Four generations of the Roberts family live in one house in central Michigan. They use the house itself, off-the-shelf technology, and other creative ways to help look after a family member with dementia, even training their very cute Bichon Frise to be a service dog.
4 Generations + 1 Cute Dog
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:
Multiple generations of a family living under one roof is how we all used to live. In a lot of countries it’s still the norm. It’s more unusual in the US, but in recent years the number of homes where parents, kids and grandparents live together has been growing. And when kids need looking after, or an older person gets sick, living with family can be transformative.
BRENDA ROBERTS: We decided we're going to live well with dementia and we're going to make the best of it. So we never see people like us.
AM-T: 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 episode, we really get to know the Roberts family -- who you first met in episode one. They’re taking a positive approach to a tough diagnosis - together.
AM-T: Brenda Roberts has been married to her husband Mark
for more than 40 years. They married young - she was 19, he was a few years older- and raised their two daughters here in a rural area near Alma, Michigan, right in the middle of the state. Mark is retired now. Brenda works for the Michigan Assisted Living Association, mostly from her home office, which looks out over a cornfield.
BRENDA: My daughter loves the chickens, I totally don’t get it…
AM-T: Brenda’s husband Mark has dementia. He has problems with reasoning and comprehension, and some trouble remembering things. He was diagnosed about five years ago…and the family decided that to take care of Mark the best they could, they’d build a house a whole bunch of them could live in together.
BRENDA: So now we're really, we are so proud of this house because it is a four generation dementia-friendly home. How cool is that? How many people can say there's four generations in the house?
AM-T: So how is a home dementia-friendly? Mark and Brenda’s daughter Tracey says for one thing, their house is divided into two sections inside by a pair of double doors. These connect her living area to her parents’.
TRACEY: So the doors could just be open and he could freely come back and forth as he progresses…
BRENDA: Yes, so these double doors open into our living room, so we can open the doors and when he needs constant supervision, I don’t have to say to him, come to this side, and I don’t need to say to them, go to that side…
AM-T: Brenda and Mark are in their sixties; they live on one side of the house. Tracey and her husband Brian live on the other - they’re in their 40s and have two sons, Brandon and Justin, aged 19 and 17, who live there too. And there’s a very new member of the family - Brandon has a one-year-old daughter.
BRENDA: How can you have a baby in the house and not be happy?
AM-T: As we walk around the ground floor, Brenda points out that her daughter has the bigger kitchen...
BRENDA: This is Tracey’s kitchen...I have my kitchen too.
TRACEY: It’s on my side, but this is where everybody eats...we have dinners together....
AM-T: Sitting at the table on her parents’ side of the house as a fan whirs in the background, Tracey says her dad was always there for them... and their neighbors.
TRACEY: Super helpful, if people needed anything he would go and fix things, plumbing things for people for free, he...super helpful and loving guy. And I would say he was a leader in our faith and our family.
AM-T: She says he always had a hot temper, though - and it was that temper that came out more and more as Mark began struggling at work. Brenda says for 25 years he was the mechanical director at a small private college.
BRENDA: Mark had been a model employee, employee of the year, started, you know, scholarship funds with students, involved and active and all that kind of stuff. And all of a sudden he became the guy that nobody wanted to be with. I mean he was a…
MARK: I got angry.
BRENDA: Yeah, I think that's the thing, one of the most common things, I can't speak for everyone, but it’s frustration, you don't understand what's going on. Why are the guys at work not liking me anymore? Why is my opinion no longer valued? Why? I don't understand. I don't understand. You know, and he came home on two occasions, right? Do you remember coming home and asking me?
MARK: Right, one time I came home and I asked her, I said, what is dementia like? ‘cause I've got five calendars in my office and I still can't remember what I got to do. And she was just, ‘eh, you know, it's your hearing or whatever, you know, you're just, you're not getting it.’
BRENDA: Well, the one thing I have to say is what's so significant about that is not just any wife said, ‘Oh, you don't have dementia, you don't have Alzheimer's.’ I have 40 years experience of working with older adults and people living with dementia! And I did not see it in my husband. I did not recognize the symptoms because what is it that you think of when you think dementia? You think memory loss.
AM-T: Whereas Mark had trouble with thinking and comprehension. He was angry and frustrated because he knew something was off, but no one knew what it was - least of all him. He lashed out at the people around him. Brenda says she’s learned since then that many couples where one partner has early-onset dementia, like Mark...they end up getting divorced before they get a diagnosis.
That almost happened to them. Things got really bad six years ago. Mark was more and more volatile. One day he and Brenda were doing some home improvements when he lost it, threatened to go get a gun. After that incident, Brenda moved out. But she knew something had to be wrong, that this wasn’t just Mark’s usual temper in overdrive. She might not be living with him, but she wasn’t going to abandon him. Brenda found local professionals to help them, and Mark was eventually diagnosed with vascular dementia. His issues were being caused by decreasing blood flow to his brain. It was a blow but also a relief to know what was going on. And even though they both had counseling, and Mark apologized to his whole family for the hurtful things he’d said and done, Brenda wasn’t sure she would ever go back.
BRENDA: During the counseling process I had decided I really wasn’t ready, I really wasn’t sure...like, you’re trying to separate the disease from my husband...I really wasn’t sure I wanted to still be with him.
AM-T: They were apart for more than a year. But they talked regularly, and gradually Brenda’s feelings changed. When their daughter Tracey suggested they all live and care together, Brenda said yes.And as they began their new lives as two families in the same home, living with dementia, Brenda and Tracey scoured the internet for positive role models. But they had trouble finding any.
BRENDA: We don't see people like our family living well.
I mean, after we got the diagnosis, that was the best thing that ever happened to us is getting the diagnosis, and then learning, OK, so we definitely went through this dark period, but then we decided we're going to live well with dementia and we're going to make the best of it.
AM-T: One way they do that is through Sophie, Mark’s service dog. If you listened to episode one you’ll have met Sophie before - she’s a small, white, fluffy Bichon frise, about 18 months old. Mark is a big guy of six foot two. They’re devoted to each other. Whenever they’re out together people come up to Mark to talk about Sophie. And the Roberts are working with a trainer to get Sophie to perform tasks that can help the whole family with Mark’s care. Especially as his condition progresses.
MARK: So she finds [dog sounds]...She's working on finding me. We're practicing now, going outside and like if I got, if I was just outside and wander down the road, when I get bad enough or whatever, I can tell her ‘home’ and she'll take me home. Um, so she has a GPS on her so if I got lost or a whatever, Brenda can look on her watch or Tracey and they can find me. Uh, when I leave the yard now it signals Tracey and Brenda that I've left the yard and they can see if I went to McDonald's or I went to the farm store or to a friend's house, so they know exactly where I'm at at all times.
Brenda : It’s very nice. It’s...so I get it on my watch or I get it on my cell phone, either one.
AM-T: Mark’s dementia means it can take him a bit longer to get his thoughts out, and Brenda sometimes jumps in.
BRENDA: And Mark still drives in our community. And so like if I'm out of town for work, um, and I know he had an appointment, it'll tell me. Okay, so Mark left for his appointment...he's at his appointment...he's now at home. So I know if he's keeping on his schedule or not.
AM-T: That brings her peace of mind. So does the simple fact of having Tracey and her family so close. There are layers of care in this house.
TRACEY: I’m Mom’s counselor...
BRENDA: Yes, yes!
TRACEY: Her emotional support...she went through a lot of denial, she still does...and so she comes back to me, I’m real matter-of-fact reality, ‘this is what’s going to be done’...and she’s like, ‘are you sure? I don’t know…’ So a lot of it is mom support.
AM-T: Tracey says by moving in together and being proactive in approaching her dad’s illness, they want to show other people what’s possible. She and her mom have written blogs and posted videos about their lives on YouTube.
TRACEY: To show you can live well and live happy, and we chose to laugh and we choose to tease and not live in this gloomy, ‘oh, this is what’s gonna happen’...so what? We’re living in today, and we’re fine. We’re still together, and I think even when he gets to the point where he doesn’t recognize us, we’re still here, he knows we’re here, he can feel us inside.
AM-T: Mark is happy that so many people he loves are right there whenever he needs them. And if the hubbub ever gets to be too much he just closes the doors to his and Brenda’s side of the house, to get a bit of peace and quiet. But even in private, he’s surrounded by familiar faces. Their part of the house is covered with photographs - even inside the closets...
MARK: There's nothing more important to me than my family. And of course you can go through all my closets... that was the first thing I asked Brenda was to tape up pictures. I don't wanna forget the kids. And so she’s taped all these pictures up all over and I do stop every, you know, three or four times in the week. And I look at those pictures to bring my memory back, the good times, of what I was capable of doing and that I was a loving father and that, you know [clears throat], no matter what, I always protected them and that I would do anything for ‘em.
AM-T: The feeling is mutual. Tracey says one Christmas she made a family photo album for her dad and wrote a poem to go along with it.She called it ‘Our Journey’...
TRACEY (reading from her poem): When the time comes that you can't recall, I will be your memory. You loved us with all your heart and soul. You taught us our names. When the day comes that you do not remember my name, I will teach you. I will be your memory…You once carried us as infants, protected us in your arms, I remember...
AM-T:
Brenda says Mark was incredibly touched when he heard the poem for the first time.
BRENDA: I read the poem out loud and Mark's hugging her, somebody took a picture. I'm reading, Mark and you are hugging, Daddy and you are hugging, and it's over her shoulder and tears are just streaming down his face as I'm reading that poem. But it wasn’t sad tears...kinda sad tears.
TRACEY: It was a huge mix of emotion...
BRENDA: Also love tears...
TRACEY: Yeah, it is love, it is switching of roles, there is a little bit of sad, yeah...but you can’t focus on the sad all the time. You talk about it, get beyond it, and let’s just get in the saddle and go.
AM-T: Mark is doing well for now. He and Brenda and Sophie travel to conferences several times a year to talk about their experience with dementia and encourage other families. He wishes it wasn’t this way, of course - this is not how he and Brenda had planned their retirement years. It’s a huge adjustment for both of them, for all of them really.
ASHLEY: What’s your two’s relationship like these days?
BRENDA: The two of us?
AM-T: At this point Tracey leaves to go back to work and we change seats, but I don’t want to lose the thread of this conversation…
BRENDA: Oh boy, this is a scary question…
MARK: What was the question again?
BRENDA: Never mind! [laughs]
ASHLEY: No...how’s your relationship?
BRENDA: You and me...
MARK: Well, I'm not going to say it's, uh, real smooth for Brenda. It's very stressful for Brenda and I know that, but I...it's just hard to, to give up on a lot of things, and our love is changed.
AM-T: He says in the past he did a lot for her, she did a lot for him.
MARK: It’s always been an equal partnership. So, and I think that's 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 okay, because they won't be okay.
AM-T: He knows he’ll be able to do less and less, and Brenda will need to do more and more. At this point Mark gets up to take Sophie out for a quick walk, and Brenda and I are alone. So I ask her the question again.
BRENDA: What about me and the relationship? [Few seconds pause] It's definitely different. Where we used to talk about something and make a decision...So I can talk to him now about it, but I have to make the decision. So it's definitely not equal partnership anymore, you know, so that's hard to lose the person that you always talked to about, to help you make decisions. So you either make them by yourself or you...um, so consider, I talk to him and consider what he's thinking, and he still wants to have a part of it, but then sometimes I have to make it different than what he thinks it should be, so that, that's kind of hard...
AM-T: But you're glad you came back and did all this?
BRENDA: I'm definitely, that's what I was gonna say, I'm definitely glad and committed to our marriage. I mean I came to that decision. I mean we separated, we parted, we worked on it. And so it was a real process, but I'm not living with Mark just because he has dementia. So we came together and healed our marriage, you know, and our relationship. But it's always changing. So that's why, like, such a long pause about what is the relationship like now, because it's just so different. But yet there's so much history together and shared memories and shared things. And the one thing about him, to me though, that's kind of a sad thing that I think I observe in other people living with dementia too, is if they recognize what their partner's doing for them, they also recognize that their future really is contingent upon that rrr partner.
AM-T: Mark doesn’t just rely on Brenda to look out for him - he’s got his daughter, son-in-law and grandsons too - still, it’s Brenda he relies on most. And she’s begun to think about what might happen if she wasn’t around.
BRENDA: I mean, I think that, I don't know that we've ever really had a conversation about that. Hey Mark, do you, if, if I died...
Mark: Yep.
BRENDA: Do you assume you’d stay here and live with the kids, or...
MARK: Nope.
BRENDA: Okay. Yeah. Y’know, so I don't think that's an assumption...that was if we live together here, we're together…
MARK: Right...
BRENDA: But if something happens to me, it doesn't guarantee that you're going to live here and the kids are taking care of you. ‘Cause that's a whole different scenario. And I had thought that living with the kids would help me keep Mark at home longer, which may be the case…
AM-T: Then again she says it may not, because she knows caregivers can get burned out. Caregiving is a family affair in this house, and Brenda wants to protect family members like Tracey and her husband.
AM-T: Do you feel like you’re getting worn out?
BRENDA: No, but what I'm going to say is I think that since I live with my kids, if I see it's taking a toll on them, I am more likely to say we need to do something different than if it was taking a toll on me. So I have somebody else's interests at heart besides just the two of us, because if I see it's a strain on that marriage next door, you know...we have to consider everybody's lives.
AM-T: The whole family has looked at an assisted living facility nearby, and they liked it.They’re glad to know it’s there, but there are no plans to change anything about their current living situation. Brenda says one of the ways she stays positive is by NOT thinking about her husband’s illness all the time.
BRENDA: When I see a change in Mark, I don't automatically say, ‘Oh, that's the dementia.’ If I start to see a change in him, that's like different, I look at, he's diabetic, how's his blood sugars? Is it high, is it low? Is it this? Is it that? How's it been running? What is his diet? So I'll look at that. Then I'll think about is he getting enough sleep and has he been up at night. Okay. That could play a role in it. And then I look at, Hmm, has he been social? And I've learned that we have a social pattern. And so when the kids are in a sporting event, we have plenty to do. The sporting event comes to an end and all of a sudden Mark’s social life is over. And I'm still busy working. So I didn't pay that much attention to it. So all of a sudden now he's watching more MASH. He watches MASH all the time…
AM-T: She says she doesn’t want Mark to spend too much time slumped in front of the TV, but keeping his social life going is a challenge - she and Tracey both work full-time. Mark is an avid fisherman and she’d love it if someone would take him fishing, but that hasn’t happened much lately. One thing she knows makes him happy is continuing to do things for other people. Being helpful has been Mark’s life.
BRENDA: And so he wants to do for others, he specifically wants to do for me. And so it's real easy to just take over and let me do things. So I have to say, does he have meaning and purpose? The boys are mowing the lawn, doing this and doing that and all the things that he used to do, and so even little things like, I really like ice tea. And so Mark never comes home without bringing me an ice tea.
AM-T: She says it’s a small act of kindness, but it means a lot to both of them.
BRENDA: I mean it would be real easy for me to just say sit down and you know, stay there. It's just so much easier for you to stay there. Um, but yeah, that's something that I kinda discovered on my, I had to discover, ‘cause I was not allowing him to do for me. And how can a relationship really go on? I need to let him continue to do that as much as possible so we can, it's not a balanced relationship, but so that it can still be a relationship. Two sided.
MARK: Yeah, meaningful relationship.
ASHLEY: Plus he still loves you. He's giving you...it's not all you guys tending one way with nothing coming back at you from Mark.
BRENDA Well that's 100% right. 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. I might be his care partner because he's cared for me all these years and I care for him and we care differently. And I don't see that really changing.
AM-T: She says the term care partner fits better with their relationship, even if she is helping him more than she used to. Meanwhile, she says, one of the care partners in the house is four-legged. She’s been sitting quietly on the floor next to Mark the whole time we’ve been talking.
BRENDA: Sophie has been a relationship changer - right?
Mark: Yup.
[Dog panting sounds…]
BRENDA: OK, so here’s the story…
AM-T: Brenda says they already had one dog and she didn’t want another one. But when she saw Mark with her younger daughter’s new puppy, she realized caring for the dog was doing something for Mark. Then they met a woman with dementia and her service dog at a conference, and that was it. They got Sophie and began to train her. They both light up when they talk about Sophie. Sophie and Mark are together almost all the time. But they’re training her to trace Mark by his scent, so if he ever gets lost when his disease gets worse, she can find him.
BRENDA: And to Sophie it’s a game, it’s find Pa, and she runs around the house and she gets a treat.
MARK: Well she tracks me, she looks for the scent, she picks up and tries to sniff the air for it, not on the ground.
BRENDA: What she typically does is run to where he was last - I say, find Pa, she’ll run to the chair, he’s not there, she’ll have to sniff him out...she’ll almost always go to the last place they were together, and she’ll have to problem-solve from that.
[Sophie growls]
MARK: Yeah, we know [laughs]
BRENDA: Oh, and the other thing I love, love, love, is she runs into the bathroom, opens the bathroom cupboard, and gets her medication out - gets your medication out.
MARK: Yup. And then goes and puts it back.
AM-T: Mark’s meds are kept in a low cupboard with a tea towel tied to the handle - so Sophie can grab the towel and pull the door open with her teeth. This sounded almost too good to be true. So I asked for a demonstration.
BRENDA: Hey Sophie get it - no get it, get it! Get it, get it honey, go on honey...
MARK: Come on, baby...
BRENDA: Get it Sophie!
MARK: There you go...
BRENDA: Get it, get it, bring it here...
Ashley: Wow…
BRENDA/MARK: Bring it here...Good girl, Sophie...go get it…
AM-T: Brenda and Mark don’t know how Mark’s disease will play out. They think that having Sophie, training her, and keeping him busy are all helping to slow the development of Mark’s dementia. They also know things will change. But after 43 years together, they’re sure of one thing.
BRENDA: But Mark about our relationship, do you feel like you're loved?
MARK: Oh yes.
BRENDA: And you feel like you love me still?
MARK: Oh yeah. [Brenda laughs] Yeah. That, that hasn't, um, that's always been getting stronger the older we get. Um, and I try to be more sensitive to Brenda than I...because of the dementia. And I still like to be around Brenda, I drive her nuts being around. But, um, I wouldn't spend it any...I wouldn't do anything different. Because this is the way our relationship has always been and our love has always been for one another.
AM-T: Since the pandemic hit, Mark’s life has changed a lot. Because he has some underlying conditions the whole family is especially protective of him now.
He’s no longer going out to McDonald’s, church, or the store.
Brenda says his cognitive abilities have dipped because he’s not getting the stimulation he used to.
As you heard at the end of episode one, Mark is trying out some new technology aimed at people with dementia, so that’s helping to keep him busy.
And Brenda says they’re even more grateful now to have Sophie, and to be living all together as a family
On our next episode, we’ll meet a neurologist whose years of training left him unprepared for what happened to his father’s mind.
DANIEL POTTS: I didn't have the vision at that time to see remaining gifts and talents and remaining expressions of personhood until Dad showed me his own personhood in the throes of the disease.
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.