THE SHAPE OF CARE, EPISODE 5

Mindy: 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.

I spoke with Laura again, a few months after our initial interview. She told me, Jean had done really well at Rogerson House for over a year. Then something odd happened. Jean started to have episodes where her body would go completely rigid. And no one – not Laura or staff – could move her. At first, Laura tried using a trick – she’d ask Jean “are you tall?” And Jean would nod her head. Then Laura would ask her to prove it by standing up, and Jean would stand up. That worked for awhile, until it didn’t.

Laura:  A couple of people in passing mentioned that it was very likely a sort of a typical stage that some people with Alzheimer’s do go through. But I kept trying to think you know is she scared. But she had no indication of fear on her face at all. She would smile some of the times and you know people would be saying “come on, let’s get you up” and she’d be laughing and saying “OK, OK.” But she just couldn’t do it.

Mindy: Laura spoke with staff and they suggested giving Jean a little more time at Rogerson, to see if something might shift. But nothing changed. Jean still wasn’t able to get out of bed, and her health was declining. At that point, Laura was crystal clear about what needed to happen.

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: Once again, the PACE program played a pivotal role. Jean’s case manager recommended a few skilled nursing homes for Laura to check out. And Laura, along with their daughter, Maddie, visited a couple of them. They were relieved when they found one that they liked. Right before Jean was about to leave Rogerson, Maddie had a dream. She was taking her mom on one final tour of their Boston neighborhood of Jamaica Plain. And with the help of Rogerson staff, Maddie and Laura were able to make that dream a reality.

Laura:  They got like five people in there including the janitors everybody, and they got her out of bed and got her dressed, so when we got there that morning she was in her wheelchair and we got her all wrapped up because it was pretty cold and wheeled her through Jamaica Plain, got ice cream at JP Licks and a sandwich at City Feed and stuff like that it was it was pretty beautiful actually. It was nice. 

Mindy: Moving Jean to the nursing home was the right decision.

Laura:  It’s a new facility and it’s very filled with light. The hallways are wide. The rooms are kind of hospital like rooms, she has a hospital bed, but there’s built in cabinetry for her clothes and closet, and that kind of stuff. So it just has a nice feel to it, you know. And it overlooks the water. 

Mindy: Laura goes to see Jean every day. I asked her what these visits are like.

Laura: Does she recognize you still? Laura [10:35] Well, she lights up, she lights up still. Usually, it’s because I have Panda and I’ve put Panda on her lap and Panda’s licking her and she’s trying to get away from Panda, but laughing the whole time. But then she’ll just sort of start talking, just kind of nonsense and it sounds like she’s telling a story, but it doesn’t really make any sense. Her affect is definitely less happy than it was, but she’s still, you know, she’ll still smile and laugh and stuff like that which is really great. 

Mindy:  Jean can’t feed herself anymore, but luckily for Laura, she can get out of work early, in time to feed Jean dinner.  And then they just watch TV or relax together. 

Mindy: it’s an evolving story isn’t it. It is an evolving story. Laura: Yeah, it’s it’s amazing. Like I never even thought about all the steps that would be involved and all the different decisions that have to be made and you know all that. Mindy:  Is this the last place she’ll live, do you think? Laura: Yeah. They’ve assured me that there there’s there’s not anything likely to happen that they wouldn’t be able to deal with there. 

Pause…

Laura:  Clearly, she’s closer to dying than she was, you know, a few months ago. Like much closer to dying than she was a few months ago. 

Mindy: And that makes it harder.

Laura:  I don’t think I was in touch with the sadness of it while I was just running around doing everything. And at Rogerson, Rogerson was a pretty happy place and so it didn’t really seem sad to me there. But it’s definitely getting sad now. 

Mindy: Laura’s still very much engaged with her own life now. But it’s not uncommon for people caring for spouses to think about life after their partners are gone. Laura thinks about camping. 

Laura:  I mean I feel like I do have my plan which is that I’m gonna retire and go full time in my RV for some amount of time. And I’m really looking forward to that. And so, that’s my plan. It’s not very well filled out, but that’s sort of part of the Zen of it is that it’s not going to be filled out. I’m just going to hit the road and see what I see and, you know, talk to people and find out what I should see and and those kind of things. You know, there’s a little anxiety around that but also not, because it’s a familiar thing that I’m doing, too. I’ve I’ve been doing this for a long time and I’m just looking forward to it. 

Mindy: The camping plan is now Laura’s lifeline. 

Laura;  I’m still clinging to it. You know, I have a lot to get through before I get to that and I know that, and it’s not going to be fun or easy. And it’ll be really sad, but I feel like I’ll be okay. 

Music 

Mindy: Navigating the care world is hard. It’s emotionally draining to watch someone you love decline. And there’s a lot to figure out: What are the best options for care? What can you afford? How do you negotiate care with other family members? And often the last thing we think about, but just as important: How can you care for yourself when you’re caring for someone else? 

MUSIC BUMP

Mindy: Here’s a piece of my own story. My father lived in an assisted living facility in the last year of his life. Right after we moved him there, he got really sick. He was taken to a local hospital, where they diagnosed him with congestive heart failure, renal disease and weak lungs. My family and I had no idea he was that ill and I don’t think he knew, either. I spent days at the hospital, sitting by his side, keeping him company. I wanted to make sure he was comfortable and well-cared for. He’s always been an avid reader, but at that point, he was legally blind. So I read to him. And he loved it. It was also satisfying for me, because I knew I was making him happy – despite where we were and why we were there.I also learned about the importance of making friends with hospital staff – each of them – and treating them kindly. First of all, they deserve respect because they’re doing important work. They’re also pulled in a thousand directions, so they’re overwhelmed. And some of them have a lot of power, so you want them to be on your side. Sometimes, I’d get incredibly frustrated with the quality of care my father was getting. Staffers could be brusque with him. Others took forever to respond when he needed something. At one point, my father got a serious infection. The nurses told him they were going to quarantine him in another room. He got furious and he told them he refused. I asked the nursing staff if we could slow things down a bit. I convinced them that I could convince my father. Then I took the time – time staff didn’t have – to explain to my father why it was better for him and for everyone if he moved. And I added a dose of reality –  that they were going to move him anyway – so he’d feel better if he gave them his consent. Somehow that worked. He told the nurses he changed his mind, and they thanked him. I was shocked, and relieved. I had managed to de-escalate things – so my father would be safe, and the staff would be able to protect other patients. In that moment, I did my best to ensure my father was cared for with dignity.

MUSIC

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 6-1-7-600-87-90 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.

Next time on The Shape of Care, we’ll meet the Executive Director of Rogerson House, learn more about Laura and Jean’s relationship, and the problem of homophobia in elder care.

Dale:  We consider institutions, nursing homes, to be what we call “institutional closets.” And the experience of most out LGBT’s when they go into institutions is to go back into the closet.

MUSIC

Mindy: 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. 

Theme Music, ends cold or fades out