Episode 2 Transcript

Darlen Wagenius:  I was looking for a caregiver and you’re going to laugh. I am a Christian fundamentalist, I guess, but I was looking for someone and I prayed and I said, Lord, I want somebody I can trust, but I don’t want a Muslim. 

Mindy Fried:  This is Darlen Wagenius. She’s 78 and lives in Washington state. One day someone introduced her to Shazia Anwar, a caregiver originally from Pakistan. 

Darlen:  And I just kind of fell in love with her. And then I find out she’s Muslim. And I went, thanks a lot. 

Mindy:  Shazia has been taking care of Darlen for the past five years. 

Darlen:  Within the first day, I loved her. Then I fell in love with her. And I adopted her into my heart as a daughter. And I think of her and respect and I hope treat her like a daughter and her children as my grandkids. 

Mindy:  Hi, I’m Mindy Freed, and I’m back with a new season of The Shape of Care, a podcast about caregiving. In Season One, we followed the lives of two caregivers. They looked after their partners who had degenerative diseases. Because they were caring for family members, they were unpaid. Over the next four episodes we’ll bring you into the lives of two care pairs, two paid workers, and the people they care for. And we’ll focus on two very different worlds of care: nursing homes, which many of us wouldn’t want for ourselves, let alone our loved ones; and home based care, which is what most of us would want, right? To stay in our own homes, to get services as we need them, and to stay close to everything and everyone that’s familiar. So that’s where we’re going to start. 

So where are you right now? Can you just kind of situate me? 

Shazia Anwar:  We are in her living room and she’s on her recliner and I am sitting next to her. 

Mindy:  I spoke to Darlen and Shazia on Zoom. I could see the two of them clearly. At one point, Shazia touched Darlen gently on the shoulder and then rested her hand on Darlen’s arm. I could see Darlen’s kitchen in the background with its yellow cupboards graced with pretty water pitchers on top. 

It’s so fun coming into people’s homes, you know, in this virtual way. 

Nearly 2.3 million care workers provide personal assistance and health care support to older adults and people with disabilities in their homes. The need for home care workers is projected to increase dramatically in the next decade. That’s because baby boomers are becoming seniors. And a lot of them, or should I say us, will need care. Darlen has advanced Parkinson’s Disease and other serious health issues. Her previous caregiver needed to cut her hours, so she asked Shazia to take over. Initially, Shazia worked part time with Darlen. 

Shazia:  In a two weeks, actually, we just got so close, like mother and daughter thing. 

Mindy:  It turned out that the job entailed a lot more than she expected. Darlen’s husband, Joe, also needed help. 

Darlen:  Well, my husband is a very big man. He weighed about 500 pounds. 

Mindy:  The case manager for Darlen and Joe came in to do an assessment. She determined that they’d need more than 40 hours of care per week. Ultimately, Shazia ended up working 60 hours a week. 

Shazia:  I became a caregiver for both of them. 

Mindy:  Darlen and Joe are devoted to one another. They met at the trucking company where they both worked. 

Darlen:  My husband, my relationship with him. Man, what can I say? I’m married to my best friend. We’ve been best friends since we got married. Was it perfect? Absolutely not. But he’s always been there. Always been there for me. 

Mindy:  But it took Joe some time to warm up to Shazia. 

Shazia: He was shy, and he didn’t want any females around him. 

Mindy:  But Joe grew to trust Shazia. 

Shazia:  I just told him. I said, Joe, never feel shy. The reason, you are sick. You need help and never think like I am female. I knew your problems. I knew you were having so many issues. But we have to make sure you are healthy. 

Mindy:  Shazia’s job as a home care worker is to support clients’ health needs in the home, but it also makes it possible for them to stay at home. She began to work closely with Darlen and Joe’s case manager to solve all kinds of problems that arose. Like getting a bed that was big enough for Joe. 

Shazia:  For that it took me six months

Darlen: Six months. 

Shazia:  Yeah. So I get his bed. I don’t know how many places I go. 

Darlen:  And we still, we. 

Shazia:  Still weren’t able to get the big bariatric bed. We could only get the single. 

Mindy:  It took three people, Shazia, Darlen’s case manager and Darlen, to figure out a solution to this problem. 

Shazia:  And the weather is changing in Washington. Now it’s getting hotter in summer with extended heatwaves. Before we don’t have our air conditioning. This is not the easy thing to do. And so I go for so many different channels to air conditioning for both of their rooms so they can sleep. 

Mindy:  Over time, Joe’s health began to spiral downward. 

Darlen:  He worked in the trucking industry for years, and he blew out his needs. She needed replacement, but they couldn’t replace because of his weight. 

Mindy:  Then Joe started to fall. In one week, he fell four times. 

Darlen:  That’s what did it. The medics said that they couldn’t leave him home that time, pick him up and put him back in his bed. They had to take him to the hospital and it was determined that he had to go into a rehab center. 

Mindy:  But when Joe got to the rehab facility, his situation got worse. 

Darlen:  Somebody was trying to change his linens and it didn’t fit. And she yanked the sheet and it flipped him out of bed and. 

Shazia:  He just fell down because he was right on the edge. They should be have that side rail. But there was nothing on their side. So that’s why he just fell down. 

Darlen:  Four feet or so onto the floor. He landed on both his knees, his elbows and his forehead. He hasn’t been able to walk since. 

Mindy:  Darlen was furious that this happened. But with her own health problems, she felt helpless to do anything about it. So Shazia spoke with staff on her behalf. Shazia didn’t start out as a professional caregiver. She was just taking care of her mother in law, who had recently emigrated from Pakistan. 

Shazia:  Because there was so much language barrier for her, and she was very sick and no family members here and she was living with me, so I started taking care of her. I spend all day in a doctor’s appointment, labs and things like that. 

Mindy:  Then two things happened that led to this work becoming Shazia’s career. One day the doctor asked Shazia if she was her mother in law’s professional caregiver. 

Shazia;  I say, What is that caregiver? And she said, the person who take care of their family member, parents and they are appointed by the state. 

Mindy:  And the doctor asked Shazia. 

Shazia:  Why not you become a caregiver for your mother in law?

Mindy:  Like many other states, Washington state allows aging individuals to hire family members and friends to care for them. The caregiver just can’t be a spouse. And the care is covered by Medicaid. That’s the government health insurance program for people who have low incomes and people with disabilities. Shortly after the doctor’s visit, Shazia ran into one of her neighbors who asked how her mother in law was doing. 

Shazia:  I told her, My mother in law need full time health. And my doctor said, is a caregiver. And I go and she said, Oh, no problem. I am a case manager. 

Mindy:  Her neighbor worked for the State Department of Social and Health Services and she gave her a number to call. 

Shazia:  I just call that number. Leave a voicemail and just talk to a brief message. And you are not going to believe. People say they don’t call. I receive call in 30 minute. 

Mindy:  The following week, the case manager came over and did an assessment of her mother in law’s health needs. Shazia got the go ahead to get paid through the Medicaid program, at least initially for 140 hours per month of caregiving. 

Shazia:  You can imagine how much need she was needed that time, and I was providing her and I didn’t know I can take care of her as a caregiver because of her health issue. 

Mindy:  But the case manager told Shazia that because she wasn’t related by blood to her mother in law, she needed to get licensed as an independent provider. She’d have to pass a state exam and get 75 hours of training. 

Shazia:  Literally, Mindy, that time. I was totally don’t understand so many things. I was just trying to thinking what she is try to explain it to me. 

Mindy:  So Shazia has grown kids, guided her through the process. 

Shazia:  Then got things worked out well. I signed up for my classes. I get the 75 hour training paid by State to get my license. After that, I went for a state test and I passed that test. And then I got my license by the state. And that’s the way I become a caregiver. 

Mindy:  One day, Shazia got a call that solidified her career choice in home care. It came from the biggest union in Washington state that organizes long term care workers. SEIU 775. 

Shazia:  I didn’t know. What is SEIU that time? I don’t even know I have a union or something. Someone just called me and they invite me for a kind of a union meeting. I said, okay, I will come and I will see. When I went to that meeting, there were so many other people work there. I just heard all the things about the union and what’s going on and what we are getting because of all our union. I said oh! I didn’t know actually I had a union and are all these things. 

Mindy:  The Union Local was founded in 2002. At that time, homecare workers in Washington state, for the most part, had no benefits, no health insurance, no worker’s comp coverage, no paid time off. They were considered contract workers and had no taxes withheld. Twenty years later, nearly 80% of homecare workers in Washington state are paid through state funded Medicaid. They have affordable health insurance if they work at least 20 hours a week. They have paid time off. They have worker’s comp coverage and they have taxes withheld normally from their paychecks. Adam Glickman is a top elected officer in SEIU 775. 

Adam Glickman:  Most legislators have never met a home care worker 20 years ago. You know, I think that has now dramatically changed. 

Mindy:  He told me that the union mobilized workers to meet with policymakers to push for the kinds of policy and budget changes they needed to improve wages and working conditions. 

Adam:  I’m sure every legislator in Washington now knows who homecare workers are, knows at least the basics of what they do. Most, if not all of them, meet with homecare workers from their district every year. There is a voice for homecare workers in the policy arena in Washington state that, you know, just didn’t really exist 20 years ago. 

Mindy:  SEIU 775 now represents over 45,000 long term care workers in Washington state and Montana. Three quarters of these workers provide care to elders. Shazia was impressed with what the union was doing for homecare workers like her. 

Shazia:  So I sign up there, I say, okay, is there any program or anything? I just wanted to do that. 

Mindy:  The union offered Shazia a three-month internship. Her charge was to contact members, share with the union, was up to and encourage them to get involved. 

Shazia;  I was so excited and then I started learning, Oh my God, there’s so much we are doing and so much need to be done. 

Mindy:  Shortly after Shazia, his mother in law, died, one of her union friends encouraged her to apply for a home care job through an agency. This would give her a steadier income. She already had the necessary training and license. On her first day, her supervisor sent her out to meet a prospective client. 

Shazia:  So I went there. You are not going to believe this was a very different experience in my life. I still remember today. I knock that door. 

Mindy:  The woman opens the door.

Shazia: She starts yelling. I didn’t say anything. And she was yelling, yelling, yelling for five, ten minutes. Then she was done. Then I said, I say, I just come to talk to you because I just want to know who you are, who I am, how, when we can start working together. Very polite way. I didn’t say anything. Okay? I can take my bag and just go walk away from there. No. After that, she just said, Oh, sorry. 

Mindy:  Shazia learned that before she met this client, ten other caregivers had refused to work for her because of her temper. But Shazia tapped into something.

Shazia:  Her thing, loneliness. I was just giving her at least one hour listening to her story again and again and again. You are not going to believe how many times I heard those stories, but I always I just sit by her because she was a lonely person. I heard those stories a thousand times and just act like I just listening for the first time. 

Mindy:  Shazia could see through this woman’s anger. It’s that kind of sensitivity and compassion that she now brings to her work with Darlen and Joe. Darlen’s living at home, but Joe remains in rehab, bed ridden. The two of them have not seen one another for over a year. Even Shazia couldn’t visit Joe until COVID protocols eased up. 

Shazia:  And two weeks ago. I see him after one year. 

Mindy:  When she arrived at the rehab facility, she slipped into his room. 

Shazia: In the bed, he was half asleep and they said, Joe, this is Shazi. And he just jumped from his sleep in bed and he start crying and he said, Oh, my, Shazi is here, my Shazi is here, and we just have a fist bump because hug because of Covid because I just want to hug him. And he want to hug me and I just sit with him. And then I realized people from the rehab center, they came into the room and they said, this is Shazi! 

Mindy:  To her utter surprise, Shazia discovered that Joe had told them about her. 

Shazia:  And there’s all you are the famous Shazia. I didn’t know everybody in that rehab knew who I am, even their manager came. He want me to sign something. And then, oh, you are the Shazia. We heard so many things about you. And I said, okay, so everybody know me here, who I am, and this is kind of a relation I have with both of them. 

Mindy:  The more Darlen and Jo came to trust Shazia, the more responsibility she took on. 

Shazia:  I take care of all his decisions now. 

Darlen:  Shazia my husband’s power of attorney. 

Mindy:  Darlen says she and Joe wanted that. That kind of arrangement where a paid caregiver has power of attorney can raise red flags. There’s the potential for abuse. Shazia says she wasn’t sure about it at first. 

Shazia:  I was really worried, too. And the thing is there. It’s not like they just put me there. It was a long procedure and the time when Joe wanted me to be his power of attorney power, he was not my client anymore. So that social worker, Joe talked to her. 

Mindy:  Joe’s social worker discovered that all of his family members had passed away. And Darlen didn’t have the capacity to take on that role. 

Darlen:  I needed to know he had somebody that could be there for him to advocate for him, because I can’t do it anymore. 

Mindy:  The social worker approved the arrangement and Joe signed all the paperwork so Shazia could become his POA, but only for health care matters. 

Shazia:  They always say I am their daughter and that’s the thing. I am a person of color and they both are white. You become very, very close to each other. It’s like a family thing. And now my kids are their grandkids. And if you take care of someone from your heart, if you show them your respect and everything, a relation automatically become very strong. 

Mindy:  In the beginning of this episode, we heard Darlen say that when she was looking for a caregiver, she expressly did not want a Muslim. So I asked her, If you don’t mind, I just wonder like, what was the notion you had of what Muslims were like? 

Darlen:  Well, I bought into a lot of the news media and of course, ISIS was top on the list of things that were so bad about Muslims, and the Taliban. And I don’t know, so many things that you hear the negative so much more than you hear anything positive. And I had viewed her in a negative sort because of what I had heard. I found that to not only be not true, but far from it. Far from it. 

Mindy:  As long as she can. Darlen wants to continue to get cared for in her home. She doesn’t want to end up in a nursing home. 

Darlen:  Terrified to go to a nursing home, frankly, because I haven’t heard hardly any good stories. 

Mindy:  In our next episode, we’ll hear how so many people in Darlen’s position are afraid they’ll have to leave their homes because of Medicaid rules. And I’ll tell you about an innovative policy I discovered that can turn that around. 

Do you have a caregiving story to share? A question about navigating the care system. We’d love to hear from you. Our phone number is 617-971-8622. That’s 617-971-8622. Or email us at contact@theshapeofcare.org. That’s contact@theshapeofcare.org. You can discover more about our show. Connect with us on Facebook, Twitter and Instagram @theshapeofcare. And to find out more about the people we’ve interviewed, check out our  website where you’ll also see lots of caregiving resources. Again, it’s at theshapeofcare.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 theshapeofcare.org/donate. You can either make a one-time donation or you could become a monthly patron of the show. 

The Shape of Care is produced at Whiskey Lane Productions in West Roxbury, Massachusetts. Our mix engineer is James Donahue. Special thanks to podcast advisor Lisa Mullins and editorial consultant Jennifer Goren. Thanks to Franky Gonzalez Navarro for assisting with sound and music. Thanks also to Leo Martinez for work on our website and to Isabelle Hibbert for technical support. Our theme music is Breakout, written by Josh Rosen, which he performs 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 creator of this podcast, Mindy Fried.