we wait until dad had a diagnosis to do this? Because it works out so great.
They saw taking care of Mark as something they could all do together - along with a tech-enabled dog called Sophie.
Brenda : This is my husband Mark.
Ashley: Hi, is this Sophie?
Brenda: This is Sophie. Say hi Sophie.
Brenda: [+ Dog sounds] Oh, yes...Say hi. Come here...oof…
AM-T: This small, white, fluffy pup is indispensable to Mark and Brenda, and not just because she’s a charming companion. Sophie is a service dog - with the help of a professional dog trainer, the Roberts are training her to perform tasks to help Mark. And anything that helps Mark helps Brenda.
Mark and Sophie are together nearly all the time. So Brenda says she put a GPS device in Sophie’s collar.
BRENDA: She wears the GPS, so I get notifications on my watch and my phone, when they would leave the yard. Now Mark is still able to drive in our own community, so it tells me no, he’s at church - Sophie’s at church, Sophie’s at McDonald’s, it tells me exactly where they are. Now you can do that with wearable GPS for a person living with dementia, but the person is more likely to take stuff off.
AM-T: But because Sophie and Mark are inseparable, Brenda can be sure that when she’s tracking Sophie’s movements, she’s tracing Mark’s too. She says they read up on how Sophie and Mark might bond so that she’d never want to leave him.
BRENDA: We’ve been really surprised by how right we’ve done it, because Mark picked out Sophie when she was two days old, out of the litter, and he would go visit her when she was still with her mom, and just hold her...and so it’s like oh, she was getting Mark’s scent at that point in time...so he would just go visit her and hold her. Then when we brought her home for the first 30 days he literally tethered her to him, so she was never more than six feet from him.
AM-T: It’s the same today. Sophie is usually at Mark’s feet or on his lap. Brenda says pretty much the only time they’re apart is when Sophie is being groomed.
And this little dog can do a lot more than help Brenda keep track of Mark. They’re training her to do lots of things, including running to get help if Mark needs it, and bringing him his medication from a cupboard and putting it back again.
Brenda says having Sophie, training her and equipping her with GPS doesn’t just mean she’s less worried about Mark’s safety. The dog also helps keep Mark social, because so many people want to talk to him when he’s out with her.
BRENDA: Oh! Go through the drive-in window at McDonald’s and Sophie’s in the back seat, and the person at the drive-in window says, hi Sophie! And I said, you know Sophie? They said, ‘Oh yeah, your husband orders the same thing every morning, so we know it’s Sophie and we fight over who gets to take his order to him.’ So how great is that?
BRENDA: Crazy, huh?
AM-T: You’ll hear more about Sophie, and how she helps the Roberts family, in episode six.
And aside from Sophie, the Roberts have a pretty active social life. They eat out, Mark still sees old friends...and they hang out with new ones via video link.
Mark and Brenda say it’s been hard to find families affected by dementia who are taking the same creative approach to the disease they are. But Mark says they’ve gradually found people in other states and all over the world who think like them.
MARK: And it don’t cost you a lot of money, you don’t have to go drive there or whatever. You can meet with people on the internet...
AM-T: He says they use Zoom, the video communication tool, to chat with other families who share their philosophy. This is one of those 21st-century tech innovations that would have been impossible not long ago--but that makes a real difference to them.
AM-T: Brenda describes herself and Mark as care partners.
Even though she’s doing more for him than she used to, he still cares for her and the rest of the family too.
But now that his brain isn’t working the way it used to, some of the things he’s always done aren’t as easy for him.
And here again, everyday technology is helping.
Mark is a skilled mechanic. Traditionally he has been responsible for starting the generator during a power outage - something that has been known to happen during a Michigan winter. But Brenda says this kind of task is getting harder for him.
BRENDA: Right now Mark is doing well. He might be able to go show you how to start the emergency generator. But if he’s having a bad day, or he wakes up in the middle of the night, he’s not gonna be able to...and the lights are out and there’s all these other complicating brain factors...and Brian’s at work…
AM-T: Brian is their son-in-law, who also lives in the house. She says if Brian is out, and Mark can’t do it, no one is going to be able to start the generator when they need it.
Thankfully she says their daughter Tracey had an idea.
BRENDA: So Tracey got smart and made a video... of how do you start the generator. So either he can watch, or we can watch it. And we can do it…
AM-T: She just used the camera app on her phone. So now, even if Mark can’t do the job, they’re covered.
Brenda says Mark also keeps himself entertained with tech - it’s hard for him to read now, so he uses the voice function on his Kindle to read to him. When he feels overwhelmed by what’s going on around him, he zones out by playing solitaire on his phone.
Brenda knows this level of independence won’t last forever, and that Mark will be able to do less as his illness progresses. But these small life hacks are helping everyone in their multi-generational household focus on what they CAN do as a family living with dementia, rather than what they can’t.
AM-T: Amy Goyer of AARP also tries to focus on the positive. She says that even if someone’s illness is advanced, you can still have fun together.--and nurture your relationship.
After her mother died, Amy cared for her dad for several more years as he became more frail and affected by Alzheimer’s and a loss of sight. She always tried to treat him as her father, not as a patient...
AMY GOYER: Especially with dementia, people tend to say, Oh, he's not himself anymore. Well, my dad changed and certainly there were different, his skills and abilities changed, but he was still him. And his behaviors might change because of being afraid, scared, confused. But he was still Daddy who'd been my dad my whole life and I treated him that way. I think that has a big - a lot to do with how the interaction goes and how the experience goes, that I still gave him a chance to be my dad and give me a hug when I needed one too.
AM-T: That made him happy. And she wanted that - and to feel happy herself. And she did that by trying to appreciate even the smallest interactions with her parents.
AMY: You know, like the moments like when I would tuck my mom in bed and she was just, she would just look so happy and secure and I knew she felt safe and taken care of...and you know, you can easily be busy and just rushing around trying to go to the next thing and miss those moments.
AM-T: She also made an effort to create those moments herself--they’d watch a movie together, or she’d bake with her parents, take them out for coffee...
AMY: Later on with my dad sometimes it was just being with him and I had to get still and really understand that for him, sitting and holding his hand was all he really wanted at that time. But that was, it gave me joy to be able to give that to him.
AM-T: Human connection still at the root of caregiving…even in a digital world.
Since the coronavirus upended our lives, most of us are using technology more than usual. Amy Goyer says caregivers who haven’t used tech in the past are embracing it for the first time.
The Roberts family was ahead of the game. They’re hunkered down at home in Michigan. Brenda and Tracey have always worked from home so it hasn’t been a big change for them.
Mark isn’t going anywhere at the moment, but technology is still a big part of his life at home and it still helps Brenda.
She says right now Mark is helping to test out some technology designed especially for people with dementia.
And she’s grateful that he has that opportunity, something to keep him occupied while she and the rest of the family protect him from the outside world.
You’ll hear more about the Roberts family in episode six.
On our next episode, we'll meet a woman who's caring for her father while navigating young adulthood:
TAPE/ANGELENA: it is like, 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.
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.