SCOTT SIMON: Welcome to Need to Know. And thanks for joining us.
This week another chapter in our new series “Prescription America” — exploring new ways to provide better healthcare at better costs. Our focus in this episode — long-term care of the elderly. More than 10 million people in the United States already have long-term health care needs. That number is only going to grow as baby boomers and their parents live longer. But many of them will require extraordinarily expensive full-time care. With budgets tight across the nation, the questions are: who is going to provide that care? And who is going to pay for it? Need to Know’s Karla Murthy recently traveled to California and profiled one family dealing with the financial and emotional stress of caring for a chronically ill loved one.
KARLA MURTHY [narration]: MARY FELDMAN’S STORY WAS FIRST REPORTED TWO YEARS AGO AS PART OF A DOCUMENTARY ABOUT END OF LIFE CARE.
LYNN FELDMAN (in meeting): I really didn’t want to believe that it was— that we were going to get to this stage.
KARLA MURTHY [narration]: SHE’S 94 YEARS OLD, AND IS IN THE VERY ADVANCED STAGES OF ALZHEIMERS. HER SON LYNN AND HIS PARTNER NED – HAVE BEEN TAKING CARE OF HER IN LOS ANGELES FOR ALMOST 10 YEARS.
DR. BRUCE FERRELL: (in meeting) Mary? Glad to see that you are doing well.
KARLA MURTHY [narration]: BACK THEN – THEY DISCUSSED WITH MARY’S DOCTOR WHAT TO DO ONCE HER BODY BEGINS TO SHUT DOWN.
DR. FERRELL: You’ve chosen you don’t wanna feeding tube.
LYNN FELDMAN: No feeding tube. No life support, other than comfort.
KARLA MURTHY [narration]: BUT WHAT BEGAN AS A STORY ABOUT END OF LIFE CARE HAS BECOME A STORY ABOUT LONG TERM CARE.
DR. BRUCE FERRELL: I began to see her probably close to ten years ago. And at that time actually, she was quite functional.
KARLA MURTHY [narration]: DR. BRUCE FERRELL IS A GERITRCIAIAN AND PALLIATIVE CARE EXPERT AT UCLA MEDICAL CENTER. HE’S CARED FOR MARY FELDMAN THROUGHOUT HER GRADUAL DECLINE. TODAY – HER VITAL SYSTEMS ARE STILL STABLE – EVEN AS HER ALZHEIMERS HAS COMPLETELY INCAPACITATED HER.
DR. BRUCE FERRELL: Most cases of patients with– that are like her, they eventually succumb to either pneumonia or infections. They really don’t die of Alzheimer’s disease. They die of the complications thereof.
KARLA MURTHY: So this could happen though in a year, two years, another ten years.
DR. BRUCE FERRELL: Yes. Unfortunately, it’s very difficult to predict.
KARLA MURTHY [narration]: MARY HAS BEEN UNABLE TO DO ANYTHING FOR HERSELF FOR THE LAST THREE YEARS. AND SO LYNN AND NED – BOTH IN THEIR 60’S – ARE LEFT TO CARE FOR HER DAY AFTER DAY, YEAR AFTER YEAR.
LYNN FELDMAN: I didn’t realize the– the devastation that this disease– does to– to– to a person. This isn’t the person that I know as my mom. So all I can do is love the person she is right now. But it breaks my heart because– because it just isn’t– the person I remember as my mom.
KARLA MURTHY [narration]: ABOUT 70% OF PEOPLE OVER THE AGE OF 65 WILL NEED LONG-TERM CARE – HELP WITH DAILY ACTIVITIES LIKE EATING OR BATHING. AND WHETHER WE WANT IT TO OR NOT – THE BURDEN OF THAT CARE OFTEN FALLS ON THE FAMILY.
LYNN IS THE ONLY SIBLING LEFT IN HIS FAMILY TO TAKE CARE OF MOM. SO IN 2003 – LYNN MOVED HER IN WITH HIM AND NED – HIS PARTNER OF 23 YEARS.
NED FELDMAN: When I was a kid– my mom and dad took in all sick, old people. You know what I mean? So that’s the way I was brought up, so I didn’t think it was a big deal to take care of mom.
KARLA MURTHY [narration]: MARY’S CARE HAS FALLEN PRIMARILY ON NED. HE USED TO BE A POWER ENGINEER BUT HAS BEEN ON DISABILITY SINCE THE MID 90’S. LYNN IS STILL WORKING. HE’S A SUPERVISOR AT A HOSPITAL AND TEACHES LAW CLASSES.
LYNN FELDMAN: It’s a lot to ask Ned to take on. But—but he’s– an amazing– care giver for Mom. And so, I’m very– I am just– Mom and I are very blessed.
KARLA MURTHY [narration]: NED SAYS – HE CHERISHES THE TIME HE’S BEEN ABLE TO SPEND WITH MARY – ESPECIALLY BEFORE HER ALZHERIMERS HAD ADVANCED. HIS OWN FATHER REJECTED HIM BECAUSE HE WAS GAY – AND BOTH OF HIS PARENTS DIED BEFORE HE FINISHED HIGH SCHOOL.
NED FELDMAN (in kitchen): So when mom came along – she just treated me wonderful. And so to me this is not a burden to me.
KARLA MURTHY [narration]: HE SAYS MARY WAS LIKE ANOTHER MOM TO HIM.
NED FELDMAN: She reached over and– and took my hand and looked in my face and blinked her eyes and me and says, “I love you more than you ever know.” People look at her in that bed and they just see, you know, a deteriorating body. But Lynn’s mom has brightened my life up so much.
KARLA MURTHY [narration]: OVER THE YEARS – DR. FERRELL HAS HAD MANY DISCUSSIONS WITH HER FAMILY ABOUT HOW BEST TO MANAGE MARY’S ONGOING CARE.
DR. BRUCE FERRELL: I felt very comfortable and I still feel comfortable that they– really have her best interests at heart.
KARLA MURTHY [narration]: HE SAYS CASES LIKE MARY FELDMAN ARE PART OF A LARGER TREND HE’S BEEN SEEING OVER THE LAST 25 YEARS.
DR. BRUCE FERRELL: Our patients are living longer, due to the miracles of modern medicine. Great antibiotics, great blood pressure medicines, but they seem to be living longer with more disabilities and more– need more help in just getting by on a day-to-day basis.
KARLA MURTHY [narration]: DR. FERRELL SAYS – THIS AGING POPULATION IS GOING TO NEED MORE LONG TERM CARE THAN EVER – BUT THAT CARE IS GOING TO COME WITH A HUGE COST THAT MOST AREN’T ABLE TO PAY.
DR. BRUCE FERRELL: It’s one of the most common causes of loss of wealth for our– our families and our children.
KARLA MURTHY [narration]: THE GOVERNMENT ESTIMATES THAT SOMEONE OVER 65 WILL NEED AN AVERAGE OF 3 YEARS OF LONG TERM CARE. TO GET THAT CARE IN A NURSING HOME COSTS AN AVERAGE OF $72,000 A YEAR. THAT’S $216,000 IN LONG TERM CARE COSTS.
POLLS SHOW THAT MOST PEOPLE ASSUME MEDICARE WILL PAY FOR THOSE COSTS. BUT THAT’S NOT THE CASE. MEDICARE ONLY PAYS FOR UP TO 100 DAYS OF SKILLED NURSING FACILITY CARE. IT DOES NOT PAY FOR MOST LONG TERM CARE NEEDS – KNOWN AS “CUSTODIAL CARE” – HELP WITH DAILY ACTIVITIES LIKE “DRESSING, BATHING OR USING THE BATHROOM.”
BUT THE FELDMANS HAVE ACTUALLY MANAGED TO AVOID GETTING HIT HARD FINANCIALLY. THE MAIN REASON IS BECAUSE NED TAKES CARE OF MARY.
LYNN FELDMAN: We couldn’t afford around the clock care that she would need. So you figure what Ned has done for Mom has really, you know, saved us from bankruptcy really.
KARLA MURTHY [narration]: MARY ALSO HAD ABOUT $100,000 DOLLARS IN SAVINGS THAT HAS BEEN PUT TOWARD HER CARE. ALL OF THAT MONEY HAS NOW BEEN SPENT OVER THE LAST 10 YEARS….USED TO PAY THINGS LIKE FOOD AND HER HOSPITAL BED.
LYNN FELDMAN: It– it went a little further because we were able to keep her at home. Were we to have put her in a nursing home, it would have been gone in, you know, probably in two or three years.
KARLA MURTHY [narration]: BUT DR. FERRELL SAYS, EVEN IF YOU ARE ABLE TO CARE FOR YOUR LOVED ONE AT HOME, BEING A FULL TIME CARE GIVER IS NOT AN EASY JOB.
DR. BRUCE FERRELL: It is a lot of labor– to take care of a person like that, to keep them clean, keep them fed, keep them hydrated. It’s so labor intensive that– not all families can do this.
KARLA MURTHY [narration]: CARING FOR MARY HAS BECOME A PHYSICALLY DEMANDING AND LOGISTICAL CHORE. TO HELP NED GET MARY TO HER 6 WEEK APPOINTMENT WITH DR. FERRELL – LYNN HAD TO TAKE THE ENTIRE DAY OFF FROM WORK. AND HE HAD TO RENT A SPECIAL VAN FROM ACROSS TOWN THAT IS WHEEL CHAIR ACCESSIBLE.
KARLA MURTHY: Was there ever a turning point or a moment that you realized you needed to get more help?
LYNN FELDMAN: Yes. Probably two years now. It just got to the point where one person couldn’t do it. And it wasn’t right for Mom either because she needed– you know, she needed to be turned– every couple of hours. And so, that’s when we started looking– to see if we get some help.
KARLA MURTHY [narration]: DR. FERRELL REFERRED THEM TO A STATE RUN PROGRAM CALLED IN HOME SUPPORTIVE SERVICES – WHICH ASSISTS THOSE WITHOUT MEANS.
TWO HOME HEALTH AIDS NOW COME TO THE HOUSE TO HELP WITH MARY’S CARE. MARY QUALIFIED FOR CALIFORNIA’S MEDICAID PROGRAM – SO THE STATE PAYS FOR AN AVERAGE OF 45 HOURS A WEEK OF IN HOME CARE.
BUT IT TURNS OUT – THE AIDES ALSO BRING SOME BENEFIT TO NED PERSONALLY AS WELL.
LYNN FELDMAN: I think it has been good for Ned to, to have someone come in– to help. Because now, he has– some other companionship besides just me and besides Mom.
NED FELDMAN: I was isolated. And I mean very, very lonely. And I never left the house. And I was getting bitter anger with– Len ’cause he’d go to work and he’d get to talk to people. I think people who– are taking care of loved ones at home– they forget to take care of themselves and love themselves.
KARLA MURTHY [narration]: DR. FERRELL SAYS – THAT’S A COMMON PROBLEM THAT CAREGIVERS HAVE.
DR. BRUCE FERRELL: It works best when there’s a large enough family that they can take turns and give each other a break. It seems to be very difficult for a spouse alone to take care of one person. And we know that the stress of care giving– has– major ramifications for individuals. They’re more likely to get sick. They’re more likely to have a heart attack. And they need– they need help. They need respite. They need their own time
KARLA MURTHY [narration]: ALTHOUGH IT’S A PAINFUL EXPERIENCE FOR MANY FAMILIES HE’S SEEN, DR. FERRELL SAYS – IT’S ALSO A TIME OF PERSONAL GROWTH. AND THAT’S BEEN TRUE FOR LYNN AND HIS PARTNER NED.
NED FELDMAN: I tried two other relationships. And it didn’t work. And the reason why it didn’t work because we weren’t on the same page. We were not working together. And when you’re in this type of situation you’ve got to work together in taking care of a loved one. She came and cemented us as a family.
KARLA MURTHY [narration]: THIS EXPERIENCE HAS ALSO MADE LYNN AND NED THINK ABOUT THEIR OWN FUTURE AS WELL. THEY DECIDED TO BUY SOME LONG TERM CARE INSURANCE – WHICH COSTS ABOUT $7000 A YEAR FOR BOTH OF THEM.
LYNN FELDMAN: Even though it was expensive because we’re purchasing it now in our 60s– at least it gives us– a little bit of comfort.
KARLA MURTHY: And that was something you had never even thought—
LYNN FELDMAN: Never even given it a thought.
KARLA MURTHY [narration]: BUT LONG TERM CARE INSURANCE MAY NOT BE THE ANSWER FOR EVERYONE. COSTS HAVE SOARED IN THE LAST FEW YEARS. PLUS, IT USUALLY COVERS JUST 2 OR 3 YEARS OF CARE – NOT SUFFICIENT FOR PATIENTS LIKE MARY FELDMAN WHO HAS NEEDED ALMOST 10 YEARS OF CARE.
DR. BRUCE FERRELL: And I– all I can tell ya is it’s never enough. It’s just– is never enough.
KARLA MURTHY: What about for yourself? I mean, you might need long-term care in the future? Have you made any preparations for that?
DR. BRUCE FERRELL: Well, I’ll be honest. I’m like a lot of people. I’m in denial that I’ll ever need something’ like that. But I know that I will. You know, I think most of us would all wish, when it came our time, that we go to sleep at night and we don’t wake up. And we didn’t burden anybody. And our life is finished. And the truth is, is that for the overwhelming majority of us, we will spend a substantial period of time severely disabled, dependent on others, and utilizing a lot of healthcare during our time of decline
SCOTT SIMON: For more on this, we’re joined by Robyn Stone. Dr. Stone served in the Clinton White House as Deputy Assistant Secretary for Disability, Aging and Long-Term Care Policy. She is now the Executive Director of the Leading Age Center for Applied Research.
INTERVIEW WITH ROBYN STONE
SCOTT SIMON [narration]: THIS WEEK ONLINE…TAKE PART IN OUR WEEKLY POLL. THE TOPIC: LONG-TERM CARE IN AMERICA. LET US KNOW WHAT YOU THINK AND WHY. VISIT PBS.ORG/NEED TO KNOW.
SCOTT SIMON: As you’ve heard, long-term care is expensive. Many of our seniors end up in nursing homes – which is often a big bill for states to foot. But the small state of Rhode Island may have found an innovative way to save money while providing better care with better results. They’re paying loved ones – like family members or even friends – to stay at home and take care of the elderly. Hannah Yi reports from Providence.
HANNAH YI [narration]: SYLVIA MYROW TURNS 91 YEARS OLD THIS MONTH BUT SHE’S STILL SHARP AS A TACK. SHE OFTEN SPENDS HER DAYS AT HOME PLAYING SOLITAIRE…TRYING TO BREAK A NEW RECORD EACH ROUND.
SYLVIA’S IN GOOD HEALTH TODAY, BUT OVER THE YEARS SHE’S BEEN READMITTED TO THE HOSPITAL SEVERAL TIMES…TWICE FOR HEART FAILURE AND ONCE FOR PNEUMONIA…AND SHE’S ALSO HAD A COUPLE FALLS.
SO SYLVIA FINALLY HAD TO MAKE A DECISION – WHETHER TO GET A FULL TIME CAREGIVER OR GO INTO A NURSING HOME.
SYLVIA MYROW: I’ve talked to people that have been in homes and nobody’s been happy. Nobody.
HANNAH YI [narration]: SHE DECIDED ON A LIVE-IN CAREGIVER – THIS MAN.
LOUIS MYROW: I do all the cooking, the cleaning, take her to all her doctor’s appointments. I do all the shopping– washing the clothes, all the above. Pretty much, you know, a full-time caregiver.
HANNAH YI [narration]: ONLY THERE’S A BIG TWIST – HE’S NOT BEING PAID BY SYLVIA. HE’S BEING PAID BY THE STATE. AND HE’S NOT EVEN A PROFESSIONAL CAREGIVER – HE’S HER SON.
LOUIS MYROW: Basically, as an only child, you know, my dad had told me when, you know– it came down to it, that I was here to take care of my mom. And I took that very seriously.
HANNAH YI [narration]: SO SYLVIA HAS BEEN LIVING WITH LOUIS AND THE STATE OF RHODE ISLAND HAS BEEN PAYING HIM ABOUT THIRTEEN HUNDRED DOLLARS A MONTH. IT’S PART OF A NEW STATE PROGRAM CALLED RITE AT HOME – WHICH AIMS TO REDUCE HIGH HEALTH CARE COSTS BY COMPENSATING LOVED ONES TO CARE FOR THEIR ELDERLY.
ELENA NICOLELLA: From a fiscal perspective, we really needed to get a handle on the long-term care costs.
HANNAH YI [narration]: ELENA NICOLELLA IS THE MEDICAID DIRECTOR OF RHODE ISLAND. SHE SAYS AVOIDING EXPENSIVE HEALTH CARE IS DIFFICULT BECAUSE HER STATE HAS THE HIGHEST PER CAPITA OF ELDERLY WHO – LIKE SYLVIA – NEED LONG TERM CARE. AND MOST SENIOR CITIZENS END UP IN NURSING HOMES, NICOLELLA SAYS BECAUSE THERE AREN’T MANY OTHER OPTIONS.
ELENA NICOLELLA: We found that we had a lot of people in nursing homes who probably didn’t need to be there. That their functional needs really weren’t at the level at which you would expect someone to need 24-hour access to– to nurses.
HANNAH YI [narration]: LAST YEAR RHODE ISLAND PICKED UP THE TAB FOR A BILL OF OVER THREE HUNDRED MILLION DOLLARS…ALL SPENT ON NURSING HOMES. THAT’S BECAUSE IT COSTS THE STATE AN ESTIMATED ONE HUNDRED AND SIXTY FIVE DOLLARS PER DAY FOR A NURSING HOME BED. BUT NOW WITH THE RITE AT HOME PROGRAM, PAYING AND SUPPORTING CAREGIVERS LIKE LOUIS COSTS LESS THAN HALF OF THAT. LAST YEAR THIS EXPERIMENT SAVED A MODEST ONE POINT FIVE MILLION DOLLARS.
THE STATE SAYS THERE ARE PLANS TO EXPAND THE PROGRAM AND IN TURN SAVE MANY MORE MILLIONS OF DOLLARS.
BRIAN MCKAIG IS THE STATE DIRECTOR AT CAREGIVER HOMES, WHICH RUNS RITE AT HOME IN RHODE ISLAND. THE PROGRAM ALLOWS THE ELDERLY PERSON TO CHOOSE THE CAREGIVER AND SO FAR AROUND ONE HUNDRED AND FIFTEEN OF THEM HAVE BEEN ENROLLED. A MAJORITY OF THE CAREGIVERS ARE FAMILY MEMBERS, BUT MCKAIG SAYS A FEW ARE CLOSE FRIENDS OR NEIGHBORS.
BRIAN MCKAIG: They have somebody they can rely on. They have somebody that they can cry on when they have difficulties. And the two of them really forge a relationship that faces healthcare crises, which can be scary.
HANNAH YI [narration]: IT’S A FULL TIME GIG THAT KEEPS LOUIS TOO BUSY TO HAVE ANOTHER JOB. SO INSTEAD OF RECEIVING UNEMPLOYMENT BENEFITS – HE’S BEING PAID BY THE STATE TO LOOK AFTER HIS MOM…WITH SOME HELP.
A TEAM OF NURSES AND SOCIAL WORKERS ARE ON HAND TO CHECK IN ON LOUIS AND SYLVIA. LOUIS IS ALSO REQUIRED TO WRITE A DAILY NOTE UPDATING THE TEAM BACK AT THE OFFICE.
BRIAN KCKAIG: We’re working with folks in the community who don’t have medical experience. They’re not your certified nursing assistants. They haven’t gone to school for it. And so, they need the support of a professional staff to be a sounding board when times become stressful. When folks get sick they have a number that they can reach out to and call and find that support and find answers to their questions instead of going to the– emergency room.
HANNAH YI [narration]: SYLVIA HAS NOT ONCE BEEN READMITTED TO THE HOSPITAL SINCE LOUIS BECAME HER CAREGIVER TWO YEARS AGO. MCKAIG SAYS THAT’S EVIDENCE THAT THE PROGRAM – WHEN COMPARED TO NURSING HOMES – IS NOT ONLY SAVING MONEY BUT ALSO CREATING BETTER HEALTH OUTCOMES.
BRIAN MCKAIG: It’s because we have a family caregiver who understands the person’s routine. It’s one-on-one. It’s not staffing one to eight or one to ten.
THAT ONE-ON-ONE CARE FROM LOUIS AND THE COMFORTS OF HOME ARE WHAT SYLVIA SAYS SHE FEELS BLESSED TO HAVE SO LATE IN HER LIFE.
SYLVIA MYROW: I’m an old lady and my whole family passed away brothers and sisters, mother and father, husband. So do I have to go any further to tell you how it is to have him? Taking care of me? Yes, I’m thankful.
SCOTT SIMON: Maria Hinojosa will be with you next week. I’m Scott Simon. Thanks for joining us.