Need to Know, March 8, 2013: The long-term care challenge


(This episode was originally broadcast on January 4, 2013)

This week's host, Scott Simon. Photo: Will O’Leary

On this week’s Need to Know, Karla Murthy reports from California about one family dealing with the emotional and financial stresses of caring for a chronically ill parent.

Anchor Scott Simon interviews Robyn Stone, former Deputy Assistant Secretary for Disability, Aging & Long-Term Care Policy under President Clinton, about the broader societal impacts of long-term care in the United States.

Hannah Yi reports from Rhode Island on an innovative program that is paying family members, friends and neighbors to care for their loved ones.

More from Need to Know’s Prescription America series.

Read the transcript.

What’s on this week:

Caring for the chronically ill

Karla Murthy reports from California about one family dealing with the emotional and financial stresses of caring for a chronically ill parent.

Interview: Robyn Stone

Anchor Scott Simon interviews Robyn Stone, former Deputy Assistant Secretary for Disability, Aging & Long-Term Care Policy under President Clinton, about the broader societal impacts of long-term care in the United States.

Report from Rhode Island

Hannah Yi reports from Rhode Island on an innovative program that is paying family members, friends and neighbors to care for their loved ones.

Money & Medicine

This hour-long documentary investigates the dangers the nation faces from runaway health care spending, as well as the dangers patients face from over-diagnosis and over-treatment.

Watch more full episodes of Need to Know.

 

Comments

  • Caregiver

    We caregivers do what is right and necessary for our loved ones, often at the sacrifice of our lifestyles and the length of our lives. Our families suffer as well. Especially our young children, saddled with the lingering loss of their parent well before an appropriate time. We desire emotional, physical, and (yes) financial aid allowing us to get through a most difficult experience without transforming our ill loved one or ourselves into a Fantine. We all know the unavoidable rapids ahead.

    What to do? We hope and pray for some end that allows our ill loved one a dignified death and, for us, a reasonable hope for the future. With courage we carry on. For far too long, some look on a caregiving situation with remote sympathy, but no support. All to often, others dismiss the situation, wrongfully believing that insurance or the government will pay the way.

    Let us, instead, find affordable ways and means to help the caregiver and to aid the one receiving care. The Rhode Island method may be one of many solutions. Regardless, in our magnificent society, destitution should not be the sentence for being ill or being the ill person’s caregiver.

    Help us!

  • Lund

    Thanks for the comments of Robyn Stone. Long Term Care Insurance probably should not be offered for sale as it generally cannot be offered at a high enough price to make it actuarially sound.

    For individuals who qualify, the VA has very good benefits in both home care and day care. If you qualify it is worth pursuing.

  • Terri

    I think it’s a question of personal health. Americans need to put value in nutrition and exercise, which will keep health care cost down. More salads and less fast food.

  • norman

    I’m now 90 and have lived in a retirement apartment for 7 years in the independent living wing of the facility. When I can no longer be independent, I can move into the assisted living and/or the skilled nursing wing of the facility. There is also a :”memory” section of this wing. In both places the staff will take care of all of my needs. This is quite common in the Denver and most metropolitan areas I’ve found. Denver area has over a dozen places like this. Expensive, yes but so is any long term care and it spares the elder’s relatives the monumental task of care.

  • Marcia Waters

    I think with the high cost of medical care it is insane not to allow people to sign a directive, much like a Do not Resusitate directive, that requests end of life euthanasia under patient guidelines. For example, if I get to the point where I can’t eat by myself, turn over, or need someone to change my diapers, believe me, I’d like to be euthanized and I’m not sure why that’s not an option in a free country. I agree there should be guidelines, people should have the right to change their mind, but why force people to live in inhuman conditions with no hope of getting better. What is the point? I am currently 67, relatively healthy and still working. When the day comes that my quality of life is so limited by incurable disease I would like the opportunity to go peacefully.

  • Koreen

    I agree 100%. I would like to sign something right now while I am in my right mind that I would like assistance to leave this life with dignity. I do not want to live dependent on someone to take care of me. I would take my own life before I allow that to happen! I have lived my life the way I wanted and I should be able to end it when I want. It would be helpful to have a place to go for assistance. We have birthing centers, why not dying centers. It will come to this eventually. I just hope it comes before I need it! How can we get this out in the media for more discussion?

  • Blues Ma

    This country needs to face the fact that permitting people with no quality of life left, to pull the pin – legally. Knowing that a humane escape is available would be a great comfort . Also, paying a friend or relative to provide home care is a viable alternative to the nursing home scenario. However, no state is going to willingly agree to pay in that way.

  • Anonymous Caregiver In VA

    I’m in your boat & as of May of this year will have spent 10 years caregiving sick parents (the last 8 caring for a father with Alzheimers who is otherwise healthy but isn’t demented enough for an Alzheimers specific care facility) while others who don’t have to caregive were working to pay for their daily expenses & their retirements & have families of their own i.e. to have their more ‘normal’ lives.

    I don’t really care who gives the help to caregivers just so long as it arrives.Otherwise I hope there’s a little bit of money from my family left after Dad is gone that I can keep because trying to restart a career with a decade or more gap in my employment history is going to be a problem given how our business climate currently operates. If I’m lucky I’ll be able to return to work before I’m 50. But right now from age 33-43 I didn’t work because I did the ‘right thing’ by my family.

    For the naysayers out there just wait till either 1) it’s you who is disabled (and these days the disability can go on for **DECADES** or 2) you are responsible for the care of someone with a disability. (and you are in for a **DECADES** long committment to the caregiving).

    By the way there’s a statistic out there that says in 75% of cases, what keeps a family member in care at home and not in some ‘facility’ is the presence of a daughter. As if we women didn’t take on enough caring for other family members. If you are lucky enough to have a daughter or daughter in law, count your blessings and do all you can treat her well now.

  • Leslie Downey

    A huge downside of “aging in place”, covered briefly in this segment, is that it contributes to global warming. When elderly people live alone in the multi-bedroom houses in which they raised their families, they are heating and cooling much more space than they occupy. The energy required to heat or cool the unneeded rooms (like extra bedrooms) produces greenhouse gases that warm the atmosphere. Also, because these large, older houses are not on the market, they are less affordable to families that could make use of them. Many families are forced to live in “exurbia”, far from employment centers. This contributes to sprawl and, also, global warming, because the parents must travel further to work.

  • Helen

    I was a Carer for over seven years it left me emotionally drained and very sick. People don’t realize that not only do you become socially isolated and live in abject poverty ( you can’t put away any savings or superannuation if you can’t work). But you also develope mental health and other serious illnesses as a result of caring for a person over a long period of time.

    This increases the cost to the community not only socially but financially and morally as well. I say morally because we are forced to submit to religious dogma that has prevented those who would like to die with dignity and in a manner that is acceptable to them as individuals from obtaining that peace.

    If you are going to argue religion then God gave us free choice he also created plants with a purpose. These plants are poisonous and can bring death in a rapid manner.

    The Constitution gives us freedom of religion that means the freedom not to follow any religion

  • Dbn

    I am always amazed that a program like your will discuss the hardship of the caregiver, the cost to patient, family, etc, and the quality of life for the patient without discussing the real answer–euthanasia. That 90-year old lady, and her caregivers, would be much better off if she were gone. The media fails to discuss this humane end to life, while discussing the great expense to keep patients alive, because you are all afraid of the Religious Right. These are the same people who want to cut all public programs which would support these patients and their caregivers. I was happy to read other comments which support humane death decisions. When my quality of life is over, I hope someone sticks a needle in my arm and turns on the happy juice, rather than having me linger on for one more breath.

  • http://www.facebook.com/people/Craig-Smith/100001646363544 Craig Smith

    And to think, our “system” put Dr. Jack Kervorkian in jail, for Christ sake.

    Face it, America; the good Dr. was 30 years ahead of his time.
    It will be commonplace in another decade or two to see all kinds of people using the Dr. Of Death’s remedies. There will be NO way to stop it either. This countries government should just start exploring the issue that Jack raised so many years ago, and embrace the fact that many many families cannot afford old granny to sop up all of their worldly possessions and funds..
    If not, then Americans will be traveling to foreign countries to end the suffering and pain. There are places with fairly reasonable prices, where one can take the road out. So why not just start doing it here?

  • http://www.facebook.com/people/Craig-Smith/100001646363544 Craig Smith

    “Dying Centers”.

    Soylent Green is People!
    (sorry, i just had to.)

  • Nancy

    I think for most people long time care insurance is a rip-off. My 2 friends who paid into it for years were unable to get a penny’s worth of care…it is necessary to be practically at deaths door to qualify..then..there is a waiting period of several weeks after waiting for several weeks to be evaluated. By that time you are dead

  • mary

    I think withholding antibiotics from late altzheimers patients should be
    seriously considered. I have never heard this mentioned. Harsh as it may sound,
    There is an old expression “pneumonia Is an old man’s friend”.

  • mary

    I feel that witholding antibiotics ought to be considered for late stage alzheimers
    patients. I have requested this in my living will/advanced directives. I have
    not heard this idea brought up in any of these discussions.

  • Nina

    Fortunately we were able to financially help family members who were the caregivers for our mother. It is an a crushing position to be a caregiver and to experience the loved one decline and to always be the selfless one. I applaud what R.I is doing . I applaud the doctor’s honesty that he was in denial about his own old age future…We all are! With the help of such programs as this one, we can move forward thoughtfully.

  • Thomas Atwood

    Two words — Hoyer lift.

  • Anonymous

    Some of the comments are stunning. So many are focusing on euthanasia as a solution to the problems of a growing elderly population. Certainly, an individual ought to be allowed legally and functionally this option. But, ought not a society be able to offer life and dignity within it as an option, if its ever to consider itself remotely a success? I’ve been a geriatric care manager for over 12 years. We can afford to care for our eldest. Yes, we’ll have to pay. But, are not millions unemployed? Must these people only be allowed to be employed if they can only contribute to the creation of some gadget that competes with another gadget in the global marketplace? Keynes correctly postulated that to start an ailing economy, it would be sufficient to employ one to dig a hole and another to fill it. I’d say that public or private capital that employs millions in care giving could “kill two birds with one stone”.
    -Mark Zilberman, LCSW
    http://www.NorthStarCare.net

  • I Z OPNYDE

    gee all this and no one wants to claim any responsibility for our disabled human beings who for one reason or another have landed in a permanence of LTC (long term care)? Anyone? Anyone? If you stayed in a long-term rehabilitation center, you have been exposed to the exploited. This is something our legislators will never talk about. But neither bid MPR when my comments were edited out of a discussion about LTC and healthcare. What was interesting was the moderator focused most of the time on a Dr who’s claim to fame was his opposition of “expensive” machines and the support staff to run it. Well a couple of those machines and their support staff kept my wife alive and further more if the Dr who did see my wife the first time she had a brain attack (stroke) would have ordered an MRI she would have survived and not been made disabled but be alive! So tell me dear reader are you going to be the one who says “Oh, that’s OK (mom, pop, son, daughter, wife, husband or significant other) they don’t need a SCAN. We’ve got $6, 000 to $12, 000 to spend on their healthcare a month.” The old saying goes “save a penny spend a pound” By the way, anybody figured out jus why the average stay in a “facility” is less than 5 (five) years (these are not my numbers).

  • Anonymous

    I’m 65 yrs old and in decent health, currently. I watch this episode and pondered on my future, should I become bed ridden, needing someone to care for me completely, as this elderly lady they gave an example of.

    I’m sorry, if I ever became this way, I would NOT want to put this BURDEN on anyone in my family, even if they wanted to. All I can comtemplate is shortening their lives and HEALTH from having to care for me like that. Why should anyone be engaged like this 24/7, IT IS NOT RIGHT!

    It’s why I believe, when it comes to the end of my active life, I should have the RIGHT to say how I want go, and its why we need MORE Doctor’s, like the Doctor they imprisoned for helping people in situations like this woman, end their lives. I bet this woman hates doing this to her 60 plus year old son, looking like hes 75! It’s not RIGHT, why should he end his days caring for someone who should be at peace?

    Truth of matter is, if you don’t have Insurance, Society will let you die anyway, and in ANY CONDITION! If you’ve used up all your Benefits, Society will let you die anyway,in any condition; therefore, why should one allow the Nursing Homes, Doctors and Hospitals eat up all your savings, because once they run out, so will you, and you will die quicker anyway!

    In addition, with the Tea Bagger/Republican Congress, trying to get President Obama to GIVE UP/CUT Social Security and Medicare Benefits, they are DEMANDING that we DIE QUICKER anyway, just so they can channel the FUNDS to Wall Street and their Cronies …. as in the Health Insurance Industry, the Bush Admin allowed in to LOOT/RAPE/RIP OFF Medicare/Medicaid! If anything or anyone should be CUT out of these Programs, it should and must be, the Insurance Industry whose looting these Programs ….then we can save BILLIONS, and the Program, as it was intended, to endure longer for those who are currently INVESTING, into SS, therefore definitely NOT an entitlement Program!

  • Anonymous

    I’M ALL IN, LET’S GET SOMETHING STARTED! I can’t imagine placing this burden on my son’s or grandchildren! For they have a life to live, and that’s not taking care of my immobile body! Like you, I’ve LIVED my life, and I certainly don’t want to SHORTEN THEIRS!

  • Anonymous

    It’s totally sad that you don’t have support, for I can imagine the stress this places on you. I wish we lived around one another, whereby we could give you a “regular” break! What is that saying, “Once a Man, Twice a Child,” looks like its a true statement. God Bless You!

  • Anonymous

    Thank you, I could not remember Dr. Kervorkians name! We live in one selfish, greedy CAPITALIST Country! It’s all about what they can take from us. But you better believe, when there is no more to take, they will kick us to the curb and watch us die on a sidewalk anyway! They ONLY CARE as long as you have money or Insurance! Case in Point, look what the Tea Bagger/Republican Congress are DEMANDING, to CUT anything Program that will help the Elderly and the Needy! And we don’t have the RIGHT to end our lives w/Dignity, when we become bed ridden and helpless, they’ve got to be kidding me!

  • Anonymous

    Where is the discussion about the outrageous cost of nursing home care? Why are their costs so high? (One likely reason: Because they have shareholders to keep happy and satisfy and greedy owners with constant profit hunger.) It’s not like they have a lot of costs to deal with–pay their employees decently or provide quality food or healthcare. The air is usually rank with the odor of body fluids, because there is few staff to deal with these issues.

    Both of my grandmothers were in nursing homes. I observed and spoke with staff and have family who have worked in nursing homes. There is usually one RN/LPN per shift. They are paid less than nurses at a hospital. There are usually 2 and maybe 4 nurse’s aids during the day to take care of ALL those people. They usually make minimum wage. They are overworked and turnover is usually high.

    Residents are awakened, strapped in a wheelchair, and wheeled to breakfast. After breakfast, they are wheeled to their door where they may stay until lunch–wheeled to lunch–maybe put in bed for a nap or left in the chair until dinner. They receive NO extraordinary care to justify the high cost of nursing home care. I don’t blame the staff. I blame management.

    Why not investigate the nursing home industry?

  • chriswalk

    Why wouldn’t the states agree to pay in that way, when they are saving money by freeing up nursing home beds, which cost much more