The Shape of Care Episode 4
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Welcome to The Shape of Care, a podcast that explores the world of caregiving. In this series, we look at who does the caregiving in the U.S. and why this work is so important. So far, we’ve spoken with caregivers, and met with experts and innovators who work on these issues nationally. In this episode, Laura Barr talks about caring for her wife, Jean. And about her unique approach to a very challenging situation. I’m your host and the creator of this podcast, Mindy Fried.
Laura: A long time ago, Jean had brain surgery for something completely unrelated to Alzheimer’s, but there was always something just a little bit odd after that.
Mindy: That’s Laura Barr. Laura and Jean have been married for 39 years. And they have two children. It wasn’t clear to Laura for quite a while that Jean had something wrong with her. But Jean started having problems at work. She was an administrator for a small non-profit.
Laura: I was going in after work with her to try to help her get the books together and stuff like that. At that point, it became pretty clear that there was something going on that was really not normal. [1:22]
Mindy: Eventually, things got so bad, Jean was fired from her job.
Laura: That was sort of the culmination of her having made a lot of mistakes and a lot of just having a hard time figuring things out.
Mindy: So, Laura took Jean to a doctor. And eventually, Jean was diagnosed with Alzheimer’s Disease. Laura wasn’t surprised. She knew the signs. Both her parents had had the disease.
In 2018, around 5.5 million Americans were living with Alzheimers. That’s 1-in-10 people over age 65. Another 5 percent have early onset Alzheimer’s. That’s when people have symptoms before they turn 65. Unfortunately, Jean was among that group. She was 60 when she was diagnosed. The disease can develop slowly. But in the end, Alzheimer’s damages most areas of the brain: memory, thinking, the ability to problem-solve, language, movement, even personality. Laura was worried about how Jean would handle the news of her diagnosis.
Laura: But there has never been the time that we had the fraught, tearful conversation about her having had Alzheimer’s. In fact, the day that she got diagnosed, we were walking around in Somerville, to a neighborhood that we had been in before, and she said ‘didn’t this used to be you know whatever the restaurant was’ and I said ‘Yeah you’re right it used to be that.’ And she goes, ‘not bad for someone with Alzheimer’s, huh?’ And she just sort of took it in stride, in a strange way, which is not really how she had been before that, you know. But she did.
Laura was relieved. Jean still had her sense of humor. But she had one big worry: Jean loved to drive, but her driving was getting worse. Initially, Laura tried monitoring Jean’s driving by putting a tracker on the car. It allowed Laura to follow Jean’s whereabouts in real time. But ultimately, she knew Jean’s driving had to stop. So she got creative.
Laura: She really wanted to drive. But she just wanted the ability to know that she could drive. I think she was even a little bit worried about driving and so, she would put up a big stink about it, but what I did was gave her the key to the car that doesn’t start the car, you have to have one that has a little chip in it to the start the car. So I said you know here you have the keys, whatever. And she never even tried. So I had been so worried about that conversation. But once I thought of that trick it was just really not an issue after that.
Mindy: They could still have adventures. Laura bought a camper and every weekend, she and Jean would take off on a Saturday morning and drive a couple of hours to a campground. When they got there, Laura would build a campfire and make dinner.
Laura: That was just really fun and Jean really enjoyed it. [6:32]
Mindy: But eventually, it got to the point where camping was too hard for Jean, and that meant it was too hard for Laura.
Laura: Like getting her to sit in a specific chair it would just take forever. She couldn’t really follow those kind of directions anymore and still can’t. Then we just started like taking long drives and listening to music and things like that. But you know I just tried as much as I could to concentrate on it being as fun as possible.
Mindy: Caregivers have different ways of coping with the stresses of the job. Some people need to exercise or go on outings, spend time with their family, or attend support groups. But even with these coping mechanisms, many caregivers struggle with depression. Laura made a conscious decision.
Laura: Knowing myself, I just couldn’t allow this to be terrible, because I couldn’t handle it if it was, I couldn’t handle it. It was just sad and really hard ’cause I’m just not built that way, you know. So I pretty much decided that it was going to be as good as it possibly could.
Mindy: Still, things were getting tougher as Jean’s disease progressed.
Laura: It’s hard when people’s facilities start to fail and there’s just so little that they can do anymore or take pleasure in or Jean couldn’t read anymore. She was watching television which we had you know really enjoyed in the past, It just wasn’t the same for her anymore she couldn’t follow plotlines and sometimes she would just be staring at the TV. But I knew that there was really nothing happening.
Mindy: So, Laura looked for other ways to engage Jean. She decided to get a dog. And she named him Panda.
Laura: The dog you know got us out of the house to take walks around the block and it’s very funny and it loves her to bits. It’s always jumping on her lap and licking her face and it’s just been you know it’s just been a distraction kind of you know but a happy distraction [9:32]
Mindy: Over time, there were more signs that Jean’s disease was progressing. She’d forget to turn the stove off; she’d leave doors open. She had trouble figuring out how to use her cell phone. And she stopped making meals for herself. So every day, Laura would make Jean’s breakfast before she left for work. She’d come home during the day to make Jean’s lunch, and she’d leave work early to make Jean’s dinner.
But Laura says she was “massively stressed out”. Finally, she hired a home care worker to come in three days a week. But paying out of pocket for all this was becoming a huge strain. Then, out of the blue, Laura got a great offer. A family member offered to pay for Jean to join a DAY program at Rogerson House. This is a Boston-area facility for dementia patients. Laura jumped at the opportunity.
Jean settled in quickly. She was participating in arts and music activities. She seemed happy. Then with some luck, Rogerson staff told Laura that a semi-private residential room was about to become available.
Laura: It was probably a little earlier than I would have otherwise put Jean into a facility, but I couldn’t pass up on the opportunity to take that.
Mindy: The catch was that Jean’s financial assets had to be low enough for her to qualify for Medicaid, which would pay for most of the cost. So Laura had to find a way to spend on medical-related bills. She discovered that she could do that by pre-paying for Jean’s funeral expenses. Jean became a resident at Rogerson House in September, 2017.
Another benefit of Medicaid was Jean could be part of the PACE program: the Program of All-inclusive Care for the Elderly.
I spoke with Dr. Adam Burrows, who runs a program at a community health center in Boston. PACE is designed to support frail elders so they can remain in their homes, instead of moving into an institution.
Adam: We put together an interdisciplinary team that has responsibility for assessing the individual, delivering care, supporting the caregivers in the home and also being in control of all the resources, so we authorize all care.
Mindy: When clients like Jean can no longer live safely at home, PACE helps find secure placements in skilled nursing homes or assisted living facilities.
Adam: And then we have total freedom to allocate resources to do whatever we think is necessary to address the social and functional and medical needs of the individual, to provide whatever support they need to allow them to age in place at home with the optimal quality of life as independent as possible, to have the assurance that all their care needs will be met. But we also assume full risk for all their care, for all of their hospitalizations, emergency room visits, if for some reason we end up needing a nursing home, then we assume the cost of the nursing home.
Mindy: Laura visited Jean about four times a week at Rogerson House. And she always brought their dog, Panda.
Laura: Except for one person there everybody loves Panda. In fact, when I bring her in and they’re doing a group or something the group just stops because all of the people are like ‘Panda, Panda’ and the person leading the group realizes it has to be puppy time then and Panda just walks around and everybody pets her and, you know, it’s really great.
Mindy: Laura outlined a typical day for Jean at Rogerson House.
Laura: They help her get up and at 9 she goes up to the day program and they have programming until 3 o’clock. There’s art and music and discussion groups and it’s really an amazing program. And then at 3 she comes back downstairs to where she lives and there’s still programming, in like hour blocks. What I love about Rogerson is that people kind of move in packs sort of, you know, like it’s very rare that you see somebody just sort of sitting individually by themself. I usually show up after dinner and hang out with her for a couple of hours.
Mindy: Laura invited me to join her on a visit to Rogerson House.When we got there, Jean was sitting quietly in a room of 15 people, as Miss Lygia Angel led a group discussion. Lygia is a Recreation Assistant at Rogerson. She’s been in the field of Dementia and Alzheimer’s care for over 10 years.
Lygia: My educational background kind of melds into this, too. I sort of fell into it and fell in love with it, fell in love with this population. For me it was forgotten population, people used to just be called senile, that was It, ‘let’s call them crazy.’ But there’s so many ways to access these people, these people are so alive and they’re still very valuable and they’re still very intelligent. You just have to learn what functions and what centers of the brains are working and how to access them and how to engage them. And that intrigues me and makes me feel good to bring joy to people.
Mindy: Lygia finds creative ways to engage with residents, especially with music.
Lygia: We do a lot of singing, a lot of music because the parietal lobe is the last center of the brain, the creativity center, is the last center of the brain to go, so I’ll do a name that tune or I’ll simply go dah dah dah dah…and they know it all they can recall it all and then come up with a title, you know, because that part of the brain is still functioning really strong
Mindy: Laura really appreciated what Jean was getting at Rogerson…like how the staff was able to revive her interest in art.
Laura: My son, who when he lived in Boston, he tried so hard to get Jean to do art because Jean’s always been an artist and, you know, as her disease progressed, she just couldn’t do art, you know, you’d put all the stuff in front of her, but It just wouldn’t happen. But at Rogerson, she’s painting these beautiful paintings, just doing amazing stuff really, you know, considering.
Mindy: But Laura worried that staff might not have patience with Jean when she wasn’t responsive.
Laura: There are certain times that she just won’t get up and no matter what you try to do she won’t get up. And I think people get frustrated with that. It’s not that she can’t it’s just that her brain’s not sending her the signals but in five minutes it might be sending her the signals, you know, and so it’s just a matter of just trying to get the timing down and I know that’s hard in an institutional setting where, you know, you have to do all of this by 9 in the morning or, whatever, to be able to accommodate these individual whims. But it’s really kind of the only way to do it.
Mindy: Laura knew she had to be Jean’s advocate in these situations. And that could be tricky.
Laura: It’s kind of a fine line to walk in a way, you know, because you don’t want to create a situation where they just look at you and say ‘oh god, here she comes again,’ you know, and so I try not to complain too much, not that there’s so much to complain about, but I have sort of held myself back a couple of times.
Mindy: Laura had an additional challenge. She had to adjust to living alone.
Laura: I’ve been in a committed, monogamous relationship, every single day since I was 17. And so, now I’m not, well, I mean, I don’t know, am I in a relationship? It’s sort of a, you know, hard thing to decide. I’m certainly not interested in being in a different relationship at this point. But it’s just, you know, I’m making decisions for myself, I don’t have to triangulate with people: you know, the kids, or Jean or anything, I just, you know, make up my mind and do what it is. And that’s all kind of new for me.
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Mindy: Next time on The Shape of Care, you’ll hear a surprising update on Laura’s story.
Laura: That was the thing that spurred everything else on, is that I needed a facility that had a lift that could get her in and out of bed every day. And so that’s what happened.
Mindy: I’d love to hear your story of success or lessons learned. Maybe you have a question about caregiving. Or how to navigate the care system. Get in touch with us. Our phone number is: 6-1-7-600-87-90, that’s 6-1-7-6-0-0-8-7-9-0 or e-mail us: at contact@theshapeofcare-dot-org. We’ll try to get the answers and include them in Episode 6 of this series.
You can discover more about this series, connect with us on Facebook, Twitter and Instagram @the-shape-of-care. And to find out more about the people we’ve interviewed, read The Shape of Care Blog and see lots of caregiving resources at the-shape-of-care-dot-org. This project has been a labor of love, with the support of friends and family. If you like what you’re hearing, please support The Shape of Care financially at the-shape-of-care-dot-org.
The Shape of Care is produced at Whiskey Lane Productions in West Roxbury, Massachusetts. Helen Barrington is the Executive Producer; the mix engineer is James Donahue; and our assistant producer is Alex Birch. Special thanks to podcast advisor, Lisa Mullins. Sarah Wasko created our logo, Kate Krosschell developed our marketing plan, and Maggie Taylor is our marketing consultant. Our theme music is “Break Out” written by Josh Rosen. He performs his composition on piano, with Stan Strickland on sax and percussion. Other music in this episode is by Blue Dot Sessions. I’m your host and the co-producer of this podcast, Mindy Fried. See you next week.
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