Episode 184 – Shaista Kazmi: Serving Elderly Ethnic Minorities

 

Michigan resident Shaista Kazmi has firsthand knowledge of the isolation and guilt felt by millions of family caregivers. But as a Pakistani Muslim, she’s had the added challenge of finding culturally competent home health aides for her elderly family members. To help caregivers like her avoid the same fate, Shaista founded Detroit-based Apna Ghar, the first senior care agency in America dedicated to serving the needs of elderly ethnic minorities.  

Shaista tells us how well-meaning senior care agencies tried but failed to meet the cultural needs of her family members, and how it affected her ability to work and raise her kids.  She shares her first generation perspective on the dilemmas faced by her mostly Indian and Pakistani clients, who speak little or no English and eat foods that are particular to their cultures and unfamiliar to most in-home aides.  Immigrants who came to America with next to nothing, these ethnic minority elders assimilated and built successful lives.  Now they are assimilating in a whole new way, attempting to age in place with dignity but hard-pressed to find culturally competent care or even admit that they need help.

Learn more: Apna Ghar Home Care
Call Apna Ghar: (248) 325-9028

NEW from Agewyz Media!  Life Stories for the Ages

Music: “Chupke Chupke” – Ustad Salamat Ali Khan [Recording Artist: Iqbal Asif]

 

 

 

INTERVIEW TRANSCRIPT:

JANA PANARITES (HOST) – Michigan resident Shaista Kazmi knows all too well the isolation and guilt felt by many of America’s 44 million-plus family caregivers. But as a Pakistani Muslim, she’s had the added challenge of finding culturally competent help for her elderly family members. 

In 2014, determined to prevent others like her from feeling the same despair and isolation, Shaista founded Detroit-based Apna Ghar, the first senior care company dedicated to serving the unique needs of elderly South Asian immigrants and other elderly ethnic minorities. Shaista Kazmi joins us from West Bloomfield, Michigan to share her story. Shaista, welcome to The Agewyz Podcast.

SHAISTA KAZMI – Thank you so much. Thank you so much for having me.

JANA  – So your parents came to the US in the late 60s, early 70s. And you described them in a video I saw, as the American Dream story. I wonder if you could share for listeners a little bit about your background and growing up – in West Bloomfield, right?

SHAISTA  – Yes.  So my father immigrated first, before bringing my mom over, but he was in Canada prior to us emigrating to  United States.  And a friend of his had given him advice, that [was] come to America, what are you doing in Canada? You have far better opportunities here. This was in 1980. And what he decided to do was just put his house up for rent in Canada, come here for six months and take a leave from his job, which – at the time he was director of physical therapy at Hotel Dieu Hospital in Cornwall, Ontario. He came here in 1981, and then he just ever went back.

So we moved first to the downriver area in Michigan, which was at the time a huge hub for a lot of immigrants actually, because they were working at the Ford assembly plant, and they had a lot of opportunities there. My father, though, having a physical therapy background came here, and what he found was that a lot of physical therapy was being done in hospitals. What he decided to do was start his own outpatient clinic. And he was actually one of the first people to start that, had multiple outpatient clinics to where people can have physical therapy done outside of hospitals.  And he started that in about 1981, 1982.

And as time progressed, of course, you know, he ended up settling here, and he just really never went back to Canada.  He used to go and visit his family members, of course, in Pakistan, but you know, he ended up building a life here, a business.  And he always tells me that he came to this country with $200 in his pocket, and he really did. He was successful.  But my husband says the same thing – that he came to this country with $200 in his pocket, and that was in 1996. So I swear both of them are like off with their inflation and everything else. I’m like, I know there’s something off with this story, but they both claim that they had that much.

But with hard work and dedication, my father was able to literally build a huge rehab empire and legacy here in the state of Michigan. And he did expand, to Florida and Chicago. But unfortunately in 2008, he ended up being diagnosed with this neurological condition, which he ended up having to take a seat back to a lot of his ambition.

JANA  – Mm-hmm.  So I know that your mother-in-law came to live with you – 10 years ago was it? – from Pakistan. And so in addition to taking care of or managing, I guess, the caregiver needs of your dad, you also had to deal with your mother-in-law. What was going on in your life when your mother-in-law, first of all, came to live with you 10 years ago from Pakistan?

SHAISTA – So in 2007, his family – my husband is not the oldest. He’s actually second to last of five brother and sisters. So being here in the States, he felt like maybe she would have better options with her medical care and medical needs. She is diabetic, she does have some coronary artery issues, some other spinal issues. So he thought maybe she would have better medical opportunities here in the States. She came in 2007. At the time, my oldest was three, my second son was an infant and I was now pregnant with my third kid.

JANA  – Oh, wow.

SHAISTA  – That’s what she came in. Yep. And when she first came in, because at the time, I was still a stay-at-home mom, my kids were young. Even though I have a medical background and went to medical school, I wasn’t practicing. And I decided to put that, you know, on the back burner. So I was at home and I was able to initially take care of her needs. However, because she came from such a different type of environment -where she was living in Pakistan, she was in a joined family. Her eldest daughter-in-law was working as a teacher at the time, and her second daughter- in-law did not work. Family situations there are far different than they are over here. And so –

JANA  – in what way?

SHAISTA – Well, in the sense that she literally was a stay-at-home mom.  Here, stay-at-home doesn’t mean you’re staying at home.  I mean, here you are a manager of a household, which is doing the groceries, going to the bank, doing everything, going to the kids’ functions and things like that. So you’re really not stay-at-home, you’re, you know, CEO of your home. And over there, literally, if you’re a stay-at-home you’re staying at home.  You’re not going anywhere. You don’t have the opportunities because of, you know, not having the car – that daughter-in-law didn’t know how to drive at the time.  The household [had] one car, and my brother-in-law would use that. So she would literally stay at home.  And her children were small at the time as well.

So when she came to me, it was just a very different type of dynamic that unfortunately, she was going to have to get used to, because I wasn’t going to be home all the time. Then she did go back to Pakistan after I had my youngest.  She came back to us again a few months later, but she ended up having an accident where my youngest was crawling and I think she was trying to run to the bathroom and she fractured her shoulder. Because of that, now we had small kids, my husband was like, why don’t you contact a local senior care company so that they can help you in the home, because it’s going to be too much for you to manage.

And I did. I contacted local senior care companies. And unfortunately, even though they did try their best, they were not able to meet the cultural demands of my mother-in-law.  And the biggest issue was language. For my father, that was not the issue.  Language was not going to be an issue because he spoke English fluently, as does my mom. But the issue for my mother-in-law – she could not speak English. 

The other issue, of course, was the food, the dietary issues as well.  She could not tolerate just soup and sandwiches. I mean, she needs her full curries, her full lentils and rice – that’s for lunch and dinner. For breakfast it was always cereal, so they could manage that, but the communication was horrible. I mean, they could not communicate with one another.

And once my son was born, my youngest, I did decide to go back to work.  Instead of doing, you know, a residency or what have you, I ended up doing research, clinical research in neurosciences.  So I was working at the time as well at St. Joseph’s in Southfield, Michigan.  It’s part of the Ascension Health system. So I was working there as a clinical research coordinator. And my hours were not too much. I mean, I was still doing like about five hours, three or four days a week, but for her to be left alone with a caregiver. It was really difficult for her. And every time I’d walk in the door, I literally would have to redo the whole day.

I literally would have to redo the whole day, because they could not make the food. And then there was just too many issues with communication. There was frustration on both ends, I’m sure.  And so, you know, we kept trying different caregivers. And eventually what I did was I contacted, well she’s – one of my best friends is an immigration attorney here in Detroit, and in her mosque there was a lady looking for a job. And she asked me, Do you want somebody to come into the home a couple of days a week to help you out? And it was a perfect opportunity. And that’s when this lady started coming.

And it took literally three years for us to find somebody from the mosque to take care of her. But once that happened, I noticed how things were so much easier for me in the sense that I could walk in, her food was made, she was happy, she was dressed in her clothing – because you know, they wear shalwar kameez – so she was more comfortable in that.  And it helped a lot with her social isolation. 

Because now this woman and her could speak her language, they were watching her TV show, they would have long discussions about the dramas that were happening, their soap operas, which are ridiculous, but still, she was like, you know, totally engaged, completely happy.  And we felt like we had finally come to terms with everything.

So that was back in 2014, where finally everything had come together. And I thought to myself, I really can’t be the only person in this situation. There has to be other people. Regardless of what happened, I know I’ll always have two patients – one would have been my father, and one would be my mother-in-law, and I should start something which could help elderly ethnic minorities, and the unique challenges that they face. So that was in 2014.

JANA  – I want to back up just a second.  Were you actually preparing food for your mother-in-law, and like traditional food?

SHAISTA – Yeah.

JANA – Wow, because that’s time-consuming.  And preparing food isn’t something that all in-home aides necessarily do.

SHAISTA – No, not at all.

JANA – I mean, a lot of them just help with activities of daily living, so you wouldn’t necessarily expect them to be making food.  But in your case, and in the case of other ethnic minority families, the food can be a real critical piece.  So we you making the food as well, even when you had help from the senior care agencies?

SHAISTA  – Yes.

JANA – So you were making – preparing food and then going off to work, and then your kids were being cared for by whom?

SHAISTA – At the time they were going to Montessori.  The youngest – so thankfully, my mom lives 15 minutes away from ourselves.

JANA – Oh, that’s good. Okay.

SHAISTA – So, she would watch him. You know, initially when my father was diagnosed with Multiple Systemic Atrophy, MSA – the term before that was Shy Drager, and it was under another spectrum. So it’s under the Parkinsonian umbrella.

JANA – It’s like Parkinson’s… right.

SHAISTA – With Parkinson’s-like symptoms.  But unfortunately it’s just really debilitating. And so initially when he was diagnosed in 2008, and I knew, based on all my medical background and my research background, that he would not be confined. He was not confined until the last three years of his life – to bed.  And he was still mobile with a walker and things like that. So the kids would be at – with my mom, with of course, the assistant was for my mom as well.

So my dad didn’t require that much care at the time. So as the kids were growing up, I was really lucky that my dad had not gone downhill as much as he did starting in 2016, was where he started taking a drastic turn with his disease.

But yeah, so it was making the food and they didn’t know how to iron her clothes because it’s a different type of material, a different type of [unintelligible].  So it was a lot of keeping up.  And like I said, they were very open.  Some of them.  Because as you know, with these caregiving agencies as well, there is a huge rotation of caregivers. There’s a revolving door of caregivers.  Every time there’s somebody different.  I mean there was multiple times where my kids were getting late to school, which is a common thread for all caregivers, or getting late to school because the caregiver has not arrived at the home or there’s a different caregiver coming and now you have to re-teach everything.

So one of the conscious decisions I made with the company was not to have that.  To make sure there’s one caregiver for one family. Because for me, that was the biggest irritation.  I mean, there was multiple times where probably I was in the car crying because my kids were getting late to school and the caregiver still was not there, or they were going to be no-show.

JANA  – Yeah.  That’s such a nightmare.

SHAISTA – So, one of the conscious decisions I made with the company was that I was not going to let a family go through that. You know, I’m really adamant with my caregivers as well, when I sign them on board: now listen, this is not a joke. This is not something where I’m taking this lightly if you’re calling off, or you just don’t tell us where you are.  Because for me, that was the hardest – one of the hardest things through this whole journey of being a caregiver.

JANA – Is your dad still alive?

SHAISTA – No, unfortunately, he passed away in June.

JANA – Oh, I’m so sorry. That’s recent.

SHAISTA – Yeah.

JANA – Well, I’m wondering how you went about finding culturally competent caregivers and how you manage to retain them, because I know you have a high retention rate.

SHAISTA – Yes.  So one of the things that I did, one of the other aspects of the company – and of course, because I went through this using other local senior care companies, I knew what I wanted to do, and what I would not want to do.  And so, one of the things was that aside from going to local mosques and temples, I was able to have women trained through different CNA (Certified Nursing Assistant) schools here. One was through the American Red Cross, one is another great CNA school here, Covenant Academy.

And what I would do is, I’d tell these women, I’ll pay for your CNA course, you’ll have to stay within my company for three years – of course, you’ll get paid – but we’ll pay for your class.  And that’s how I was able to get my first group of ladies.  Because the other thing was that I didn’t want untrained individuals in families’ homes.  Because a lot of these other local senior care companies were sending us people that I’d be like, honestly, you can’t be a caregiver. Because they just had no clue what to do. And I was like, This can’t be, you’re taking care of an elderly person who needs help.

So again, I was lucky again, in the sense of my medical background, my father was a physical therapist so he was able to teach me how to get people in and out of bed. And we were able to teach those aides who were coming to see my mother-in-law those techniques.

But I wanted those women trained. So that was the other social aspect of the company, was that we wanted to train women who were victims of domestic violence – or were coming from lower socio-economic backgrounds, recent refugees –  to train them in these different schools for free, so that they would end up having an economic and financial platform, which eventually, you know, we want them to go on and further their education in whatever they want to do.

But at least this will give them some type of confidence to kind of move forward with their lives, because a lot of times that is what’s lacking, is the confidence. They just are so unsure, can they do it, can they not. And once they do, then they do quite well.  So I piloted the program so that we would have enough women who would be able to work when I started the company, and then because of that we were just able to kind of have enough ladies to offset the demand.

JANA – It’s an interesting business model because you are also helping the families by providing them with continuity of care, which is so hard. It’s like a revolving door and you never know what you’re going to get.

SHAISTA – Yup. Exactly.

JANA – Yeah. So you deliberately price your services below the national average, so families can afford your services. What is the national average? And what sort of rates do you charge?

SHAISTA –  So one of the things was that these senior care companies were charging anywhere between 20 and 25 an hour.  And I was honestly like, how are families going to afford that? That was the other issue that I had, where I was like, we can afford it, my husband’s a physician, making money where he can afford to keep his mom, but it was also hard for us financially because we had young children at the time. And that in itself was a cost of home-running. But we were still, thank God, able to make ends meet and have the care for her.

As for my father, he had his social security, he had his IRA and pension and everything. So he was fine.  He could pay out of pocket.  But I thought of other families who do not have access to that. And not everybody qualifies for Medicaid. So one of the things was that I wanted to make sure that families would be able to afford the care.

So I made a conscious decision of having it at 15 an hour, which was not great for the company, but I knew families – because some families just pay privately some caregivers at 15 an hour, but sometimes those caregivers take off, then they’re not able to come.  And so this way, they would have an agency to backup any type of caregivers you know, not showing up to work etc.

So we charge $15 an hour and again, the national rate is 20 to 25 an hour.  And like I said, not every family can afford and can qualify for Medicaid. So we are a Medicaid provider agency as well.  And then many times, there are some families who can’t even afford the $15 an hour, they don’t qualify for Medicaid. So then we’ll work with families to get the care that they need, which is not again, great. It’s not like the most profitable company, but at least it’s a company that can provide service to the elderly, despite whatever cultural background, you’re from.  So.

JANA – And your caregivers, do they get the free schooling in exchange for that, or do you pay them as well out of that?

SHAISTA – No, I pay for them as well.  And we pay more than minimum wage.  So my profit margin if you can figure it out, is not so great.

JANA – Is not great, no.

SHAISTA  – But I feel like that’s why I’m able to retain my caregivers.

JANA – Sure, sure.

SHAISTA – And it’s all been through that.  It’s just caregivers telling other caregivers, Hey, you should work for this lady, she’ll pay you X amount and yes, we don’t have any benefits, that’s true. But what we do offer, what I tell every family is, you know, quality care at affordable prices. And I don’t think anyone needs to be reprimanded for taking care of their loved one. Everyone deserves some type of respite, everyone deserves to age in place with dignity and respect. And that has always been my motto.

It’s just what I felt like was the right thing to do.  And again, you know, I’m in a position where, sure it’s not going to make me millions, but at least if we can help somebody, when you go to sleep at night, you have a peaceful sleep because you feel like okay, you know, you’re trying to do the best that you can with what you have.

JANA – Right. Michigan has the highest concentration of Muslims in America. Is that correct?

SHAISTA – Arab Americans, but actually, one of the things – what I found out in this whole journey was actually Indian Americans are the highest population of ethnic minorities in Michigan.  Next come the Arab Americans.  We have a huge Bengali community too, which has helped me a lot in recruiting caregivers as well.  And so, you know, the last five years has been just a journey of trying to figure this out.

Because again, I don’t have a business background. You know, I don’t have an MBA. But what I did have was, you know, a father who had a business background, who told me Okay, at least you can do this type of a profit margin, you know, at least we’ll break even or maybe make a dollar. But at least this way you would be able to have family members have the care that they are in need of.

And it is – I call it a silver tsunami of what is happening here. You’re having a huge, large patient population. And as the aging population grows, you’re having less and less caregivers. You know, there’s so many different studies out there, but numbers don’t do anything when nothing is really being done. 

So, one of the other things that I started to do too, is, I was approached by a group called Caring Across Generations, in which we are trying to promote [the] Universal Family Care Act, which would, there would be some benefits to having caregiving under, I’m not sure what type of – if it would be under Medicare or it would be something that the state would provide to family caregivers.

I know that Oregon and Washington State have passed. So there is a stipend that family members will get. And they can’t use that stipend for care.  I do know Hawaii is currently doing the same thing. I think in Maine, unfortunately it wasn’t —

JANA -it didn’t pass. Right. Right.  The Kapuna Caregiver Act in Hawaii is the one that really got put on the map.  I think they get, like, $70 a week, I think it is?

SHAISTA  – Yeah, yeah.

JANA – That’s a really great thing. When you first started the company, you got a lot of inquiries, but also comments like my kids will do this.  What was the reality, though, about these kids?  And I wonder if you could talk about other stigmas that you faced.

SHAISTA – So this was interesting, too.  The families in which the parents – meaning, like, my parents were taking care of their own care – were like, Well, why do we have to pay for this?  Number one.  Or they would try to bargain with you. We’re not going to bargain this down. This is not India.  This is not Pakistan.  “Oh, but you know, I need a deal.”  I’m like, There’s no deal.  There’s no deal happening.

JANA – You’re in America now.

SHAISTA – Yeah, exactly. And then, like, people who were quite well off would want a deal, too.  They would be like, Oh, what if we get one week, or we get another week free. I was like, No, that’s not gonna happen. I’m like, you know, Look at other local companies and see what they’re doing as well. But that was one of the things.

The other thing was that, like – exactly: my children will do it.  Oh, my daughter-in-law will do it.  And that stigma, which was attached to all of this was interesting because my generation –  the first generation [that] was going to have to carry this burden of caregiving for that generation – realized that no, there is a company out there that will help alleviate that stress. And so those children are on board.

So a lot of them are now starting to make decisions for their parents.  As per the reason why the request for caregiving for our company has expanded exponentially, since I started the company. When I first started, yes, I mean, it was just like, Well, why can’t my kids do it? Why can’t we do it?  You know, I’ll help my husband or wife. But when they physically could not do it, that’s when the calls would start to come, Oh, I need help. And again, sometimes what was interesting, is that the Muslim family would want a Hindu caregiver and a Hindu caregiver would want the Muslim caregiver, so that the information or the gossip would not be free-flowing and their families don’t know one another-

JANA  [overlapping] – How interesting.

SHAISTA – so they want to keep things private.  Yes.

JANA – Wow, I would never have thought of that.  It makes sense, though.

SHAISTA – Yes.  So they wanted to keep things private, so their community members wouldn’t know what’s going on in their house. So they wanted things like that. I got requests a lot for that. A lot of requests of, you know, not to talk about it.

The other thing that ended up happening with this immigrant population as well was, especially when it came to Alzheimer’s dementia, they did not want to talk about it. They recognized that there was an issue, but they did not want to define it. And they did not want to give it a name.  Although their doctors had.  But it was a cultural stigma that Oh, no, they have this disease. (A) don’t tell the family member; (b) they really don’t have it, they’re just aging. So to place a name, and to give it some type of reality, was really difficult for that generation.  Not for us. For us, you know, we understand the terms and what have you, and it’s not a big deal.  But for them, it was

JANA – I think that cuts across cultures, though – that difficulty with naming it and admitting and talking about it, in the generation above ours, for sure. But anyway…

SHAISTA – Yes.  No, and that’s what I’m saying. There’s so many common threads, but culturally, caregiving goes across all different cultures and the challenges that we’re all facing pertains to every single person. But with this particular group, yeah, there’s different stigmas, different things attached socially. It’s like, Oh, no, I’m not getting old, I’m fine, I can drive. You know, they’re driving all over the place and you know, they’ve been lost. So there’s been a lot of issues that the community itself is facing.

And I’ve always said this, too, they were able to build their mosque in a, you know, totally different country. They were able to build their temples. They brought their Patil brothers, they had their groceries put in place. One of the things that they did not anticipate was aging in this state.  And I think a lot of it had to do with, Oh, well, we’ll go back to our countries where we came from. We made so much money, we’ll take it back there.

Because even in my mom’s neighborhood, there is a husband and wife, she was an OB-GYN and he was a psychiatrist. And they were going to go back to Delhi and live there six months out of the year. And what happened is her husband ended up getting sick there. And they took an ambulance to the hospital. They were stuck in an hour and a half in traffic.

JANA – Wow.

SHAISTA – And literally when she came back she was, like, I can’t do that to him ever again.  She was lucky.  He was fine.  You know, he had a hospital stay and what have you, but she was like, there were things that they were not anticipating that those things would happen. Even the medical care there was very difficult for them to understand and get used to. So then they ended up coming back to Michigan.

So there was a lot of things that I think that they had this, you know, kind of vision of, I’m going to go back.  And of course with my Arab American clients, a lot of their countries are war-torn, so they cannot go back to settle. So there was a lot of instability and things like that, that they did not kind of-

JANA  -anticipate. Yeah.

SHAISTA  -envision. Yes, exactly. And so with that being said, having to get with the fact that okay, they’re going to age in place here, again, culturally, we’re still not there – putting our parents in nursing home and assisted living. But we do have patients who are in nursing homes.  We have contracts with them where our aides will come in and give them food that’s, you know, culturally similar so that, you know, at least they can have a caregiver who can speak their language sitting with them in the home or the assisted living.

But still, it’s not to that point where they’re going into those assisted living [facilities].  They want to be close to their family, they want to be close to their friends. So, you know, it’s just kind of them trying to figure their way out – again.  So it’s a whole new phase of assimilating, as they’re getting older.

JANA – Wow, this idea that living in America was a temporary thing, that we would be going back – that’s really fascinating.

SHAISTA – Yeah. Yeah, I feel like that was one of the things. And we have a lot of patients who are like that.  And right now I have a client who’s going back to India, it’s a Muslim family.  Her husband already left, and they’ll be back sometime in February, but he has Parkinson’s.  And how long is he going to be able to do that? That’s what his wife was saying. She’s like, I don’t know. 

Before she would let him go alone, but since the last time when he went he came back quite sick, she’s like, Well, I have to go with him now. You know, it’s a challenge for her as well.  And many of them want to age in their homes.  They do not want to leave their home. My father was very adamant that he was going to live and die in that house.  We just decided to, you know, fulfill his wishes. But not every family can do that.

JANA – Yeah.  It’s a difficult set up.  Sure. Is your mom still living?

SHAISTA – Yes. So my mom is still living in that huge house of hers-

JANA  -oh, all on her own.

SHAISTA  -without my dad. Yeah, yep – all alone and so-  Yeah, so now we’re in a new phase.  Yup, in a new phase of what we’re going to do.  I think she’s ready to leave. But that’ll be a whole new challenge for her as well. But my brother and myself are like 10, 15 minutes away, but not everybody has that opportunity as well.

JANA  – That’s kind of scary.

SHAISTA  – I have another family that I just went to meet yesterday. The husband and wife only speak Urdu. Very limited English.

JANA – Urdu?

SHAISTA – Yeah, they only speak Urdu.  And the mom, even though they raised their kids up here, still has a very limited grasp on English. She can read and write it, but she can’t really communicate. And she was in the hospital literally for about three months, and it was a real issue for the family, because the male nurses would come and she didn’t want the male nurses to come. 

And, you know, even when I went to meet them yesterday she said Kehti (?) was very adamant. Please don’t [send] male aides. And I was like, I’m not going to be sending a male aide to you.   But you know, I’ll be sending them somebody who can speak their language while she recovers.

But again, you know, these are challenges that they’re facing. And so when I was talking to them about services, the biggest thing for them – because they didn’t want services, the father was in complete denial, he’s 87 years old, he was like, Oh, I can take care of my wife who’s 81.  I was like, I don’t think so.  But the family was totally on board, like the kids were like, totally on board.

They were just like, we’re going to, you know, get the services for her.  All she was interested in was, Okay, somebody can cook and clean for me and cook my food?  And I was like, Yes. They’ll be able to make your Daals and your curries and things like that. So, she was very happy about that.

So then that just kind of took away the idea that maybe we are taking some of their independence away. But in reality, she’ll be getting somebody who will be helping her in the home. So, you know, as I said, it’s a little difficult with this particular group because they kind of came in here, did everything they wanted to do however they want it to do, raised their children here, and now you’re telling them how to take care of themselves and what to do and what not to do. And you do end up having head butting, but…

JANA – Uh huh. You gave an example in a video I saw of a client who had early onset Alzheimer’s who wasn’t engaging with the caregivers. I wonder if you could share that story. It was so poignant.

SHAISTA – So one of the things – we had two clients who have very early onset Alzheimer’s dementia, and he has written a lot of blogs – it’ll be on our website by the end of next week – where he is documenting the care that he’s received for his wife. But she would not engage with the other caregivers that would come in, but as soon as we had a caregiver who was from a similar background as her, she would at least put on, like, Bollywood songs, Bollywood movies, and her eyes would light up and she would be engaged for quite a few actually hours. It was very soothing for her, you know, her Bollywood songs.

The other thing was that they lose their ability to eat, because if you even place food in front of them then sometimes they don’t want to eat, they don’t know what it’s there for. However, when one of the aides who had taken her tiffin, which was her lunch that she was taking to eat for herself, when she would open it up, it would cue her – the smell – and she was, Oh, I’m hungry.  And she would point to her mouth and say, I want to eat.

So she would, they would, share the tiffin together, and the husband felt like they were very engaged.  She would go on walks with her, and one of the things that we noticed – and again, I had no idea – was that a lot of these immigrants who know English, who could speak English, read and write, when they do end up getting Alzheimer’s dementia, they end up losing their ability to speak English, they go back to their primary language.

JANA – Right. I’ve heard this as well.

SHAISTA – So one of my clients, okay, was from part of India [where] they speak Telugu.  The children spoke Hindi and English. So now the mother spoke only Telugu to them, and they could not understand.

JANA – What is the language she was speaking?

SHAISTA – Telugu?

JANA – Oh.

SHAISTA – Telugu.

JANA – Okay, Telugu.

SHAISTA – And I was able to find a caregiver who could speak Telugu-

JANA  -wow.

SHAISTA – And they were – yep, I was able to find them and place them in the home, and for the last at least, you know, four or five months of her life, she was very engaged with them and she was able to connect with her caregiver and she was able to communicate with her, all her feelings.  And then their caregiver attachment, of course, being from that background, they know how to take care of the elderly, with their cultural values. So.

JANA – Mm-hmm.  I’m wondering, Shaista, have there been some surprises for you along the way?  And, sort of, what didn’t you anticipate?

SHAISTA – I think one of the things that I did not anticipate was… I knew that there was a demand for services. I knew because I was going through the same challenges myself. It took a while. But I knew that it was eventually going to happen. The dynamics within the families – and I’m sure this is, like, cross-cultural – but the family dynamics, and of how important it is to have a strong family bond, so that when you do come to these type of decisions in your parents’ caregiving, having those strong bonds really [makes it] easier to make certain decisions. It won’t be so difficult.

When there is a lot of cultural issues that would be restraining for the kids, and growing up here, and that those kind of manifesting into not knowing your parents and the parents not knowing the child?  You know, that was one of the things.  Because my parents and I, especially my father and I had a very open and honest relationship, and we talked about his end-of-life care. Because toward the end he could no longer communicate, he could no longer talk.  Unfortunately, the disease had taken over his speaking ability. So him and I were able to talk about, you know, his end-of-life care.  It’s so surprising to me that so many families don’t do that.

They don’t talk about what it is that their parents would want.  And then you’re in these highly emotional type of situations, and high-emotion situations, to make these huge decisions for them, but you can’t because you have no idea. So even – and again, that’s probably cross-cultural – but a lot of times I think it’s really surprising. Families not knowing what it is that their loved one would want. And explaining to other family members, advanced directives and things like that.

That’s another thing, too.  They – a lot of people within our culture do not understand hospice, do not understand palliative care, do not understand advanced directives.  They’re like, Oh, you know, you’re giving up. You’re not doing this. I mean, culturally, that’s a whole other topic. But there is a lot of things that I feel like community members, people, are just not anticipating as they’re getting older. And not knowing how to initiate conversations. That was surprising.

JANA – Huh.  I mean, not talking about end-of life-care, I think you’re right – it is cross cultural, but what’s interesting is that in a lot of immigrant families, you think the attachments are so strong that well, why wouldn’t they talk about that too?  But-

SHAISTA  -right.

JANA  -because they talk about everything else. And there’s just, like, such attachment. I mean, not to say that families don’t have internal squabbles and stuff like that, but it just tells you a lot about the stigma of talking about death, I guess.

SHAISTA – And care.  I mean, you know-

JANA  -and care.

SHAISTA  -again, it’s just like, Oh, I’ll pass the baton on to this sibling, or I’ll pass the baton on to this person.  Not having to engage so much, as to what they’re doing in the caregiving situation. You know, that’s always something, too, that we have to deal with. That was surprising – that within a family of like six, seven, there was always the one sibling who would step up to the plate and-

JANA  -yeah, that’s common.

SHAISTA  -kind of make all the decisions.  And I think that’s common.  Patriarchal society, I think one of the other things – my mom was an equal partner with my dad.  Whether that be socially and financially, she was an equal partner with him.  So I kind of grew up in a very different household. But some of these families are very patriarchal, and the father made most of the decisions. So now there is a situation where the wife is ill, and how are you going to get care? It was really difficult for that person to make the decision of having care, and admitting that they needed help. That was another thing.  Because I was like, Well, you needed the help. It’s okay.

JANA – Right. What about when the men need care?  Who makes their decisions?

SHAISTA – I think – that’s something that was interesting, was that the woman would think, Oh, I can do it.  And they couldn’t, and then the children would step in.   It’s like, with the parents – I had a girl, she lives in New York and her parents are here, and all she wanted was somebody to go in like two, three times a week, and make food for the mom.  Because she’s like, my mom has rheumatoid arthritis, it’s hard for her to go up and down the stairs. Can she come in and make this food for us? But the father was dead against it. He’s like, Well, I can just go to the – you know, Indian takeout is cheaper. So, but your daughter was really upset with him, because he was – she was like, How can you do that?  So still, again, that is going to be the challenge.  But as that population is aging, and the children are taking over the care and managing that, then it’s become much easier for me, definitely as an agency owner, to get services for them.

JANA – Uh huh.  Do you anticipate your kids caring for you?

SHAISTA – No, no. [both laugh]

JANA – And how old are they now?

SHAISTA – No, and I always tell my husband, I’m like, No.  Especially after going through this.  Because I feel like – this is the honest to God truth – but, I feel like, I hope, I hope I was there for my kids. I feel like I was pulled in so many multiple directions, I’m not sure.  I’m not sure if they felt neglected at times, which – I’m sure they’ll always have a story or what have you.  But a lot of people tell me, No, your children saw you do for your parents and for your mother-in-law.  They will, because that’s what they have seen  I’m not sure. I hope it doesn’t have, like, a reverse effect on them.

But to be honest with you, my husband and I are, like, No, we’d rather – again just like with [unintelligible], we want to be private, in our home.  So, out of all of this in the last five years, I’ve purchased long-term care insurance, so…

SHAISTA – I was like, I will get old, I anticipate that there will be things that will happen, and I’d rather protect myself just like you do when you purchase life insurance and you protect your family this way, I’ll protect myself so that, you know, if I do need services, I can get services.  But it’s a unique challenge because my parents did not have the responsibility of caring for their loved one when they were old. Because they were here. Their family members did. Yes, the US dollars went there to help them. But physically, they were not there. So they do not know  – they actually don’t know – how it feels to have small children, deal with aging parents on both sides, and work – and where you can allocate that time to each of those different tasks.

JANA – There you go.

SHAISTA – And that’s the one thing our parents, this immigrant group, did not have knowledge of, because they didn’t do it.

JANA – Right.

SHAISTA – You know, their loved ones were in India and Pakistan or, you know, in other Arab countries. And sure, they were able to send the dollars to help their families, you know, and of course, that was not a bad idea either.  But they didn’t bring them over here to do that. Whereas for my husband, he brought his mom over here. And again, that decision – you know, she was very socially isolated for many years.  It was a very difficult time for her.

JANA – Is she from Pakistan as well, or India? Where’s your husband’s family from?

SHAISTA – No, my husband’s family is from Pakistan.  My in-laws, though, migrated from India in their 20s – much later than when my dad did. My mom was born in Karachi, Pakistan. My father was born in India. In 1947, after the partitioning, his family left and they all went to Pakistan. So my father says he was about four or five.  They migrated from India to Pakistan, which is a whole different – that’s another story, too.

JANA – Sure, I’ll bet. Wow.

SHAISTA – So, the story, you know.  Yeah, that’s what I always say – that group lost their homes in India, went to Pakistan, and then also came all the way across here as well.  So they kind of were just roaming, for-

JANA  -migrating.

SHAISTA  -and were without a country – yes, exactly.

JANA – Right. Wow. Well, I wondered if you could tell me what the significance of the name of the company is – Apna Ghar?  Because I was fascinated by that. And for listeners, it’s spelled A-P-N-A-G-H-A-R. But you pronounce it “up-na car” What is the meaning behind that?

SHAISTA – So “Apna” means “mine,” “our,” “your”… in Hindi or Urdu.  So it can mean, ours, mine, yours.  And “Ghar” means “home” in Hindi and Urdu. So it’s like, my home, our home, your home.  And all we’re doing is offering the comforts of your home, from your cultural background, in your home, so you can age in place with dignity and respect.  And bringing all those cultural values to you. So that was the idea. Because no matter what, Apna Ghar would resonate with that particular group, the South Asian community.  And that was the choosing of the name.

JANA – Mm-hmm.  Well, I think it’s terrific, what you’re doing. Do you have any last thoughts that you’d like to share before we close?

SHAISTA – No. I think, you know, again, all of these cultures have a common thread, but caregiving is cross-cultural.  All of us are facing the same issues, and there’s a lot of, you know, lack of resources, especially from the federal and local government. So, I feel like, you know, one of the other parts of the company is to advocate for senior care. And, you know, hopefully this Universal Caregiving Act can pass in the 2020 election, you know, with Caring Across Generations, who is using it as a platform.  And hopefully some of the candidates can get on board with this, because I really think a lot of families are in need of care.

JANA – No question about it.

SHAISTA – There’s a need of understanding the emotional and physical stress of the caregiver, and their families. So, hopefully 2020 offers better results.

JANA – Amen. We’ve been speaking with Shaista Kazmi, Founder and Owner of Apna Ghar, the first senior care company dedicated to serving the needs of elderly South Asian immigrants and their families.  Apna Ghar is based in West Bloomfield, Michigan, but it also serves South Asian immigrant families and other parts of the country. The show notes for this episode will include links to Shaista’s company, but if you want to check it out right now, you can go to the Apna Ghar website – that’s A-P-N-A-G-H-A-R homecare.com.  And you can also call the company directly at 248-325-9028.  Shaista Kazmi, thank you so much for being on the show and for this wonderful work you do serving the needs of South Asian immigrants and their families.

SHAISTA – Thank you so much. Thank you so much for having me.