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Office of the Press Secretary

For Immediate Release March 2, 1994
                       REMARKS BY THE PRESIDENT

The Oval Office

10:36 A.M. EST

THE PRESIDENT: I want to thank you all for joining me today and for setting aside some time so that we can speak together and that together we can speak to the country about the long-term care problems in America. As we just heard, we have people from California to New York on the line; people for whom long-term care is not just a health reform issue, but a real job.

One of the most important things that our health care plan is attempting to do is to make your job easier by creating a new home- and community-based long-term care program that gives people in need of assistance new choices, and gives more options for long-term care, doesn't automatically push people into nursing homes to get some public assistance, and encourages people who are trying to take care of their family members to do it by giving them some help to do it.

If this portion of the plan passes, for the first time we'll have a nationwide program that will give Americans, regardless of their income, some long-term care services tailored to their needs and provided in the place that they want to be most, in their own homes.

But the main purpose of this conversation today is not for me to talk, but to hear from you -- the people who are real experts -- to understand how the approach we're taking here in Washington will affect homes and communities like yours around the country. I think it's very important that people in the Congress and the decision-makers understand just how many Americans there are who are in the situation that you're in.

And so, let's start with Eve Lefkowitz in Langhorne, Pennsylvania. Eve is a visiting nurse who provides care for both her parents. Eve, why don't you talk to us a little bit about --

Q Good morning, Mr. President. The situation here is my mother is 70 years old and she was diagnosed with lung cancer seven years ago, at which time she did receive some surgery and was basically told that she was pretty much cancer-free. She was rediagnosed with cancer two years ago -- the same type of cancer.

At this point, she needs help with bathing, dressing, meal preparation; she's on continuous oxygen, and also she needs help with ambulation because she forgets about the oxygen tubing and gets wrapped up in it and trips on it.

My father is 71 years old. He is mentally ill with severe depression. He goes to an adult daycare program four hours a day, five days a week, and at this program he receives group and individual therapy. For him, simple tasks like getting out of bed, are very, very difficult.

In the last two years, my husband and I have seen my parents decline in health, and we saw that they were becoming isolated and their sense of self-worth was rapidly plummeting. My husband is self-employed. I work part-time for the Visiting Nurses Association of Greater Philadelphia as a visiting nurse, like you said. And we have two young children, ages 3 and 6. My parents basically needed to be with people who needed them, and we felt that we could benefit greatly from being around the children -- that they could benefit from being around the children and the children also would certainly benefit from having their grandparents be a part of their daily lives.

Recent periods of confusion and disorientation in my mother's life have forced us to hire a live-in care person, which is astronomical in cost. Also in addition to that, we have medical tests and doctors visits and medication that are just completing draining their modest savings, to the point where there just won't be enough money in a very short period of time for us to continue this type of care.

And that's pretty much what's going on here.

THE PRESIDENT: Thanks, Eve. Before I respond, let me say -- can all of you still hear me?

Q Yes.

THE PRESIDENT: One of you has been talking to somebody else while Eve was talking. You may not be able to hear her talk, but we can hear you. So if you talk while someone else is talking, then we won't be able to hear the person who is talking. So please be careful about that.

Let me say, the situation that you have outlined is one that a lot of American families are struggling with. They want to keep their parents in the home. They want to keep them around the grandkids. But they have huge out-of-pocket costs. They know if the parents go to a nursing home, especially if they just spend their resources and go to a nursing home, they can get some help.

Now, under our plan, your parents would be able to stay in your home and get many of the services that they now have to pay for themselves, including adult day care, some help with home health services and medications. People have to make a contribution alright based on their ability to pay. So it's not free for everybody regardless of their income, but there would be a support program. In almost every case, this would be cheaper for the government that providing nursing home care. But it will give people who have certain health problems and disabilities much greater choices about how and where they get the care. And it would enable families like you, yours, that are really close-knit where you've tried to keep your family together to be able to do that and succeed.

So we are going to do our best to help you. And I must say, I really admire you for doing this.

Q Thank you.

THE PRESIDENT: Beth and James Crampton, are you all there from Omaha?

Q Yes, we're here.

THE PRESIDENT: Beth is a 23-year-old recent college graduate who, along with her father, takes care of her mother. Why don't you talk a little about your situation?

Q Okay. Ten years ago when my mother was diagnosed with Alzheimer's disease, I had no idea what to expect. I was only 12 years old. As I grew up, my mother slowly slipped away. She gradually lost the ability to care for herself, became more and more confused. And today, she can only speak a few words at most.

It was a challenge to care for her at home, but my father decided early on that we would do that. Her own frustration toward her illness and a fiery temper made her behavior unpredictable and sometimes volatile. Early on we tried a day care center for her, but before a few weeks were up we had to remove her from that program because they were simply unable to handle her erratic behavior. Later we tried to hire someone to come in to the home, but her bizarre mood swings and actions made them frightened and they eventually were unable to handle it as well. And it became clear we were on our own.

So my father retired early from his job as a professor at Creighton University and took a part-time job there instead. And I gave up some of the carefree college lifestyle that my friends all took for granted. But, really, we have been lucky financially and emotionally. My tuition was paid as a benefit from his job, and we have had some help from a volunteer program here in Omaha. This program allowed us the luxury of having my dad attend my graduation last December. These are the kind of things that make the difference -- it's that support that matters most to us.

But most importantly, we're together. We shudder to imagine what would have happened or what this would have been like if either of us were alone. To us, in the big picture, one thing is clear -- my mother may have changed a lot in the last -- but her smile will still light up a room. And every night that we sit down to dinner as a family, we offer her community and security and a sense of belonging. In short, we offer her something no other care could give -- a home. So just having her here makes our sacrifices seem small. And I thank you for this opportunity.

THE PRESIDENT: Let me ask you something. You said your father was able to attend your graduation. Did someone come in and care for your mother during that time?

Q We did. The senior companion program here in Omaha has allowed us to have a volunteer who comes in and is familiar with my mother and can help care for her. So she made special plans and came in that morning so that he could come; otherwise there would have been no way he would have seen that graduation.

THE PRESIDENT: I really identify with this. I've had an uncle and an aunt with Alzheimer's and I've seen what it can do to a family. And I admire you so much for staying committed -- you and your father -- to taking care of your mother.

One of the things that I think is important to point out that you have just illustrated with the story that you had, particularly for families where maybe there's only one person who is caring for an Alzheimer's victim -- is that there needs to be some respite care for family care-givers, so people like you and your father can at least take a break and know that you can have a lot of confidence in people who are with your mother. And our plan would provide some help to do that, would make it possible for people who are carrying for family members with Alzheimer's to have people come in on a regular basis, like the person who came in for you, all across the country to provide respite care, so that you would never have to fear at least having some basic normalcy in your life that you were hurting your mother.

There are people, as you know, all across the country who are doing this now, and Alzheimer's is an issue we have to

confront head on in other ways. We also, in our health care plan, invest more than $20 billion more into preventing and combatting diseases that disable older Americans including Alzheimer's, along with breast cancer and heart disease.

So I hope that all these things will be helpful to you. And again I want to thank you for the example you've set. I really appreciate it.

Is Goldia Kendall there?

Q Yes, I'm here.

THE PRESIDENT: From Jonesboro?

Q Yes.

THE PRESIDENT: My home state -- well, it's nice to hear your voice.

Q It's good to hear you, too.

THE PRESIDENT: Are you really 85 years old?

Q I'm 85, I'll soon be 86. My husband is 89.

THE PRESIDENT: And she's worked all her life as a cook and a nurse, and her husband is a retired factory worker and a carpenter. And he had a stroke a few years ago.

Why don't you tell us about your situation, Ms. Kendall?

Q Well, he had Alzheimer's and then he had a stroke. And he's bed-fast; he's been bed-fast for five and a half years. I've had him in a nursing home a few times just a few weeks at a time, but, Mr. President, the nursing home don't fit him. And anyway, I've got him home, and I take care of him.

I don't never go to bet until 11:00 p.m. at night. And I turn him the last time and as soon as I get ready to go to bed and I sleep about three or four hours; I get up and turn him and I take care of him again. And then I go back to bed. And anyway, I have to stay here 24 hours a day, seven days a week; you know how it is. And I don't have anyone to see after him while I -- I have to go get my groceries and pay bills and tend to things on the outside. But I have to leave him. Of course, he can't move. And then I have the rails up. But anyway, I don't like to leave him.

And it's getting to me, too. I'm getting down. The last two years, I can tell -- I have a heart valve leaking. I've been on medicine for two years now. But anyway, I need someone to stay with him while I go out, because when I go to the store I'm worried about him. I hurry back. And that's my problem, is needing someone a day or two week or something in the way of taking care of him while I get out and get some things done.

I've been listening to you talk, and I hear you say -- I heard you say that you all was working on that and going to put it through, this respite, you know, people needing someone to sit with their husband or loved ones while they're out.

THE PRESIDENT: Yes, what we want to do is to, basically, reward people like you who have the courage to do what you're doing. I mean, to take your husband out of a nursing home and start caring for him all by yourself at your age is an astonishing thing. And when I was governor of our state, I worked to try to give people more choices in long-term care. But with the way the federal

programs work today, there is a limit on what you can do. So our plan would give people like you a chance to get some help from nurses and other assistants who could give personal care to your husband in your home while you go out and run errands and get a little break from time to time. And, again, it would be helping you, but it's also less expensive for us than if your husband were in a nursing home.

Q Well, yes.

THE PRESIDENT: So, I sure admire you. I hope that I'm in half the shape that you are if I get to be 85. I really think it's very impressive that you're doing this, and it's a real tribute to your commitment to your husband. I appreciate you so much.

Q Well, I'm proud of you, too. He's helpless, completely. He has a feeding tube in his stomach; I have to take care of him. He has a motor to keep air in his mattress -- the doctor wanted him on an air mattress. And he's been taken care of real good. The nurse comes every week and the aide comes five days a week, and Doctor Owens watches over him very close. And they all are very pleased of me and my work -- the way I take care of him.

THE PRESIDENT: The hospital has good outpatient services there. I know about that and that's good.

Q Yes.

THE PRESIDENT: Well, thank you very much, ma'am.

Q Well, it's good to talk to you.


Q Thank you. I voted for you.

THE PRESIDENT: Well, thank you, I appreciate it. (Laughter.)

Q I watched you on the television -- every program I can.

THE PRESIDENT: Thank you so much. It's nice to hear your voice and good luck to you.

Q May God bless you in your work.


Is Gene Hayes there, from Fresno?

Q Good morning, Mr. President.

Q Good morning, Gene. Gene is a victim of Parkinson's Disease, who's caring for his wife who suffered a heart attack. And I think you also are caring for your father.

Q That's right.

THE PRESIDENT: Why don't you tell us a little about that? How old is your father?

Q He's 93; he'll be 94 come May.

THE PRESIDENT: Well, tell us a little about your situation.

Wait a minute. Ms. Kendall -- hold on one moment. We hear somebody talking on the line here. Everybody, please be quiet.

Okay, Gene, go ahead.

No, we can hear you talking, Ms. Kendall. Be real quiet, so I can hear Mr. Hayes.

Q Oh I see, oh, thank you.

THE PRESIDENT: Bless you, that's all right. Go ahead, Gene.

Q On October 1, 1988, the wife had a stroke and it left her in a comatose state. Velora was in the hospital for 11 days and ever since that time when we've had her here at home.

I've heard different people there talking and we've got the same situation in a lot of areas here, but we've had to go on to kind of talk about long-term health care and things that we might need through the experience that I'll had here. We've had a lot of help through the community. I know they had a big dinner for us and all, and raised money for Lora. But, finally, it's run out after all these years.

But Lora, she has to have total care -- someone by her bed for 24 hours a day. She has a lot of phlegm in her throat and someone has to be there to take care of that situation, where she won't be choking. And we turn her every two to three hours. And she had one -- I have to bring this up -- she just had one bedsore and that was when we took her home from the hospital. Since that time, why, she hasn't had any type of bedsores at all and she's been in bed now for going on six years. Each day we get her up and set her in the chair for an hour and a half to two hours after her bath. But it seems like she's following a lot of sound now and everything, and I think she's actually getting better.

I think to be a home care-giver that we need the three ingredients I'd say would be love, hope and faith. And we just pray every day that this will be the day that she'll wake up. We do have a lot of care here that I heard some of the ladies say they didn't have, like we have the Central Valley Care-givers Resource Center, and they furnish respite care for us and they take care of times that we need to be away from home; help us with the financial part there.

THE PRESIDENT: Do you have out-of-pocket expenses for help that you have to pay?

Q Yes, I sure do. I have to have help around the clock, and there's 10 hours that we take care of her solely by ourself. But other than that, I have a day person and a night person and then I have a relief person that kind of helps.

THE PRESIDENT: And you have to pay for them out of your own pocket?

Q Yes, I do.

THE PRESIDENT: You don't have any health insurance that covers that?

Q No. When this happened, she was 61 and we didn't have no Medicare. We wasn't eligible for it -- we was too young. And insurance, I just dropped it six months before -- we had no insurance. So we kind of sifted right through the cracks at that point. And we've been having our retirement savings put up and we've been using that, but it's begun to kind of dwindle away. And we had to sell several things, like our motor home and things like that.

But we just take it one day at a time and just trust this will be the day that she'll get better.

THE PRESIDENT: And you've got your father there with you, too, right?

Q Yes. Dad's 93 and he has heart problems. We have to give him medicine a couple times a day and we help him with his bath. I've got to help him with his bath, and at times we help him with his clothing. But Dad's a big help, too. He sits in his wheelchair and he watches her all the time. He never lets us forget when it's time for her medicine, or it's time to turn her. He's always there to say, hey it's a certain time. And I don't know what we would do without Dad, because he helps us, too. But the three of us just make out fine because we have a lot of help and it seems like things have been going real well.

THE PRESIDENT: Good for you.

Q I'm thinking about a little later on, it might come to mortgaging; but we're going to take that one day at a time.

THE PRESIDENT: I wish you would. I wish you'd come see us. Take care of yourself, sir. And thank you for your example.

Q Thank you.

THE PRESIDENT: Is Mary Hammer* there from Blacksburg, Virginia.

Q Yes, Mr. President. I guess my story's a little different from the rest