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The Many Costs Of Elder Care

Jacki Lyden in for Tom Ashbrook

The emotional and financial costs of taking care of elderly parents.

An increasing number of Americans are staying in their homes as they age and receiving care from a mixture of professional and family caretakers. (AP)

An increasing number of Americans are staying in their homes as they age and receiving care from a mixture of professional and family caretakers. (AP)

A new report belies the notion that Americans ignore the aged–in fact, some 61 million Americans care for a relative.

And if you added up all that unpaid labor, it would exceed Walmart’s total sales: 450 billion dollars.

Caring for the elderly at home is the ‘new normal,’ says the AARP. And its having a deep impact on our lives, as Baby Boomers empty their savings, and the phone rings at work: and its Mom, again. For the sixth time that morning.

This hour On Point: the caregiver’s dilemma.

-Jacki Lyden

Guests:

Susan Reinhard, senior vice president at AARP (formerly the American Association of Retired Persons) and director of their Public Policy Institute.

Eileen DeGaetano, a caregiver.

Christina Irving, social worker at the Family Caregiver Alliance in San Francisco.

More:

You can find resources for caregivers here at eldercare.gov.

You can read the AARP report here.


AARP’s caregiver website is here.

Yet more resources for caregivers here at caregiver.org.

From The Reading List:

Please follow our community rules when engaging in comment discussion on this site.
  • Sheila

    my 97 year old dad has recently gone into a nursing home at the cost of 9K a month… if I could have kept him home with 24/7 care it wouldn’t come close to 9K a month… nursing homes are a racket, big time.  Shouldn’t we be able to use the money Medicaid is so anxious to pay out to the nursing homes for in-home care instead? So much better for the elderly, so much better for the rest of the family but way too logical to be an alternative to warehouses for the old and infirm.  By the way, 9K a month?  the majority of women (and few men) working at these places are lucky to make a buck or two over minimum wage.   where’s all this cash going?

    • Kathi

      Sheila, MA has a program called Caregiver Homes which essentially does that — it will pay you to take care of a family member in the family home.  I believe the program started a couple of years ago.  If we had known about this program, we would not have placed my mother in a NH.

      • John Bourke

        Heh – didn’t read through the thread…didn’t know you’d already posted about this. :)

        • GLH

          I am glad you read the whole schmeer. That is the best informational aspect of On Point, deconstructing the posts. Some of the regulars have schooled me.

    • Thinknaboutit

      I’m sure there is an army of lobbyist that fight tooth and nail against policies exactly like this.  There is too much money to be made to allow such a simple cost effective solution.  This type of approach would likely increase the quality AND quantity of life of our elderly citizens.

      What if we could even take it a step further and offer the same incentive to “foster families”?  Perhaps empty nesters with plenty of room and willingness to host those whose children cannot or will not.

      • GLH

        Did you see the RT report about how foster family placement is working in Russia?

    • Carrie

      The Connecticut Home Care Program for Elders sometimes can be of help keeping our elderly at home and the cost is much less than nursing homes.  Call 860-424-4904 for further information

    • Cory

      Vive Le Capital!!!

    • Emma Lathan

      Boston Senior Home Care also has a program that will pay caregivers to provide care to clients in the home on MassHealth Standard or MassHealth Commonhealth. It is called the Shared Living (AFC) Program: http://www.bostonseniorhomecare.org/ourServices/sharedliving.html.

      They do take some clients outside of the Boston area and provide strong follow up to all clients. The minimum age for the client receiving the care is 16. 

      The program can accept eligible clients that are on Senior Whole Health, Evercare and CCA insurance as well.

      Boston Senior Home Care also is home to a Caregiver Alliance, which provides support to caregivers around many topics: http://www.bostonseniorhomecare.org/ourServices/caregiveralliance.html

      To make a referral or to enroll, call Boston ElderINFO at 617-292-6211.

      • John Bourke

        Emma, there’s also a program for paying care-givers through CareGiver Homes of Massachusetts (caregiverhomes.com), a wholly-owned subsidiary of Seniorlink. Just discovered ‘em; they, too, pay in accordance with Medicare/Medicaid standards, so the spouse of a “client” can’t be paid, nor can a person who has any dependent children. 

    • Yinyangnh

      Sheila is so right.  We have built a whole industry around aging that is not healthy or affordable.  My grandparents were in nursing homes and my parents were so frightened they would wind up the same.

      • GLH

        Medical care in institutions is usually really neglectful and error prone. Absentee doctors take a contract and treat the residents like a herd of beef cattle. 

    • GLH

      Profits.

  • Kathi

    You may find a new book co-authored by a Boston area husband/wife to be of interest — it is a caregiving memoir which touches on the economic and emotional realities of caregiving.

    Amazon link:
    http://www.amazon.com/Her-Final-Year-Care-Giving-Memoir/dp/0615512054/ref=sr_1_1?s=books&ie=UTF8&qid=1311812773&sr=1-1

    Website:
    http://herfinalyear.com/

    Blog:
    http://herfinalyear.com/wordpress/index.php

    Best,
    K.

  • Thinknaboutit

    I do volunteer work with hospice patients in and around a major metropolitan area.  I’ve been in nearly every nursing home and retirement community within a 100 mile radius of my own home and know first hand that some are better than others.   The price of the facility isn’t always the reason for better care, more often it has to do with the attitude and dedication of those providing the care. 

  • Anonymous

    The emotional and financial cost of being a caregiver, especially an “only child” caregiver, is much more significant than realized by our politicians and their bureaucracies. When, as has happened to me and to others, ones employer has no “care” for the caregiver, the situation and the depression really take a toll. As Baby Boomers not-so-gracefully age, it will be interesting to see if more assistance becomes available to support in-home care.

    • Kathi

      If I wasn’t married, I would have been in that exact situation.

      • GLH

        Sometimes you have to walk away to survive. 

        • John Bourke

          Sometimes, the type of “surviving” you gain by walking away isn’t worth the loss of your humanity.

          • GLH

            Sometimes they’re ineligible for the good help until the incapable relative vacates. My mom is deceased but I wouldn’t be able to help her toilet. Besides being little I gag easily, and it would destroy the kind of relationship I had with her. People also have debilitating histories with family as I described in my story above.

    • Margbi

      Thank you, Doug. Caregiving IS difficult. Something you didn’t mention, because women generally outlive men, older women become caregivers for their ailing husbands and then depend on their children, if any, to provide care for them if needed. Read “A Bittersweet Season” by Jane Gross for an absorbing story of care of an ailing mother by a brother and sister. 

  • Terry Tree Tree

    Anyone with an inflated ego, should spent a few years properly taking care of an elder, with Alzheimers.  I have watched people taking care of family members and friends with cancer, stroke victims, and other disabling diseases and injuries.  Proper Care-Giving takes a VERY Special kind of person!

    • Ellen Dibble

      Even a totally “together” senior can require unbelievably special people.  Grumpiness seems to accompany old age if the disabilities are more of the physical sort.  Every single caregiver will be more or less despised, and more or less suspect.  Even a team can hardly hold up against that sort of disrespect.  I’m chuckling, but that’s because I didn’t have to participate, just listen to the emotional overflow from one of several caregivers.

  • Terry Tree Tree

    Careful, honest evaluation is needed BEFORE you become an in-home care-giver.  Alzheimer patients, and others can be DANGEROUS!!  Get the facts of the ranges of problems with whatever conditions you are going to be dealing with!

    • Cory

      Terry is right.  I cared for an Alzheimers patient for over two years.  He punched me every day when I performed his cares.  It’s rewarding work if you don’t have a glass jaw, tho! :) 

      • Terry Tree Tree

        My estimate of you just soared!

        • GLH

          This is a mean old lady who doesn’t want anyone but the wealthy to be able to own a house. I think she fantasizes about being a landlord or developer of tiny cheap apartments all night. But she is smart and hardworking and tries to plan her old age. My estimate-”Typical, opinionated, wordy.”

        • Cory

          I appreciate that.  Are you sure you don’t just like the image of me being slugged repeatedly for 2 years?

      • Ellen Dibble

        It’s rewarding work?  OMG, I hope if and when I get to the point of needing such care, you, Cory, or one of your clones (?) will be caring for me.

      • GLH

        And imagine if that irrational rock’em sock’em robot is your mom or dad… worse than a zombie movie. Enough meds would constitute murder by poisoning.

  • Ed

    And because we are missing so many young people because of abortion, it’s very scary because there aren’t enough people around to care for them, and us. See the video Demographic Winter.

    • http://richardsnotes.org Richard

      …and because the George Bush / Dick Cheney administration cut funding for stem cell research people need more care as they get diseases that we were close to controlling before the cuts.

      Do you actually think we lack people in this country Ed? I think we have plenty of people and plenty of people who will take jobs as caregivers. Of course, some of them may be illegal aliens… That’s another issue having nothing to do with abortion.

      • Cory

        You shouldn’t waste your time replying to Ed’s posts.  He drops his anti abortion comment and leaves til his next drop.  Ed doesn’t do dialogue.

        • http://richardsnotes.org Richard

          Cory: I’d say that’s the definition of a troll: folks who drop comment bombs and leave. Thanks for the heads up, I was giving Ed too much credit for being polite. I think maybe I was conflating his behavior with Winston Smith’s.

          • Winston Smith

            I, Winston Smith, resent that comment.  Would you prefer 10 emails per show rather than just one (and being accused of dropping and leaving)?  I certainly want medicare to be there when I retire, which is not too too far away.  But the fact of the matter is that medicare is bleeding money due to runaway medical costs, waste, fraud, and abuse.  The actual costs of the program have been many many times what was initially projected and rammed through congress in the 60′s when the democrats were in charge.  But if they had been honest, it wouldn’t have passed, and we couldn’t have that happen.  We need to solve the problem with runaway medical cost, whether it be technology that we simply can’t afford, sweet deals with Big Pharma (Bush’s fault), overpaid physicians, medical malpractice and insurance costs (ambulance chasing lawyers…democrats fault), etc.  the answer is not to simply continue to raise the debt ceiling to fund a bankrupt system until the whole economic system collapses.

          • THinknaboutit

            Can you please explain how ambulance chasing lawyers are Democrats fault?

          • TFRX

            Because only Democrats care about the little people’s right to sue. If the riff-raff gave up their right, unilaterally, there wouldn’t be so many parasitic lawyers, and corporations wouldn’t keep them on retainer to battle like Titans in our courts, and everything would cost less.

            Like healthcare in McAllen, TX.

            And insurance rates for one thing never increase
            when an insurance company pays off for a disaster in something else.

          • GLH

            It’s like the firemen and police and other 9/11 rescuers in New York with lung diseases. The government has decided the Trade Center dust was harmless and now they get no compensation. Lies secure the bottom line. Who can call such an economic or governmental system legitimate? (Many T-party government haters are half right, but they forget the hated government serves the Oligarchy. And they worship the wealth of the Oligarchy. When people say kool-aid they mean a jackpot mentality.)

          • Terry Tree Tree

            Fraud, Waste, Abuse, Physicians that should be behind bars for rampant malpractice, Sweet Deals with Big Pharma, etc…, were NOT part of the original Medicare Plan!   These same crimes are part of nearly ANY government program, and NEEDS to be eliminated! 
                Mal-practice Insurance is so high, in part, because the doctors protect each other, instead of following the Hippocratic Oath, and getting rid of the mal-practicers.  Yet, doctors WHINE about the high cost of malpractice insurance.   It’s a lot like Catholics WHINING about being identified with molesting and abusing priests, which they protect!

          • GLH

            Terry, I’ve seen some of the very best and kindest doctors destroyed by institutional expectations involving insurance guidelines, medicare fraud, corporate medical office practices and the inability to treat the poor. Capitalism has no place in medicine. Single payer must come if we are to survive. Even Thomas could do more for his cantankerous mom if we had it.

          • http://richardsnotes.org Richard

            Winston: You should. You’re not a troll but your comments are predictable, so, the confusion with Ed who’s comments are also predictable.

            By the way, what we’re doing here is not “email” it’s called “commenting.”

            I would love it if you could have things your way for you and I could have things my way for me. I’ll bet you’d have pulled your social security out of the government’s control and invested it in stock during the Bush years.

          • GLH

            As the Three Stooges used to intone,”I resemble that remark.” 
            If we are open and honest all of us frequent writers can admit we seek attention and restate the same arguments. For many of us this commentary is a rare and welcome outlet in aan isolating existence. Still, the Internet in the USA is limited in its organizing potential. Your computer cannot tend your senile parent either. 

          • http://richardsnotes.org Richard

            GLH: My opinions, which run counter to Ed and Winston aren’t typical either. There are a few things (amazingly) that I agree with Gregg on (just a few) and I think there’s a bit too much predictable anti-business knee jerk here which has to be parsed out.

            Best to keep ‘em guessing, that way they read.

            The one thing I will continue to say over and over is this:

            Never forget: Bush and Cheney broke the country and Obama has been digging out of their mess since he took office. He’s far from perfect but compared to those two war criminals he’s a saint.

          • GLH

            Richard: Capitalism has become a fundamentalist religion in this society and I will not temper my criticism of the harms. Ten years ago I was a progressive Republican with a 15 year career as a Senate aide to Arlen Spector. I have seen the insides of government. Jeremiah Wright was correct in his assessment of politicians. I write something every week on Truthdig about why we need a third party, but I really believe we need an Egyptian styled revolution. I am in DC right now witnessing the  faux debate. I can’t decide whether to go to the SOA Watch thing in Ft. Benning or join the occupation of Washington in October. At age 55 I suffer from dwarfism and will probably live less than 5 years more. I’m trying my best to do the right things while I can still walk and talk. I just got off dialysis after a food borne infection. If it weren’t for our dependent groups I’d advocate for default, but I think we owe the elderly, young and disabled something. They are citizens and people too. So I share all that I have and live a very Spartan life. I don’t save for retirement. I live. (Barack Obama has been skillful in embarrassing the fascists these last weeks, I’ll concede that.)

          • http://richardsnotes.org Richard

            GLH: See, I like talking with you yet we agree on very little. Still, I respect your take on things because it comes from experience and thought.

            If we had medicare for all your medical situation might be a bit easier to handle. The push back on this is people believing that insurance companies have a right to make money off of our illness. It’s the most twisted piece of logic I’ve heard in a long time. I’d love to do away with insurance companies in the health area completely. I’ve been doing my mother’s medicare paperwork for 14 years and it’s as simple as pie compared with my own insurance claim paperwork and I have a decent policy through my wife’s work.

            My mother is lucky enough to have AARP supplemental, something that’s gone now but makes her life much easier. Between Medicare and that her situation is pretty well covered. I hope/wish I’ll have half as good a coverage if I live as long as she is.

          • Brett

            but your computer can facilitate remote monitoring, communications and more effective care management through video calls, alerts, etc

            check out Dr Teel’s book, it’s a really effective plan, working today in Maine

            http://www.chelseagreen.com/bookstore/item/alone_and_invisible_no_more:paperback

          • GLH

            Lack of computer capability, and the temptation of messing around with the equipment seems like something that might employ a fulltime geek in addition to CNAs and aides. I’ve had repeated experience with independent livers who could not even use a cellphone. Answering the landline was the height of their powers. And this equipment doesn’t come cheap either. Just like medically related devices and scooters some parasite would be overcharging for it. My wife and I recently spent half a day helping an elderly neighbor (vision impaired) find his life alert button lost in his backyard garden. You’d think a clothes dryer saved labor until you try line drying in the hot summer sun. Technology is not a good in itself. We made that same mistake in education. No substitute for genuine caring, in fact, an insult to our organic nature as social beings.

          • http://richardsnotes.org Richard

            GLH: Technology can extend the reach of an excellent caregiver (or a caring offspring like me). Not sure what “organic nature” is but I assume you mean “analog” as opposed to digital. I agree, a hug is a hug and I want human arms around me. But, there’s more to helping older folks than hugging them and technology can be quite helpful.

          • Ellen Dibble

            It seems to me a particular age-related challenge is to learn to switch from, say, a lifelong partner as caregiver to some idiot who barely speaks the language.  Pardon my French.  But I can imagine getting old, losing my loved ones, and despising the “replacements.”  Or, alternatively, I can imagine knowing how to size them up and take advantage of what these substitutes can offer emotionally and physically.  Like anything else, some elders will be able to derive as much interaction and as much touch as needed with very little actual time, and others will be insatiable.  I think I’d have very little patience with the latter.

          • http://richardsnotes.org Richard

            Brett: I remotely run the life of my 96 year old mother who lives in Los Angeles (me in Connecticut). I run her finances, I can clean up her computer (iChatAV remote desktop on a Mac) and I can video chat with her easily from anywhere I am on earth (that has wifi).

            Because I started doing this stuff with her over ten years ago she’s able to keep up with it now. Had I started this with her now she’d need an aid to help out which would also be fine.

            It’s far from perfect and no doubt future generations are going to have it better because they’ll be used to this stuff as they get older. 

          • GLH

            I think some of these trolls may be the same misfit with different emails. My opinions are not typical though, so some say I am a troll. Moderation has been inconsistent but has found a balance recently. I try not to restate the same thing over and over.

        • TFRX

          But there’s the Catbox Effect: At some point, leaving it alone for too long will give the impression that that’s the kind of thing we accept around here, as normative, without concern. Every so often, someone has to clean out the catbox.

          • Terry Tree Tree

            Not only the Catbox Effect ( I LIKE that), but he gives a chance to refute irrational attitudes held by a lot of people that don’t really think about their attitudes, and the other results of them! 
                Ed may not read them, but some may, that will think!

          • GLH

            Catbox! That reminded me of when I accompanied a friend to see his estranged 90 year old mother after a 20 year absence. She physically and emotionally abused Thomas as a boy and he had avoided her as an adult. He assumed his two siblings were caring for her. When we got there her house was a shambles with newspapers all over the floor, dusty and dirty with spills and piles of scattered articles. She had no cat but her urinary incontinence had produced a toxic nitrogen atmosphere you could smell from outside. She was sitting in a wheelchair at a cluttered table trying to make out a check for her utility bill. The kitchen was disgusting too. She began to tell Thomas how she’s just given his brother $500 to buy a puppy, and what a cute puppy it was. She will not allow any other human being to touch her and she has no will or plan of any kind besides a burial plot. Thomas thinks $2,000 in checking represents all her assets. She get a $700 SS check. It was hot and she refused to run her A/C. When Thomas called his relatives they said,”She’s Ok, just the same as ever.” Thomas is feeling guilty but cannot be a caregiver. He is disabled with a back so bad he has a pain pump. We talk nice on here about the situation but in fact some people are left to stew in their own vinegar.

          • Ellen Dibble

            I think if someone calls elder services, in most localities, “they” have the legal authority to take an elder from an inhumane situation, and remove them to a nursing home, which is arguably better.  If the inhumane environment is of their own making, I don’t know — it’s not like a caregiver is creating the problem.  But I think the determination of it being unclean and unsafe, “a danger to oneself or others” begins to apply after a certain point.  A family member who knows she’d prefer to stew in her own vinegar but sees something like that situation is in a quandary, I suppose: To tell the authorities or not.

          • GLH

            Thomas thinks really slow because of his pain and meds, but he was careful not to let his animosity at her cruel treatment when he was little cause him to act rashly.  A neighbor noticed a change in the odor in July 2010 and she was found dead (age 92, two days, from stroke) at her typewriter before a letter of spite written to a slightly younger relative. She enjoyed playing cruel pranks and hurting everyone’s feelings. She could stand no touching or care from others, and gave none. Thomas and I felt better after that because she died as she lived, alone and defiant. When I have doubts I look at Thomas’s gnarled right ear she nearly twisted off because he refused to eat pork chops. She had grown up in a mining camp in the 20s and 30s and left for a job in a WWII nuclear plant at age 20.  Her marriage consisted of constant nagging and threats toward her husband to make more money until he overextended himself and died on the job. She was truly from a lost era.
            Maybe what I’m saying is that elder care ideally would allow for the eccentric who would otherwise be restrained or drugged. And what kind of life is that? We never contacted any agencies because they would not be able to meet her unusual needs. And the son who got the dog coughed up most of the mortuary costs. Thomas is the subject of one of my films, but that is another story.

          • Ellen Dibble

            Wow.  That’s what I call Dickensian, both in description and plot trajectory, so to speak.  She may be from a different era, but you can be sure more eccentricities will be coming into the second childhood, the helplessness of far advanced years.  I wonder if there isn’t a course or a book in how to behave when you’re helpless and old, and then I think of the cases of people taking advantage of old people, figuring they and their money are dispensable, and I think it’ll be a good idea to become crusty and somewhat abstracted.

      • notafeminista

        Terry brings up an excellent point – how many posting in reply to Ed have taken in an indigent geriatric patient who has no family and hosts them in their own home? 
        Incidentally the Bush argument regarding stem cells ONLY referred to embryonic stem celsl and did not in any way shape or form alter or de-fund the already current and almost commonplace use of adult stem cells.  This was in part because the science addressing embryonic stem cells has yet to come up with a viable use for said embryonic stem cells.  Some of the results have been downright horrific.
        Lastly, and this is specifically to Richard, are you suggesting there are too many people in the US?  Or on the planet?  What do you suggest as a viable alternative to humans?

    • Terry Tree Tree

      So, Ed, How many children have you ‘fathered’ and left the mother with no support, the nine months of decreasing work-ability, the eighteen years of responsibility of raising?   How many children of those, or worse circumstances, are YOU taking financial and mentoring responsibility for?

    • Ellen Dibble

      I expect I will be having caregivers in my old age who speak Spanish, or mostly Spanish.  So I’m trying to learn a little of that.

  • Cory

    Dark days ahead for the elderly as our society goes about the business of dismantling the social safety net.  People have some scary ideas about what they’ll do when they are told they can never retire and medicare doesn’t effectively cover the cost of their old age medical costs. 

    A note to the well to do…  I suggest building the walls of your gated communities very high to deal with the coming times.  Entitlements are the target today, but it might not be long before the suffering masses put the bullseye on you.

    • TFRX

      Oh, I’ll add on: Find a Brazilian personal security consulant, and get ready to do in a decade pretty much everything they do now.

    • Ellen Dibble

      Cory, as society moves away from nursing homes and becomes better able medically and technologically to maintain people in place, this cost will become more manageable, whether to the individual or to the government.

      • Kathy

        Sadly, government policies are not moving towards helping people stay in their homes.  There is a consistent chipping away at support of people in their homes.

        • Ellen Dibble

          Whereabouts do you live?

          • Kathy

            Massachusetts.  From my research on the internet the change was through the federal government.
            We have definately see her home health aide hours decrease from before 2000 and after.  She lived with me in 2009-2010 and recieved one hour of HHAs, M-F and that is all I was told Medicaire would offer.
              Are you seeing something different where you live?  Is there some way to advocate?

          • Ellen Dibble

            Wow.  Federal.  You’d think Massachusetts, with their health care mandates, would see advantage to providing the less expensive option.
                 Is there MassHealth for people over 65?  If you have Medicare supplements from Blue Cross or AARP or the other providers, do they provide more in-home services?  I’m about to pick something for supplemental coverage when I get to 65, so.    I am in western Mass., and there is a lot of focus on staying at home, but on the other hand, there is a lot of focus on extracting as much money as possible from seniors who have, shall we say, deep pockets.  If a group of seniors pooled their resources and lived in a sort of coop, with a shared nurse, that would seem to be cheating the system out of possible profits, but that’s the kind of thing I hope to get approved.  I tried once before, and got shot down so fast it wasn’t funny.

  • Michaelmaczesty

    I am really glad that you are covering this topic today. We are about to have a huge shift in population, away from youth and toward the retirement of baby boomers which is going to bring an avalanche of need for elderly care and we are woefully under-prepared for it: http://michaelmaczesty.blogspot.com/2011/06/senile-america-2050.html

  • Anonymous

    It’s time have CPI-E become the COLA  measure.  It’s measures the actual purchases made by seniors & disabled beneficiaries.

  • Jcarberry

    Its not work its family! Trying to put a dollar value on what we do for our parents demeans all.

    • John Bourke

      It’s not “work” like a common job it is “work”… programs that help provide income for that which is given up or lost when the family takes care of its loved ones is very important. It’s very much “work” in the sense that it is more than simply “babysitting” – it requires attention and care that exceeds many common definitions of “work.”

      • Ellen Dibble

        I am thinking of a case where a potential family caregiver is a drug addict, and is trying to maneuver through the legal system through the evaluation by guardians ad litem and so forth, to become the legal guardian of an older family member.  This individual may desperately need access to the money, and the senior in question may not be able to evaluate the trustworthiness of an apparently very loving young relative, let alone know what to do in the situation. 
           Here we are assuming that the caregivers at least start out responsible.  Very, very responsible. 

        • GLH

          Maybe it is the drug dealer who needs the money, Ellen. The movie John Belushi wrote with Dan Ackroid (Neighbors) where Dan played “Captain Vick” depicted the kind of opportunists who sometimes gravitate to caretaking. 
          I myself learned too late of an elderly aunt kept shut in the back room for 20 years while the daughter spent her retirement check on cigarettes and beer. The poor old thing lived on Boost and cornbread. When broadcast TV was cut she died, no cable. They were thinking of buying a deep freezer when she passed so they could delay reporting her demise until later, and still get the direct deposit. In western NC and other pockets of poverty this is a common story.

          Contrast that with the idea of having a computer with camera monitoring and chat capacity, aides dropping in to cut your toenails. These salespeople are living a fantasy. Stick with the mobility scooters. They’re bad enough.

          • Ellen Dibble

            I think you misunderstood.  The drug addict wants to be the “caregiver” because of the “legally” available funds, and I’m wondering if the legal system is up to weeding out the people who are going to feed their addiction off the benefits of the elderly.  You seem to see the same danger.
                At least living in a nursing home one is surrounded by others in the same situation.  Somebody is likely to have a relative who comes through and can take notice.  If one is alone with an “approved” caregiver, or certain, um, relatives, one can be, as you say, trapped.   It seems to me far, far better for people to work longer in general and cut into the potential for decades of mistreatment (and waste of money, government or otherwise). 

    • Terry Tree Tree

      The time, expense, effort, health problems, etc…, subtract from the care-givers’ ability to contribute to profitable endeavors, thereby subtracting from the economy.   That negatively affects care-givers’ income. 
           In the conventional sense, it is work, and a lot of it!
           For you and many, it is a labor of love and respect, a very admirable undertaking!
           Placing a dollar value on care-giving, has too many variables, which change with each care-giver, and patient.

  • http://herfinalyear.com Her Final Year

    Jim Downey & John Bourke were primary care-givers for their respective mother-in-laws. They wrote “Her Final Year: A Care-Giving Memoir” in response to the many times people remarked about how rare it was to find a male care-giver, let alone a son-in-law, serving as a primary care-giver. We think it’s part of the growing “new normal.” …we’re listening live, now, and would be happy to call in. John lives in the Boston area.

    • John Bourke

      I’m listening, and willing/able to call in if the opportunity arises.

  • irene

    My parents made it very easy for me:  they had my name on a checking account and safety deposit box.  They had living wills and medical proxies in addition to testamentary wills.  They executed a general power of attorney to cover anything the other documents did not. Nevertheless, the eighteen months that began when my mother broke her hip and ended when my father died were the hardest time of my life.   

  • Ellen Dibble

    If you (I) don’t have family, I assume there is a lawyer who sort of oversees things, gets to sign off on certain things?

  • BHA in Vermont

    My Aunt is currently employing 24 hour “in home” heath care with house visits from PTs and a separate bill payer. She still signs all the checks.

    The nearest relative is my older sister, over 400 miles away, so we can’t help much day to day.

    The caller’s ~$10K/month is now ~$20K/month. My Aunt has the money and I’m glad she can stay in her home of 50 years as long as possible.

    • Ellen Dibble

      There are strategies to prepare so as to insulate extended family.  But I notice that long-term care insurance is getting scarcer.  I managed to snag a good plan a decade ago which I am told is no longer on offer.  And my insurance adviser told me not to count on the federal government passing anything remotely like it.  And indeed something like that is on the chopping block in the House and Senate today.  This insurance is a lot cheaper to purchase when plenty young, like age 50.  I’m listening to hear what else I can do.  I have an apartment that could accommodate another person living here if I were not working all over the place.  And the city is big enough to provide lots of services.  The hospital up the street says to Call Us Today if you are over 55 and have difficulties defined VERY broadly.  I’d like to talk to the young lady who manages that program, the stay-at-home program.  The government already offers rides to appointments, and there is food delivery available.  So they’re working on it.

  • Olivia76

    I think this is an extremely important topic to discuss; It’s something that will eventually impact most of us.  However, I’m thoroughly annoyed at the focus of this piece–that caregivers are providing “unpaid labor [that] would exceed Walmart’s total sales: 450 billion dollars.”  Is this reflective of the values of our country?  That it all boils down to the bottom line?  That it “interrupts [the caregivers] daily life” and is and “obligation”?  Sure, I don’t disagree with that, but trying to put a dollar value on caring for an elderly or disabled parent is ridiculous.  It is exhausting, heart-wrenching, soul-draining work, but one will never regret the care they give to their parent(s).

    • THinknaboutit

      We similarly put a dollar value on childcare don’t we?

    • John Bourke

      Olivia – none of us (Jim Downey & his wife Martha John, or I and my wife Kathi) regret the care-giving role. The importance of communicating the impact of care-giving is to recognize all the elements of it – good, bad and ugly. That includes preparing people to know what the potential financial costs are; and the only way to ensure creating any kind of programs or supports to help families is to attempt to assign a dollar value and then find a way to meet it.

      We haven’t figured out what our “costs” were – we know we took a hit, and we also know we’d do it again. That doesn’t mean that opportunities we’d missed for programs that we qualified for would be ones we’d willingly overlook again.

      Having some way to control costs is one of the ongoing challenges to the care-giver, at least from my observation and experience. It’s an important element to acknowledge.

  • Kathy

    Hello, along with my 3 brothers I have cared for my disabled mother (she has multiple sclerosis) for the past 8 years.  She needs help dressing, making meals, eating, etc and is permanently in a wheelchair.  She is also a lovely woman.  She has required in-home services for the past 20 years.  There has been a BIG change in funding for home health services.  She used to recieve 6 hours a day through Medicaire.  Around 2000 the government changed the hours they will pay for home health aides and now they only pay for 1 hour a day regardless of needs/diagnoses.  This is a huge decrease in the program.  The lack of home health aide dollars leads to more stress on the family, but more importantly leads to many more people going into nursing homes.  Those with money can hire their own home health aides, those without money have few options.

    • Ellen Dibble

      It seems like a terrible government decision, because nursing homes are far more costly than home health aides, right?

      • Kathy

        Hi Ellen,
        Even worse…those with money have can keep their loved ones at home and those without put their loved one in a nursing home.  I resent the fact that the decrease in HHA money was due to fighting medicaire abuses (stopgap measure to decrease medicaire fraud).
        I know a woman whose mother also has multiple sclerosis and they do not have the money to care for her at home, so she is in a nursing home.  That woman feels very guilty, but it is not about her emotional desire to care for her mother…it is strictly economic.  That is a terrible thing.

        • Ellen Dibble

          The show focuses on the positives about family responsibility for aging seniors.  Bless the family caregivers and so on.   I have a family that seems to rely on denial and distancing if someone seems to be, um, going under.   We don’t do empathy.  Something like that.  By the grace of God, we do okay with that approach.  Call it insulation.  Looking at other families, it seems to me that one of the downsides to elder care is that the caregiver may be the one greediest for the social security checks to the household and the main slice of The Pie.   Considering that, the more Society (lawyers, insurance, local services) can provide for seniors, the better.  I don’t mind looking at it like that.  On the other hand, if an unemployed grand-niece  or nephew (one of maybe 50 by that time) WANTED to care for me, I’d want to be able to say, “You can do it under x, y, z conditions, but I have this alternative which would be fine.”

    • Ellen Dibble

      I just called a Home Health Aid place to see which insurance coverage for seniors provides the best home health aide support, and the answer was “we can’t answer insurance questions,” but also, “Medicare.”  So I called AARP to see what their supplemental coverage covers in the way of home health care, and the answer was that as of about a year ago, Zilch.  I can see from the Blue Cross brochure that for them it’s the same.  I am sure if I broke a hip or had a moderate stroke, I would need some care at home, and if I couldn’t get it, the cost to The System would be egregious.  So I guess I’d better plan on paying that myself until the long-term care kicks in.

  • Scott

    Any thoughts on the pluses or minuses of Long-term Care insurance as a way to budget the need for care for the elderly or young infirm?

    • Ellen Dibble

      When I bought Long-term care insurance, I was looking to having enough money available to be able to get myself up and functioning, rather than the sort of paddling toward death that seemed the alternative.  I had been through enough of a crisis already to know it is very costly, and thought another round of crisis calls for that level of support.  Still it is for a couple of years, not the stretch that say Alzheimer’s would require.  For that, another approach comes to the fore.

    • Anne

      My husband and I were told that LTCI was advisable for people who have “assets to protect”, which I think is code for having enough money so that you can afford the premiums and thus keep your old age care from being spent down to zero, leaving nothing for your children. Since we can afford the premiums, our parents and grandparents lived into their 90s, and there is a significant history of dementia in my husband’s family, we did careful research and bought LTCI from GenWorth. I think it might have been John Hancock that also had a very good plan.

  • Atomicdesign

    My partner and I have been taking care of his 93 year old mother for 7 years. Despite her age, she is fairly self-sufficient, but she does have increasingly limited mobility and memory issues. His family helps as little as they possibly can and the unrelenting responsibility does cause some tension occasionally, but we get through it.

  • http://www.rewardingwork.org Eparker

    In Massachusetts, family caregivers who want to hire personal care assistants to support their parent at home, may connect with qualified workers at the Mass. PCA Directory (www.mass.gov/findpca), a self-directed, web-based resource. Toll-free number is 866-212-9675. This is a free service for anyone receiving PCA services through MassHealth, the Massachusetts Medicaid program. People not on MassHealth may use the Directory for a small fee ($10).

    The directory, which has more than 8000 workers listed in Mass, is managed by Rewarding Work Resources, a nonprofit company founded in 2004.  Rewarding Work operates similar programs in Connecticut, Rhode Island, Vermont, and New Jersey.

  • Yinyangnh

    One of the best decisions my parents made as they aged was to move from Florida. We built an addition on to our home handicap accessible even though they did not need it at the time. My father died at home. Mother is 93 and physically able to care for her personal needs. The problems come in negotiating the healthcare system. It seems to be my job to manage all the information that a family physician used to do. You also lose your personal independence. As a caregiver you need to be proactive and resources are scarce and expensive.

  • Lynn in SC

    When you give up a job to care for parents, remember you are giving up Social Security contributions from your employer which will ultimately affect the Social Security you will receive. 

    • John Bourke

      And yet, there aren’t always any other viable options until a more comprehensive health care reform is enacted, like single payer. For now, families are facing tough choices – and the sacrifices they may make will have both short and long term impacts, but many times they make the choice they have to make: the choice of the needs of their family & loved ones over their own current (and future) security. 

      • GLH

        And then “conservatives” criticize them for such “irresponsibilities.”

        • John Bourke

          Odd, that.  ”irresponsibilities” seems to equate to “family values” in my dictionary…

  • MEisenberg

    In Boston, there is an organization – the Caregiver Alliance of Suffolk Co. – which helps caregivers from all Boston neighborhoods as well as Chelsea, Revere and Winthrop. We can be reached at (617) 292-6211 (Boston Elder Info) or at (617) 277-7416 x 605. We provide free support groups, one-on-one advising, and referral to caregivers of the elderly. Our staff speak English, Vietnamese, Haitian-Creole, and Russian. Our website is http://www.caregiveralliance.org.

  • Ned

    I also wonder how we prepare the community to better support caregivers.  What can we all do? More ideas at http://www.carecommunitycorps.org 

  • Phoenix

    Another item to the mix (maybe it was discussed, I only heard portions of the show) – parents’ pets… 

    My relationship with my sister has forever been ‘altered’ by her expectations that I would take some (or total, it was never clear) responsibility for my mother’s cat and dog.  Both are ‘high maintenance’, and my wife and are are both working, and my sister and her ‘other’ are both retired…

    Add to that the fact that Mum refused my suggestions about planning, so she’s spent all her money on home-health care…

  • Brett Bourne

    Dr Allan S Teel has a plan, and a book, about lowering the cost of elder care, while increasing quality of life, and care – see details at the publisher website http://www.chelseagreen.com/bookstore/item/alone_and_invisible_no_more:paperback

  • Lrduffsb

    Jackie,

    You just cut off the woman’s comment when she said something very important. She said that the help from Kenya said that Alzheimers is non-existent there. That may be for another show on Alzheimers, but was worth noting at least, and maybe getting comments from the experts.

    There are nutritional protocols that can help a lot with Alzheimers, backed by real research.

    Here’s a link for more info:

    http://www.garynullforum.com/articles/pdf/foundarticles1/lef/Alzheimer%27s%20Disease.pdf

  • JulianofNorwich

    A doctor in Maine is working on solutions to elder care, Dr. Chip Teel. Has anyone heard about that? His system combines web technology to provide simple monitoring, with community volunteers plus doctors to allow folks to remain healthy and independent. Good stuff.

    • Tlock1313

      Dr Teel was my parents doctor and his video monitoring program is really great for people who are in rural areas who want to keep an eye on a loved on.

  • http://www.facebook.com/profile.php?id=1386150876 Jim Reynolds

    The home care industry is far behind where we ought to be in this are. I own a home care agency (Caring Companion Home Care in Concord, MA – http://www.CaringCompanion.Net) and we provide daily reports on a private, secure, web portal for remote family members and caregivers. We give reports on meals, meds, hourly activity log, and daily summary, even photos. We also use remote monitoring at client request because we find that this improves the quality of care and reduces its cost. But we are the only home care agency doing it. The industry should be MUCH further down the adoption curve and should be using the web the way the rest of the world does.

  • http://www.fullcircleamerica.com Dr Teel

    We not only face a ‘gray tsunami’ of aging Americans, we face an epidemic of stressed and exhausted adult children of aging parents. We must all work together to create more options, to engage elders themselves in living in their communities as a hidden resource of wisdom and experience. We can turn the demographics and economics in our favor if we look at the issue differently. Sincerely, Allan S. “Chip” Teel, MD, author of Alone and Invisible No More from Chelsea Green Publishing, and founder of Full Circle America (www.fullcircleamerica.com)

  • http://pulse.yahoo.com/_62UOMOESSRRNZFNE5UOLVWWMMY Ines Illgen

    I just caught the last few minutes of this program and have something important to share.  I took care of my mother and another elderly relative who lived with us for seven years.  I’m now 63 and on disability myself, but have made sure that I won’t be dependent on my children.  My name is on a list to buy into a retirement village where I’ll be able to live independently, then move on to assisted living and then to skilled nursing should it become necessary.  I strongly urge everyone my age and younger to plan NOW while you still have your wits about you for a time when you may need care.  Not all nursing homes are decent places where you get good care.  I know, because being a retired nurse, I’ve worked in them.  Many are owned by corporations whose main goal is to make money for their stockholders and the last thing they care about is the staff and the residents.  A place which is not adequately staffed cannot provide good care.  The nurses and aides may be the best and most caring people in the world, but there’s only so much one person can do.  So start looking and planning before it’s too late so that YOU decide how you’ll spend your retirement years especially if you’ll need assisted or skilled care.  One never knows if or when an untoward incident may occur and then it will be too late.

    • Sbarnes16

      “Many are owned by corporations whose main goal is to make money for
      their stockholders and the last thing they care about is the staff and
      the residents. ”

      I think these type of nursing homes should be better regulated by the states that they are in. Weak state nursing home regulations contribute to this problem.

      “So start looking and planning before it’s too late”

      Even if you plan now, that doesn’t mean the facilities that you choose will still have the same quality of care years from now. Which is why ALL nursing homes need better state regulations.

  • Mark S.

    My son is an only child.  After what I went through caring for my parents over a five year period in the late 1990s, I made up my mind that I will not put him through that.  I was there for them every step of the way and went through hell, although I didn’t complain about it and did what I had to do.  After that, I vowed to myself that the last day of my life was going to be the day after I was diagnosed with dementia, should that ever happen.  It will be instantaneous and completely painless.  I already own the means and know how to use it.  It will be difficult for some to fathom, but it’s my life and my right.  More than a decade after what I went through with my parents, I am still living with the emotional aftereffects.  I will not do that to my kid.  The moment I am told I have a degenerative disease with no hope, I am leaving.  Considering what this hellhole of a country is turning into, I’d say I’m getting the better deal.  Soon, it will not be worth living in anyway.

    • Terrybrewster

      And your son’s attitude about this?   Have you arranged for counselling for him and others, to deal with your choice? 
          I am not saying I disagree with your choice, just want you to consider the effects.

  • Mark S.

    The mods on this board are total cowards.  Can’t handle the truth.

  • Mark S.

    Cowards.

  • Britsrus_745

    I was delighted to have this program bring attention to the demanding role of being a caregiver. However, I was also dismayed that yet once again, no mention of the role played by spouses, not even by an AARP representative! I am 78 taking care of my 80 year old husband since his diagnosis of Parkinson’s Disease in 1985.  Our 3 children do what they can long distance from their respective locations around the country.  We have the help of some local resources, nevertheless the burden falls on me. Though the responsibilities are the same, the personal dynamics  differ for spouses, the relationship is forever changed, and engagement in social activities becomes almost non-existant.  I worry about the future for my children  as i age and am thinking through options.  Ivy F 

  • Kate

    We as a society, need to take a good hard look at what kind of cut-off there should be for open heart surgeries or transplants. We creating a whole batch of elderly who have good organs but whose minds are completely failing—to the point where they have to be placed in nursing homes. No one wants to talk about this but it needs to be addressed. We need to stop thinking “quantity” and think about “quality” of life.

  • Paul England

    I’ve been taking care of my elderly mother for the past seven years and she recently had to enter a nursing home after falling and breaking her pelvis. I have been paying out of my pocket for most of her care, not to mention the countless hours I spend doing things for her. She suffers from advanced dementia, but is otherwise healthy. I was shocked to find out the cost of assisted living for someone like her – it ranges from about $45,000 to $75,000 a year. I’ve spent the last month going to the nursing home for visits – what a huge eye-opener that is – I recommend it for everyone. The people who work there do a great job, but it is basically a dumping ground for many people who exist in a netherworld – people with such advanced dementia and physical maladies that leave them in a vegetative state. I don’t know the exact costs, but I am sure it is in the $500 billion range that the government pays (Social Security and Medicare) each year for their care. Meanwhile, we have millions of people who go without health insurance and medical care because it is so expensive. This issue is a conversation we need to have as a country – how can we deny someone vital health care due to cost and pour billions into caring for the living dead? I love my mom very much – but once she is “gone” completely from a mental standpoint and can’t recognize me or anyone else, I would want the choice to end her life humanely. We treat our pets with more respect.

  • Kim

    Dr. Teel’s  ”Maine Approach” is  the way to go. His company Full Circle America uses modern technology with old fashion neighborliness to take care of elders in a community at a fraction of the cost. Check out http://www.FullCircleAmerica.com 

  • Alone2222

    I am an unemployed person who have a 91 yrs old mother to look after,my Cobra health insurance just ran out on me.I can’t look for work while I am alone looking after my mom.I lost my woman when I lost my job in the past ,seven years ago. Again I got laidoff in 2010. My mother can’t be able to do anything like she did in the past. I try to apply for MassHealth for myself and my mom, who don’t have dental insurance. I got a called,I answer back from an id caller number and leave a message. I did’t get a call for two days.I don’t understand this,I was trying to get a affordable health insurance while I am looking after my mom.I am not collecting unemployment anymore and no income  coming to me but I seem to worry about my saving and feel scare what going to happen to me in the future weather am I going have a family or not because of all the laidoffs in the life.

  • Trifon

    Very interesting and thanks for the information. I think this information is very useful. I want to share with you this information:
    DEMENTIA AND ALZHEIMERS – MY STORY – JOHN DU PREEZ
    When I received confirmation that I have in fact without doubt fallen victim to Alzheimer ’s Disease I was devastated although I had suspected it for quite a while. I was quite knowledgeable about Alzheimer’s disease as a result of my involvement as co-owner of a Home for the Age and elder care was one of my specialties. Some time before that I wrote a Guide Book on Alzheimer’s Disease, which was directed at caregivers and relatives of Alzheimer’s sufferers. I decided that I will fight the sickness, instead of the sickness causing a declining of my brain and ultimately a slow death sentence and being in elder care.

  • Trifon

    Very interesting and thanks for the information. I think this information is very useful. I want to share with you this information:
    DEMENTIA AND ALZHEIMERS – MY STORY – JOHN DU PREEZ
    When I received confirmation that I have in fact without doubt fallen victim to Alzheimer ’s Disease I was devastated although I had suspected it for quite a while. I was quite knowledgeable about Alzheimer’s disease as a result of my involvement as co-owner of a Home for the Age and elder care was one of my specialties. Some time before that I wrote a Guide Book on Alzheimer’s Disease, which was directed at caregivers and relatives of Alzheimer’s sufferers. I decided that I will fight the sickness, instead of the sickness causing a declining of my brain and ultimately a slow death sentence and being in elder care.

  • Pingback: The Many Costs Of Elder Care | Aging In Place | Options LLC - Online Magazine for Baby Boomers and Seniors

ONPOINT
TODAY
Apr 23, 2014
In this Thursday, Dec. 20, 2012, file photo, Chet Kanojia, founder and CEO of Aereo, Inc., shows a tablet displaying his company's technology, in New York. Aereo is one of several startups created to deliver traditional media over the Internet without licensing agreements. (AP)

The Supreme Court looks at Aereo, the little startup that could cut your cable cord and up-end TV as we’ve known it. We look at the battle. Plus: a state ban on affirmative action in college admissions is upheld. We’ll examine the implications.

Apr 23, 2014
Attendees of the 2013 Argentina International Coaching Federation meet for networking and coaching training. (ICF)

The booming business of life coaches. Everybody seems to have one these days. Therapists are feeling the pinch. We look at the life coach craze.

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Apr 22, 2014
This undated handout photo, taken in 2001, provided by the Museum of the Rockies shows a bronze cast of the Tyrannosaurus rex skeleton known as the Wankel T.rex, in front of the Museum of the Rockies at Montana State University in Bozeman, Mont. (AP)

As a new Tyrannosaurus Rex arrives at the Smithsonian, we’ll look at its home – pre-historic Montana – and the age when dinosaurs ruled the Earth.

 
Apr 22, 2014
Security forces inspect the site of a suicide attack in the town of Suwayrah, 25 miles (40 kilometers) south of Baghdad, Iraq, Monday, April 21, 2014. Suicide bombings and other attacks across Iraq killed and wounded dozens on Monday, officials said, the latest in an uptick in violence as the country counts down to crucial parliament elections later this month. (AP)

We look at Iraq now, two years after Americans boots marched out. New elections next week, and the country on the verge of all-out civil war.

On Point Blog
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The Week In Seven Soundbites: April 18, 2014
Friday, Apr 18, 2014

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Some Tools And Tricks For College Financial Aid
Thursday, Apr 17, 2014

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