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The Call-In: Elder Care


This is the Call-In. Today we're talking about elder care. America's population is aging. By 2050, there are expected to be over 83 million people age 65 and over. That's double what there was in 2012. Elder care is a big business now. And it's only expected to grow. We asked you to call in and share your thoughts.

MARY CARLSON: Hi, my name is Mary Carlson (ph).

SUE ROSENBURG: Sue Rosenburg (ph).

UNIDENTIFIED MAN #1: I'm calling from Tucson, Ariz.

UNIDENTIFIED WOMAN #1: I'm responding to the question about elder care. It's a really hard one for me to juggle.

CARLSON: I originally had moved in with my grandma when she was 93.

UNIDENTIFIED WOMAN #2: I recently lost my father at the age of 100. He lived the last 50 plus years in our family home.

UNIDENTIFIED MAN #1: My mother is 98 years old. She lives an independent-living facility at this point in time. But I do a lot to help her, as I did for my dad before he passed away.


UNIDENTIFIED WOMAN #2: Thank you so much.

UNIDENTIFIED WOMAN #4: Thank you. Bye-bye.

GARCIA-NAVARRO: Nelda Mays called us. She lives in Atlanta. And she's taking care of her aging father while working full-time and being a wife and mother. And it's hard.

NELDA MAYS: My dad is 87. He just had his third stroke. He was, immediately after the stroke, unable to move on his right side and could not speak. He went to a rehabilitation center for about a month. And he learned to walk with a walker and worked with a speech therapist and can talk. He is now at home. He has 24/7 care. He is not cognitively there, totally. So now I manage his care.

GARCIA-NAVARRO: How did you make the decision to keep your dad at home? And who did you make the decision with?

MAYS: I didn't make the decision with anybody because it's what my dad wanted.

GARCIA-NAVARRO: How many siblings do you have and have they been able to help?

MAYS: I have three. I have two sisters and a brother. My sister that lives in Nevada has been fantastic. She set up all his bills to be paid online. And she monitors his credit cards and that kind of thing. My other two siblings have not participated.

GARCIA-NAVARRO: Is that a source of tension?

MAYS: Yes.

GARCIA-NAVARRO: And you've got 24/7 care. Why did you choose that?

MAYS: Because I couldn't be there 24 hours a day. You know, I run a business. And I have a son. And we - we're very, very lucky that my father had put in place long-term care insurance. And it has not kicked in yet, but he has been approved. That will help some of it. And then my father has put in place some monies. And I have figured out my mind that we can do this.

GARCIA-NAVARRO: Sounds expensive, though.

MAYS: Oh, it's outrageously expensive. But so is a retirement community. And he couldn't do a retirement community at this point. It would be assisted living, and they're expensive.

GARCIA-NAVARRO: What's your advice to others making these kinds of decisions for their parents?

MAYS: You know, at this point, my advice would be sort of like with a newborn - rest when they rest because there's no rest. You know, yesterday was a perfect example. I thought I had a full day of work. And he called me - you know, his caregiver called me and said that his blood pressure was high. I called the doctor. And the doctor said bring him in. So my whole day was done. So get in what you can. You know, rest when you can. It's exhausting.

GARCIA-NAVARRO: What would you want in place for yourself now that you've gone through this? You must have thought about it.

MAYS: I have - my husband and I have talked about, you know, getting long-term care insurance. I have one child. And this - I just wouldn't want to do this to him. I say to him a lot - in a joking way because I don't want to freak him out - but I say to him a lot, you know, gosh, if it was me, I would want to be around people I know that are my age.

And, you know, with those retirement communities, they take you to the movies and to the grocery store. I'd like to go there tomorrow. And, you know, I say things like that to him so that when my time comes, he'll feel OK because he'll think, well, this is what mom wanted because I don't know that I would want this for him.

GARCIA-NAVARRO: Nelda Mays lives in Atlanta. Thank you so very much for talking with us.

MAYS: Thank you.

GARCIA-NAVARRO: Nan Toby Tyrell called in to tell us about why she is reluctant to start thinking about elder care for herself, even though she knows she has to.

NAN TOBY TYRELL: I'm 76 years young. I moved to Port Townsend in 1991 from Vermont. I am a creative arts teacher. I've always spent my life working with kids in a classroom.

GARCIA-NAVARRO: What options have you considered about your own elder care?

TYRELL: Well, one option is a fantasy. But my son lives in Denver. And I had this fantasy that I would go back to Denver and live near him, not in his house, even though he has a separate little entrance there, but live near my grandson who's 12 and be within, like, walking distance. So I would be part of that. It's a difficult choice for me to think about getting older and needing other people to help me.

GARCIA-NAVARRO: You play the piano for residents of a nursing home, am I right?

TYRELL: I play for people who have dementia and Alzheimer's, regularly, once a month. And I play at a retirement home.

GARCIA-NAVARRO: And how has that made you think about nursing homes since you are in them more often than most people?

TYRELL: It makes me not want to be in a nursing home.


TYRELL: I had - I accidentally broke my hip two years ago or maybe three years ago. And I'm a very active person. I'm in good shape. And I had to be in this place for 13 days. And my son was far away in New York. And it was the only choice. They wouldn't let me go home from the hospital. And that experience traumatized me.

They came in my room four times a night. There's no locks on the door. The food was horrible. I lost 10 pounds. It's like I'm giving over my life to other people to make decisions for me when I want to make decisions for my life. It just, to me, feels like jail.

You know, I have like two major things. I have little vision in my right eye, but my left eye is good. I'm intelligent and I - I don't know how to thank you. I just want to thrive here.

GARCIA-NAVARRO: Have you talked about it with your son?

TYRELL: I've tried to breach the subject a few times. And when I go to Denver, when he comes here, we kind of skirt around the issue. And I tell him, you know, wouldn't it be nice if I could come and either rent or buy a condominium? And that's about as far as we get. He's very busy. And I don't - he just doesn't go there with me. Maybe I have to try harder.

GARCIA-NAVARRO: Nan Toby Tyrell of Port Townsend, Wash., thank you very much.

TYRELL: Thank you, Lulu. Take care.

GARCIA-NAVARRO: There are a variety of options for those needing help as they age. Home health, as we heard from Nelda Mays, allows people to come into your home and care for you there. Then there's independent living, as in a retirement community, assisted Living, which may allow you to have your own apartment but in a facility with medical care, and nursing homes for people who are no longer independent.

Brian Lee is a former Florida state nursing-home ombudsman. And he's now the executive director of Families For Better Care in Texas. We asked Lee what people should know when they start looking into the different care options.

BRIAN LEE: The most important things that they should know is that all of these different care options have different state laws, rules, regulations, and federal laws that oversee them. It's really good to be aware of what those are. Nursing homes - there are federal laws and regulations that protect residents, and there are residents' rights. The nursing homes have the most protections. And the nursing homes are being inspected on a very frequent basis.

But once, you get down into assisted living and once you get into the independent living and home health, the laws and regulations and protections are going to be very different because there are no federal laws or regulations.

So what you find in Florida to what you find in Colorado and Alaska and everywhere in between is going to be different as far as what the oversight is like and what, again, residents' rights and protections are there in those assisted living and independent living.

GARCIA-NAVARRO: So if I was looking at these options in the market, what should I look for?

LEE: The number one thing I usually like to tell people is that every state, some place, there's going to be a state repository of inspection information. And there's a federal website for nursing homes. But when it comes to ALFs and those other facilities, they'll have, hopefully, some information out there on a state website. I would look to find those websites and learn as much as possible about those laws and regulations and to just do a deep dive into these inspection reports. And look at those, get a feel for what problems are out there.

The second thing that I would look for is the ombudsman office. Look to them because the ombudsman are visiting facilities and talking to residents and talking to families probably more than anyone else.

The third thing I would do is that I want to schedule some time to go to that place and see what the life is like, what the care is like personally. And let them give you a tour, walk you around the facility. And while you're doing that, this is when folks really need to pay attention to not only what the administrator is saying in the sales pitch, but also to kind of glean what's happening.

As you're walking through, you want to use your senses. You want to hear how staff are talking to residents. You're also looking to smell around the facility. If you walk into the building, the doors open up and then you're bowled over by the smell of urine and feces, which that's happened to me many times, that's probably not going to be the place where you want to put your loved one because that could mean an underlying problem of staff responsiveness to help residents if they've dedicated themselves or had urinary tract infections.

There's going to be times where there are messes and you may smell that and see that when you're walking through, but it should not be a pervasive smell. So using those senses and then sit down for a meal. Talk with the residents. Listen to what they have to tell you.

GARCIA-NAVARRO: When I'm sitting down with the residents, is there something that I should be looking for when I'm looking at them?

LEE: Yes. You want to look at the residents and see if they're clean and they don't look disheveled. Something as simple as just looking to see if a resident has a shirt that's buttoned up and the buttons match - the button holes match - that there's no food that's encrusted on the resident's face or that they've been cleaned and their hair is well-kept and their nails are trimmed.

That says a lot, again, about the staffing, whether or not the staff is there to care for the residents, get them out of bed, get them to the bathroom, get them to take a shower, bath, keep them clean. You know, if this was your grandmother that's in a nursing home, she should look presentable.

GARCIA-NAVARRO: When you're looking at your own care in the future, may I ask what you've - what plans you're making and what you've thought about for yourself?

LEE: Wow. You know what? You're the first person that's ever asked me that (laughter) because, you know, we're - not only am I advocating for the elderly for today, but I'm advocating for myself, really, tomorrow and for my family. I think if I was thinking about options for myself, I would definitely look first at home health because I really love home. And I've been to a lot of facilities, and I don't think that, you know, we're there really as a nation yet to care where I want to see this.

You know, we're still having discussions about people who have been neglected to death because we don't have a power generator in a nursing home to power an HVAC system. You would think something as no-brainer as that, we'd have this figured out and it'd be in place. And we still don't have that figured out. So we still have a lot of work to do to make care better.

GARCIA-NAVARRO: Brian Lee was the Florida state nursing home ombudsman from 2003 to 2011 and is now executive director of Families For Better Care in Texas. Thank you very much.

LEE: Thank you.

GARCIA-NAVARRO: Next week on the Call-In, the business of sports - I mean, kids' sports. It's a $15 billion industry. Are you a parent who is spending money on registration fees, travel, camps and equipment? Are you spending time and emotional energy? How are you making it work and is it worth it?

Call in at 202-216-9217 with your experiences or stories. Be sure to include your full name, your contact info, where you're from. And we may use them on the air. That number again, 202-216-9217

(SOUNDBITE OF CORDUROI'S "MY DEAR") Transcript provided by NPR, Copyright NPR.

Lulu Garcia-Navarro is the host of Weekend Edition Sunday and one of the hosts of NPR's morning news podcast Up First. She is infamous in the IT department of NPR for losing laptops to bullets, hurricanes, and bomb blasts.