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Post Magazine: The Growing Need for Home-Care Aides

Classie Morant, 104, swore that as long as she had strength, she would care for her bedridden sister, Rozzie Laney, 92. For more than 20 years, she has kept that promise.

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Paula Span and Marla Lahat
Writer; Executive director of Home Care Partners
Monday, May 11, 2009; 12:00 PM

America is increasingly relying on home-care aides to keep the elderly out of nursing homes. Yet we barely pay them a living wage.

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Paula Span explored the work of a home-care aide in her Post Magazine cover story, "Marilyn Daniel's Reward." Span is a contributing writer for the Magazine and author of "When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions," to be published in June by Grand Central Publishing.

Span and Marla Lahat, executive director of Home Care Partners, were online Monday, May 11 to take questions from readers.

The transcript is below.

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Paula Span: Greetings, everyone and thanks for joining us. Marla Lahat, executive director of Home Care Partners, a venerable nonprofit home care agency in DC, is here as well to answer questions about finding home care for elderly relatives. Let's begin.

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Washington, D.C.: I was floored by the story in the photo gallery about the 104-year-old caring for her 92-year-old sister. A sad and beautiful story of devotion.

Paula Span: Wasn't that a beautiful thing? Carol Guzy, who took the photos, has won three Pulitzer prizes. And the other producers who supplied the sound and music and editing also did a terrific job.

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Boston, Mass.: Marilyn Daniel's transportation issues seem like a huge hurdle. Is this a common issue among home health aides?

Marla Lahat: Transportation is always an issue. Many home care workers have cars but in urban areas, parking can be an issue. In suburban or rural areas, a car is almost a necessity.

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Silver Spring, MD: Home health aides are unsung heroes! One thing I didn't see in your article- HHAs also allow younger family members to keep working to support the family rather than losing an income to care for a loved one. Thanks to HHA services, my mother has been able to keep working and my grandmother is able to remain in the home she loves.

Paula Span: Really. Families still shoulder the greatest amount of care for elderly relatives, and there's been a fair amount of research on how hard it is for them to hold onto their jobs at the same time. Eldercare is demanding, it's expensive, it can damage a caregiver's own health. So having some paid help allows family members to keep working, to take the occasional breather, to stay on the job .

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Madison, Wisconsin: What a touching article. Low pay and high turnover for caregivers for the elderly has bothered me since I was a seventeen-year-old nurse's aide. It seems that home care is an obvious cost saving alternative that is hampered both by rules and by poor pay and benefits for the workers. Are there any legislative initiatives to allow home care benefits in place of nursing home care and improve pay, benefits, screening, training, and professional development of the caregivers?

Marla Lahat: Legislation is determined by each state. Almost all states have Medicaid waiver programs that allow individuals who qualify for home care to remain in their homes with extensive home care assistance. As for the workers themselves, many states have living wage regulations but home care workers are sometimes exempt. Most states do require background checks for home care workers.

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Alexandria, Va.: I am really baffled by this country and how everything works. Bank and Wall Street top dogs make how much while the people who actually work to run this country and provide for the people in it; in home health aids included are so underpaid and work the hardest.

It's nuts.

Paula Span: The Forbes Magazine annual list of the worst-paid jobs in America always includes home care aides. Parking lot attendants make more. This does seem irrational, doesn't it? And when we Boomers need help to stay in our homes, how are we going to find enough aides to care for us -- and much bigger age cohort -- if they make so little they're eligible for food stamps?

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Tina in Falls Church: A valuable local resource for elder care services is: Guide to Retirement Living magazine. The magazine is distributed to local care managers, private and public agencies. They have a searchable web site as well. http://www.retirement-living.com/I am a care manager and give this publication to many families looking for care ideas.

Paula Span: Good to know, thanks.

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Virginia: What can I do if my 90+ year old relative does NOT want any help, even though we think she needs it? Money would not be a problem, she just is very independent and wants to do everything herself (of course, that's no longer possible).

Marla Lahat: This is a very common issue. One approach is to suggest that YOU would feel better if you knew that she had some help...it would give you peace of mind while you were working, etc. to know that she has someone she can depend on. Another possibility is to start slowly with less intrusive types of care such as housekeeping or laundry or shopping. Hopefully once your aunt trusts the worker, she may allow other types of help such as personal care assistance.

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Arlington, Va.: Do you have any update on Classie? I was touched by her story.

Marla Lahat: Ms. Morant is declining but she is determined to remain in her home. The family is considering some extra assistance for her and currently have a relative staying with her at night. Ms. Daniel continues to see her regularly.

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Fairfax, Va.: What is the difference between a home-care aide and, say, a nurse? Do they have the same training? Are the terms interchangeable?

Marla Lahat: Nurses usually refer to licensed professionals..either licensed practical nurses or registered nurses. Home care aides are considered paraprofessionals...although they may be certified, their training does not allow them to do tasks that a licensed professional must do such as medication administration.

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Washington, D.C.: My parents are still healthy and active, but with family history of some diseases, it's somewhat likely that they will need care somewhere down the line. Are there any steps they or I can take now to prepare for that?

Marla Lahat: You can certainly talk to your parents and explore options with them in their area. See how your parents feel about having someone come into their home and whether any of their friends/neighbors have used a particular agency or have this type of experience. Since they don't yet need it, they are in a good position to objectively consider all the options.

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Annandale, Virginia: I thought this was a wonderful article. As an owner of a non-medical home care company, I would like future articles to elaborate on the cons of hiring a caregiver in the "gray market."

For example, worker's comp, social security taxes, fill in's when the caregiver is sick, training, etc.

Great article, Ms. Span!

Paula Span: There are disadvantages, no question. Remember the gray market aide named Barbara, whom I quoted in the story? I called a few days ago to let her know it was about to be published -- and the phone number was no longer operable. I called the person who had initially put me in touch with Barbara -- she too could not contact this person by either phone or mail. She seems to have disappeared. And since she wasn't working through an agency, no way to find her. Her elderly clients may have been left in the lurch.

And it's true that when you hire without an agency, you don't have the ability to call up and say, "My aide is sick. Or her car won't start. So please send someone else." You don't have the assurance that your gray market aide has been screened and trained and had a criminal background check or maybe a drug test.

But agencies often present problems, too. They often require that you hire someone for four hours, even if all you need is two hours' help. They charge more, but the aides make less, than if you paid them directly. And in New York State, Attorney General Andrew Cuomo has brought multiple indictments against agencies who *sold* home care certification to people who had no training and all, and who billed Medicaid for hours that were never worked.

Not true of Home Care Partners, I hasten to add. But sadly, there's no substitute for really doing your own interviewing and careful monitoring of an aide, however she was hired. There are good and bad agencies, and good and bad workers through the gray market.

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Atlanta, GA: I applaud you on this beautiful story - my hope is that it will help bring much needed attention to the tremendous IMPORTANT job that these loving caregivers do... and the need to pay them a decent wage, benefits, training... We need to take care of the caregivers!

Paula Span: Thanks. And, agreed.

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Philadelphia, Pa.: How do people pay for elderly home care? I know it costs less than hospitalization or institutionalized care, but in this day and age, when it is hard to get or keep health insurance, how does one qualify for home care if one doesn't have insurance? (Or they don't receive it?)

Marla Lahat: Other than long term care insurance, there are a few ways to pay for home care. Following a hospitalization when a person has a skilled nursing need, they may qualify for very limited home care services under Medicare. Low income individuals may qualify for home care through Medicaid. Many areas have Medicaid waiver programs that have more generous income qualifications. Some areas have programs similar to Home Care Partners' programs in which local governments pay for the service and clients contribute on a sliding scale. Finally, many people pay privately for their service, either by employing someone on their own or using an agency service.

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Los Angeles, Calif.: When is a nursing home the right choice, and when is a home health aide a better choice?

Marla Lahat: This is a difficult question and depends on many factors. Most people would prefer to remain in their homes and if enough support can be pieced together, this is usually the preferable option. But safety is an important consideration. If the individual is wandering, turning on the stove, unable to take care of their needs in any way, there is little family support AND it if it is not possible to provide enough home care hours to cover most of these needs, nursing home placement may be a better choice. In the case of Ms. Laney, IF her sister hadn't been there AND there was no other type of support, she would have had no choice but to be placed in a nursing home.

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Florida chick: My heart goes out to the outgoing fellow who is reduced to spending most of his time alone in his son's basement. His "insistence" that this is his preference offers a look at the inertia, misinformation and just sheer cussedness that trap some elders in place. Depicting nursing homes as hellholes and assisted living as dorms for the rich, vs. the sainted underpaid home health aides who comes like angels (food stamps in purse) is a preposterous conjecture. All elders "insist" they don't want to move, just as most 4 year olds vehemently oppose preschool - until they try it. My mom's health improved markedly in assisted living, with regular meals and meds, and she bloomed with bridge, happy hour and lunch outings. She lived four years, and even had a beau for the last two. BTW - pls. run an intervention on the aide who has no pension and whose modest wages are not reported to the SSA. She will be destitute in her own elder years, a travesty.

Paula Span: Inertia, misinformation and sheer cussedness, probably true. But also, fear. The 20-year-effort at nursing home reform has had the unfortunate side effect of making the elderly and their families believe that every institution is a horrible place. But there are good assisted living facilities, the large ones you see on every suburban highway and also smaller ones in neighborhoods, with a few residents. And there are good nursing homes (though not nearly enough). The idea that home is always best for everyone is fallacious, I agree. Mr. Alston might well have a better quality of life in a congregate setting; he's pretty isolated now except for his son and his TV and his daily visits from Ms. Daniel.

But you know, however much we can see the similarities, our parents are not four-year-olds. We are not the boss of them. And even when we think they're making unwise decisions, we have to respect those decisions -- unless we're talking about people with serious dementia whose judgment and memory is impaired. Not that we can't keep trying to persuade, or taking them to visit residences.

It's a process.

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New York, NY : Paula thank you for such an accurate and beautifully written article. Every American needs to focus on the urgent need of supporting this workforce if each of us hopes to find qualified, caring direct care workers to care for us when we need it.

Leonila Vega, Esq., Direct Care Alliance

Paula Span: Thanks, I appreciate it. This is the director of an advocacy group that's trying to help workers -- home care workers and nursing home and assisted living aides -- organize and lobby for better training, better wages and benefits, etc.

Another route that's worked in some places is unionization. Very hard to organize home care aides because they have no central workplace -- they're out in people's houses. But in some states where home aides work for publically-funded programs, they have formed unions and wages have gone up. California, Michigan -- the latest is Massachusetts.

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Alexandria,VA: I loved this story. My parents have a home health care worker who is not as good and not trustworthy, she always leaves behind a mess and barely does the job she is suppose to do. Is there an organization or website that rates Home Health care agencies?I am curious about the agency ours works for. She seems to do little of what she has been asked to do and never shows up on time.

Marla Lahat: I don't know of a central source that rates home care agencies but you might try contacting the Alexandria Agency on Aging (or Fairfax AAA if you are in Fairfax. If you are not pleased with the service you are receiving, you should first try to work through the agency, contacting the case manager (if there is one) or the supervisor, or even the director of the agency. Perhaps there is an issue with the particular worker and the agency may be able to address the issue or replace the worker. If you can not resolve the problem and you are paying privately for the service, you may wish to consider another agency.

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Tina in Falls Church: Though noted in the article, the issue of worker injury is huge. I know several nurses that once worked in nursing homes/home health and they have left that particular area of practice due to injuries to their backs. Home health providers are at a higher risk since they often have to improvise when lifting folks.

Paula Span: Actually, the research shows that nursing home aides have higher injury rates than home aides, probably because they have to do so much more lifting and positioning. A nursing home aide might have many patients who can't transfer on their own. At home, aides have less help and less technology, like lifts, but they also have fewer patients.

That said, this whole category of direct care workers does, indeed, have sky-high injury rates. Orthopedic, mostly. But a recent study from the University of Maryland shows the possibility of blood-borne diseases from handling needles and other "sharps" or from handling bedding and clothing with blood. Home care aides don't give injections, but they can still be exposed to body fluids and they don't get sufficient training in how to protect themselves.

Marilyn Daniel always carries a box of protective gloves with her. It's a standard infection-control procedure. But probably not everyone does -- including gray market aides, who would have to buy them themselves. So they're at risk for infection and of course, their elderly clients could be, too.

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Gaithersburg, MD: The home care aid in the article is in her 60's. Does anyone know the average age of home care aids? What is the average age of aids at Home Care Partners?

Marla Lahat: Although I don't have exact statistics, I believe that our average age at Home Care Partners is about 55. But of course, that is an average...we have workers who are considerably older (really!) and workers who are considerably younger. Interestingly, many of our clients greatly prefer the older workers..they see them as more mature and trustworthy.

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Washington DC: Terrific article! The article shined a light on work that is often overlooked. People like Ms. Daniel are real heroes. The often dangerous and debilitating work they do make it possible for many of us to carry on with our careers, with our lives in other cities and with work of raising our own children. Even with Ms. Laney's attentive and loving relatives, most days of the week, it Ms. Daniels the homecare worker who provided the hands on care for Laney.

It is unfortunate that workers who are barely able to get by doing the work they love and the work we need them to do. Not only are their wages low, employers have fought efforts to have them covered by the most basic labor laws that protect the rest of us. Home care may provide a better quality of life than a nursing home for most people receiving care, but at whose expense?

From a policy point of view, one thing that struck me is how disconnected Ms. Daniels is from the rest of the healthcare system her clients interact with regularly. Caregivers often have more daily contact with clients than anyone else. Caregivers see when clients lose appetite, lose weight, change moods, lose the ability to carry out activities of daily living. Yet there is no way to provide that information to the client's doctor in real time. The result is that there is little coordination of care and the health care system loses the ability to interact early and quickly to forestall further decline. Even if Ms. Laney were on Medicaid - even if Ms. Laney's care was covered by a single payer - there would have been no greater coordination of care. As we think about how to use health care reform to achieve greater coordination of care, we should keep people like Ms. Laney in mind.

-- Lee Goldberg

Paula Span: Good point.

Home care aides are not even covered by the federal Fair Labor Standards Act, so they don't get the federal minimum wage (though many states have their own minimums) and they don't get overtime. There are hopes that this may change with the Obama health care reforms.

(Live-in aides would still be exempt from overtime provisions, however. That would be prohibitively expensive for almost everyone.)

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NOVA: Isn't part of the problem the exploitive companies that are paying minimum wage and doing the least they can do for the providers while collecting triple that from the insurers or the elderly. No question mark it is no question in my view.

Marla Lahat: You are absolutely right...there are good companies and bad companies. It's important to explore the training, supervision and support the company gives to their workers. Also, some companies are accredited by standard setting organizations such as the Joint Commission (JCAHO). This ensures that the agency is complying with standards that often go above and beyond what states require.

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Chicago: My siblings and I are just starting to look for a Care Giver for my Mother. We can hire a 'grey market' Care Giver privately for less money than we would pay an agency for a Care Giver. But we worry about backup care if our Care Giver gets sick or needs timeoff, as well as liability if someone gets hurt.

Do you have any advice or helpful hints?

Marla Lahat: This is definitely an issue when you hire someone privately. It's helpful to have a back-up system in place..either a second paid caregiver, a neighbor or relative who might be able to help out in a pinch. An agency provides more assurance that there will be someone available to provide back-up assistance but even with an agency, it's helpful for families to have their own system of back-up and be prepared for the unexpected.

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DuBois. Pa.: Are there enough paraprofessionals and even professionals working in the home care field to meet demand? As the number of elderly is expected to increase sharply in the next few years, will there be enough in meet demand? Also, will there be enough able to work in rural areas?

Paula Span: At this precise moment, experts tell me there are enough home aides overall, though spot shortages in some locations. (Recessions may actually help increase the supply of available helpers, because better paid jobs are less available.)

But in the future no, economists and health analysts predict a significant labor shortage. Partly because home care workers (and aides in nursing homes and assisted living, too) leave their jobs so often. Enormous turnover. Agencies are hiring all the time.

And partly because the number of elderly people who will need such help is going to jump. People are living longer, but with chronic diseases, so there will be more clients. And the number of boomers is going to strain the system. Something has to change.

In rural areas, one real problem is transportation.

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DC: Clearly, the wages for these crucial home health aides are far too low. But the families paying for the services must be very pressed to pay at the current cost. where is the happy medium? And also, do you know if countries with state-sponsored health system supply these services at a lower cost?

Marla Lahat: Each area/state has a different system for providing home care for individuals who can not afford to pay privately. Medicaid (federal plus state dollars) pays for home care for low income individuals. Many states have gap filling services such as the service provided in D.C. by Home Care Partners under a grant from the D.C. Office on Aging. These services are available to clients who don't qualify for Medicaid but can't afford the full cost of service. They are asked to make a contribution for their service, on a sliding scale based on income but no one is denied service if they are unable to pay. However, the amount of service provided is limited and some families need to supplement the hours with family members or private duty care, as you saw in the story about Ms Morant and Ms. Laney.

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Washington 20036: Just another comment on the unsung angels who work as home health aides. My grandmother spent a decade declining from Alzheimer's and had three dedicated health aides. Two had begun as part-time housekeepers, but built such a rapor that the family asked if they would be willing to occasionally stay overnight and assist with personal care (with a substantial raise, of course). All three ladies were so warm, caring and devoted to my grandmother's well being, even when she was stubborn and rude. All three attended her funeral when she passed away last year, and I will miss their presence and friendship almost as much as I miss my grandmother. These ladies deserve more than minimum wage, not to mention unending gratitude for taking on responsibilities many of us would rather avoid.

Paula Span: That, to my mind, is a happy ending: familiar and trusted aides who fill a role somewhere between hired help and family. I'm glad your grandmother, and your family, was that lucky.

Families feel guilty sometimes that they don't do all the eldercare themselves. We have this fuzzy, nostalgic idea that in times past, families were more caring. That now, we're too selfish or too busy or too something to provide care.

But families still shoulder the bulk of caregiving. And having trusted aides to help allows families to keep working, to safeguard their own health, to keep elders at home.

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Baton Rouge, LA: While I think its great that you are writing about such an overlooked topic, I find it troublesome that your artilce seems so slanted towards hiring caregivers in the gray market. We have used an agency for some time hear for my mother and while there are sometimes challenges and additional costs with an agency, the peace of mind and freedom from liablity has been a signficant burden. We use a company that is a franchised so we feel more comfortable about them doing the background checks and screening.

My mom's neighbor had a caregiver that she paid privatly that was with her for over a year. They are still fighting with her over a hurt back that the caregiver is claiming they are responsible for.

All I'm saying is that there are some crazy people out there and a vulnerable senior is an easy target for someone that has no oversight.

Marla Lahat: You are absolutely right. There are benefits that an agency brings that a private caregiver can not offer. Agencies may offer social work or nursing case management services, criminal background checks, higher levels of training, as well as supervision and scheduling of the direct care workers. They also can respond to complaints and provide substitute workers when the primary worker is absent. People who use the gray market need to be prepared to step in to fill these roles. However, for those who have the ability to monitor their service, advocate for themselves, and have back-up help available, hiring someone who is not employed by an agency is a less costly option and may sometimes be beneficial.

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Olney, MD: Can you discuss some of the pros and cons of remaining at home versus assisted living?

Paula Span: Forgive me for saying, it depends. But, it depends.

Most seniors would far rather remain at home, but that is sometimes unsafe. If the home isn't adapted with things like grab bars, shower benches, chair glides for people who can't handle stairs, the senior is at risk for falls, even if there's an aide to help. Also, as with one of the elders in the story, staying at home can be very isolating. Yet for an elder who's living happily with family or who has a network of friends and relatives who stop in and include him in activities, "aging in place" in a safe home may be ideal.

And depending on how many hours of help someone needs, staying at home may be cheaper than AL, where the annual cost was about $3000 a month (and that's a national average, much higher in some cities) for a one-bedroom apartment.

But assisted living does allow for more social interaction, more activities, more monitoring, and some people do thrive in it. One caveat is that people often wait to move into AL until they are quite disabled or debilitated. And then they soon reach the point where AL, which doesn't usually provide much health care, can no longer provide enough help. Average length of stay in assisted living: 27 months.

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Tina again: Hope I'm not overstaying my welcome. I am a care manager and outside of some LT care ins, this service is not covered by ins...folks have to self pay. I have found the need for case managers is rising but the resources to pay for this are shrinking.

Marla Lahat: You are absolutely right...it's not covered by insurance. That's where Medicaid steps in for the lowest income individual and where services that some local governments fund through their Agencies on Aging or Dept. of Human Services can be invaluable. BUT, these services are almost always limited in the number of hours of care provided and may not be sufficient. And with tight budgets, government agencies may be trimming these services further. It's very unfortunate because home care services can be more cost efficient in the long run and certainly the option that most people prefer.

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Denver, Colorado: Though I agree that the caregivers who provide care to the elderly are true angels, I found the article to be extremely narrow and one-dimensional in its focus. We can all talk about how we need to increase the wages, benefits, and training for caregivers. I agree 100 percent. But who do you think will bear the burden of these additinal costs? The consumer without a doubt. Paula's article only talked about the "horrific conditions" of the worker but never delves into how to potentially solve the issue. Unionization for one is not the answer. This will put home care agencies out of business.

Paula Span: Sorry you found it narrow. It was, it's true, written from the perspective of the aide and her clients. And because Home Care Partners accepts contributions on a sliding scale, those clients probably could afford more hours of help than they could if they were paying market rates.

But I agree that if you raise aides salaries and benefits, you may make them too expensive for families that need them. And unions have mostly made inroads where members were public employees; it would be very hard to unionize the dozens of smaller agencies with a few dozen employees that provide a lot of care, even if we thought that was the solution.

Ultimately, we need a more comprehensive form of care for our seniors that incorporates the necessary changes to Medicare and Medicaid AND that provides for better jobs for the aides. I'm hoping some of these smart policy people in the states and in Washington can come up with a better system, not just patchwork and band-aids.

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Florida chick: No sale on "we can't treat elders like four year olds." Of course we can't. But nobody is enthusiastic about something they know nothing about, aged 4 or 84. So show them the options, in a realistic way. Being at home is lonely and my mom was so much happier with peers all day. And we adult kids could visit and enjoy our time, not mash food and wipe her whatever, an indignity she would have hated. That loving son knows his pop deserves better last years than a TV and some chat with an hourly worker, day after day. Hope he puts his foot down. Maybe they could try a place for 6 months, on a short contract. You can always "go home". Dollars to donuts the elder guy will be too busy and content to leave. BTW - I have money saved for old age, and will not end my life on my daughter's family room sofa.

Marla Lahat: I think that each person is different. Although the gentleman in the story enjoyed the company, he also adamantly refuses to take part in group programs such as adult day care that would allow him to be with others during the day and still remain at home with his son. But you are right that many people blossom in social situations and that being lonely can lead to depression and other types of decline.

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xxxxxx

Paula Span: I'm going to put in a shameless plug for my book that will be published June 10 by Grand Central Publishing. It's called "When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions," and it follows the stories of a number of families trying to figure out the best way to care for their elders. More information at http://www.paulaspan.com

Okay, back to questions.

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Washington, DC: I can relate to this wonderful, heart-richen story, as I took care of my grandfather for two-weeks out of every month for five years. (Grandpa passed away last November.) Taking care of loved ones is VERY hard work, let alone doing it at 104 years old. I tell my daughter that when the time comes she should always consider a nursing facility before taking on such a burden, believing that as I get older I will more than likely have a different opinion and want to stay home.

I could not let this day pass without sending blessings to all involved and hope that this is addressed on a much bigger scale. Thanks for the laughs and tears while reading this article!

Paula Span: Thanks. It IS hard work, at any age. There's a lot of quiet heroism involved.

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Anonymous: I once met a nurse that cared for alzheimers patients in a nursing home. what she explained was horrifying. But she had one of those caring personalities that allowed her to do it.

Marla Lahat: You are right...you must have the dedication and personality in order to be able to care for other people. We're fortunate that there are people like Ms. Daniel out there!

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xxxxxx

Paula Span: Thanks so much for joining the conversation. How best to take care of our elderly -- and where, and by whom -- is a question that's only going to become more debated and more crucial in coming years.

To contact Marla Lahat, go to www.homecarepartners.org.

And I'm happy to continue the discussion. You can email me through www.paulaspan.com

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