LTCIC: What are the main fundamental issues of Eldercare?

JOY: There are 14 as I've described them in my book. If I were to prioritize them, there would be three: the top one is money - the cost of care, and that issue is divided into two parts. How much of my own money can I expect to spend and how can I help my parents finance a longer life?

LTCIC: When you say, "help my parents finance a longer life," does that mean you feel that a lot of families don't calculate that in their thinking?

JOY: They don't even think about this until somebody jabs them in the ribs and says hey - wake up! This is going to cost you emotionally, financially and otherwise if you don't begin to deal with it now - so the issue of money is number one.

The issue of housing is number two. Where are these people going to live? Can they bring in resources or do they have to move. This is another inevitable eldercare issue.

And the third one is the issue of paperwork. If you don't talk to people while they are coherent, how are you going to get answers to the things they want, where they keep things, what they own, who they owe, who owes them. . there is this huge laundry list of paperwork that needs to be established while someone can still give us answers to these questions. How about the location of their bank accounts? - We don't have to know what's inside if they are not willing to share that information with us - but that, too, is changing because people are realizing that family members are having to pick up the tab.

LTCIC: So why is it so difficult for families to address these eldercare-planning issues ahead of time, and if you do get an opportunity how would you go about at least addressing those three items?

JOY: Why is it so difficult? That's a loaded question. Issues of elder care force us all to deal with our mortality. We think our parents are going to live forever and consequently so are we. Many times people do not bring this up is because they don't really have an understanding of what the issues are. They don't know that they can plan ahead - so why bring anything up?

LTCIC: It's almost like one of the hardest topics for people when dealing with children is talking about the birds and the bees; or when you're talking to a teenager you ask them not to drive the car too fast, or drink and drive, but they don think anything is going to happen to them. Yet talking with the elderly seems to be an even harder issue to deal with.

JOY: Right. They don't think anything is going to happen - no matter how much evidence is around them. The other thing is that they are not really given the skills or told what to say. I'm real popular at a cocktail party because when people ask me what I do and I say the words "aging parents" you see them start to squiggle and wiggle - and then they say - oh - I have two of those. And it's like all of a sudden the light bulb goes off - you can just see it on their faces.

LTCIC: So how would somebody approach the three subjects that you're talking about? If you had a way to educate them, what would you do?

JOY: I have a whole program dealing with the issues of communicating with our elderly loved ones because these topics are so emotionally explosive. Everything in the approach to communicating with these people depends on the relationship that we have with them. Family members typically already have the skills - they just need to arrange them. For instance, when we were bringing up our children we communicated with them in certain ways. As they began to be more responsible we changed the way that we spoke with them. The same occurs when we begin to talk to our elderly loves ones. The fact that we're the kid and they're the parent never changes, so we can't go in there like a locomotive and begin to tell them what to do. We begin the process of talking to them by asking a series of questions that help create a safe environment for them to begin to explore their own issues. We ask them questions like have you given any thought as to what you'd do if you couldn't live here anymore? Have you given any thought as to what you'd like to do to make sure you could live here? One other approach is to tear out an article from a newspaper or magazine and put a little personal note on it that says, "I read this and thought it was interesting. I'd like to know what you think about it."

LTCIC: I remember reading in one of the articles that you did on the Women's Connect Website where you mentioned a good way to begin talking to parents about eldercare is to tell them that you were starting to plan for your own will and future eldercare, and ask them what kind of ideas they have and if they could give you some advice.

JOY: Yes - asking for advice is a wonderful way to get the conversation started. What better way is there to show respect? We don't have to take their advice, but it is a way to open up the conversation and it creates a safe place for them. The minute you say to your parents, "look, your driving is horrible - you've got to stop doing this," they'll butt up against you because they're trying to protect their independence (and by all means I would, too.) So put yourself in their shoes. I have a laundry list that I use in a two-hour program that's just on the values of communicating in a certain way with the elderly. At the same time, we may have to intervene in a little stronger manner if things get too far out of hand.

LTCIC: So if Dad's car is banged up a few times you might want to interfere a little bit?

JOY: You negotiate with him rather than take the care keys away. Otherwise you are going to jeopardize the quality of the relationship.

LTCIC: In your experience, has getting them to stop driving been one of the more difficult things?

JOY: Not really. For them to consider obtaining help is even harder for them to deal with than not being able to drive. We sometimes don't realize this it, but they give a lot of thought with regard to driving. They don't like driving when they're scared anymore than we like them to drive. A lot of them even back off on their driving; i.e., they don't drive at night anymore, or they take certain roads that are familiar to them. If you're listening and paying attention they are often giving us clues that they are looking for alternative ways to get around.

LTCIC: So it's really important to listen and look for clues.

JOY: Yes.

LTCIC: At what point do you think that eldercare is going to surpass childcare in terms of needs in this country, or do you think this is already happening?

JOY: It's already happening, but in the workplace it's still somewhat of an underground issue. Employees who generally don't hear their bosses talking about eldercare have a tendency not to disclose that they have a problem with mom and dad at home. But in a company where there is more support and bosses and managers are talking about it the employees feel that they can freely say that they have to leave early or take care of something for their parents. They talk about it more openly. In companies where I have worked where the employees do not feel safe with eldercare issues they simply tell their bosses that they have childcare problems to deal with instead of telling them the truth.

LTCIC: So "a dirty little secret" is what it's being called.

JOY: Yes, and most employees are pretty sharp. They look around and oftentimes they even have a tendency not to use some of the referral sources available or an EAP - they would rather keep it to themselves. How safe they feel usually depends upon the company's culture and they will react accordingly.

LTCIC: Why do you think they stay away from an EAP?

JOY: They just don't know that it can be a possible resource for them to start thinking about. If they don't stay away, then they have a trust issue of someone finding about it, and they don't want to be pegged as someone who is not promotable or available.

LTCIC: So what's you definition of a good work life employee benefit program?

JOY: One that could actually provide services; i.e., do some of the hands-on work because we're unavailable from 9-5 and can't be in two places at once. A good program will actually be somewhat of a surrogate son or daughter to some extent. The trick is to get parents to accept these outsiders. Flex time is very popular right now; it's kind of like a quasi eldercare program because it does allow an individual to leave for a period of time and then come back to work.

LTCIC: How does an employer really grade the difference between some of these work-life programs?

JOY: Well, we're continuously searching for some kind of measuring tool. I use a survey in my programs that asks the employees who attend to tell us the depth of their issues and how they believe the programs can actually work. To my knowledge there is not a formal survey that is available simply because eldercare is so complex and entails so many issues.

LTCIC: You were saying earlier that a better program is one that offers more of a hands-on surrogate solution. The ones that I know about offer more of a referral list or phone counseling. That may not be as effective as what you're saying.

JOY: Yes - as employees we're going to have to create partnerships. We simply cannot handle eldercare alone. The more successful programs teach employees to make those kinds of people part of their lives, creating extended families for either professional or informal networks of support.

LTCIC: What steps should employers take to help their employees and their extended family members?

JOY: Employers aren't really bound to do anything. However, even the smallest efforts are appreciated by most. I believe that if they are going to do the bare minimum they should make good use of their newsletters and list community resources, which are available and possibly include some articles regarding the issues. While this is not much, it is a step in the right direction as many companies are still refusing to deal with this issue. I offer lots of articles on planning to employers and encourage them to include them in their newsletters. This gives the employees an opportunity to become aware that this is something that may stop them from being productive at work and may prompt them to begin thinking in terms of how they will deal with future eldercare issues.

LTCIC: What about the government? -What kind of role should they be playing?

JOY: The government is out of money. The Older Americans Act is now defunct, and many of the programs that family members have relied on in the past are not going to be available when they turn to them for support. As an example, take the Meals on Wheels program. This is a program where a senior pays a couple of dollars a day, and with the government supplementing the cost volunteers take a hot meal or a sandwich to an elderly person and spends time with them, feeds them if necessary, and go on their way. With the aging population growing, there are now waiting lists for this program. In Chicago, for example, there was a 4-6 month waiting list for the program; Detroit had a 3-month waiting list. When I personally attempted to get Meals on Wheels for my father it was unavailable because there were no volunteers, and he was put on a waiting list. This is very common, and unfortunately employees don't even know it. They are sitting at work and assuming that all the services listed in the brochure lying on their desk that they picked up from the Department on Aging are going to be available when they need them. Needless to say, that is not correct. Almost as soon as the printing of that brochure was completed the information was obsolete. So, what is the solution? The government is trying to do their best, but the American people have a huge responsibility to care for their elderly. I don't believe it's the government's job. They can be our partners in some way - but ultimately the responsibility falls on our shoulders - especially with regard to long-term care.

LTCIC: In your experiences, what have you seen regarding how the need for caregiving affects a family unit?

JOY: My personal experience has been positive simply because we come from an Italian culture of planners. We fully expect and plan for a long life. However, in general, the reactions from potential caregivers are spread all over the spectrum, from flat out "I'm not doing anything" to overdoing it, over involvement, and everything in between. -. I had one woman tell me that her elderly mother's doctor's office called her and said her mother needed help and that she needed to care for her. Her mother had abandoned her when she was five and this was the first time she had seen her in years. What does that tell you? Even people who have had no relationships with their families are being called upon to take care of people who never took care of them. The depth of emotional issues can only be imagined.

LTCIC: I'm sure you know that sometimes families get torn apart taking care of a family member at home.

JOY: Sure - brothers and sisters. . I've seen fights occur while a relative is on the deathbed - you wouldn't believe what I've seen - it's incredible, wild!

LTCIC: And it can also tear up the relationship between a husband and wife if it's parents' -in-law.

JOY: The divorce rate is skyrocketing because of the lack of planning for housing the elderly. One spouse will say "we need to move my mom in here because she has no one to care for her." Why? It is more than like just because of a lack of planning. Now you have this new family member coming in your household. You can imagine how this not only disrupts the relationships between the marriage partners but the rest of the family. - It is a very difficult situation; one which sadly could have been avoided with some foresight. It's ok to have family members move in (in my culture we do it all the time); but we have plans in place for that. If someone is caught off guard and the elderly person has to move in it's very difficult emotionally and in many other ways.

LTCIC: Let's talk about Assisted Living Facilities and Congregate Living Facilities. What role do you think they are going to play in the future? Do you think they are going to expand? Do you think it is going to be more heartwarming to many? More acceptable?

JOY: Yes, I do. We just have to get the word out that they exist. The first thing that comes to the elderly person's mind when you talk about housing options is a nursing home. They have no idea that assisted living exists and there are facilities where they can continue to live with dignity; or that there are ways for them to have assistance brought into their homes. They need to be educated and that's our job - to get the word out as best we can.

LTCIC: What do you think the culture difference is between the Assisted Living Facility and the Nursing Home?

JOY: Due to the manner in which insurance is structured, nursing homes are currently set up as health care facilities. Do you have a chronic illness, are you on your deathbed; are you on your way out? So, too, the housing and care options have run parallel to these new definitions. Our nursing homes are becoming more and more structured for specifically ill people and even those are branching into care for people with Alzheimer's and dementia - they are not dementia patients but rather dementia residents.

LTCIC: Let's talk about insurance - you know long-term care insurance is becoming more and more important resulting in many more people buying it today. When do you think is a good time for someone to purchase Long-Term Care insurance?