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parents & children

photo of muller

Dean of medical education, Mt. Sinai Hospital, New York City

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What are [your parents'] expectations of you? Have you had those conversations?

We've had the beginnings of those conversations. ... I think their expectations are very typical and very traditional: none, zero. They don't have any expectations that they'll move in with us. They don't have expectations that we'll have to do anything extra for them. They don't want to be a burden. They'd like to stay independent. So it's typical and it's traditional.

But I think most children, certainly the children of the patients that we take care of, want to be there, and they feel like it's what they've always wanted to do. In a sense, they pay their parents back for a lifetime of being cared for. But at the same time, parents sense that it means a lot of sacrifice, that it will be a burden, that it will cost money, that it will take time. And that's without even considering the fact that someday they may fall and break a hip; they may become incontinent; they may develop Alzheimer's and become agitated. And what about the kids? And what are people going to say? It goes right back to the question of our culture and society, and what's accepted and what's not accepted.

I don't know anyone in our neighborhood [in New York City] where we live, for example, who have parents who are living with them. I don't even know where all those parents are. ... If you go to different communities, maybe if you go out to the Midwest, maybe if you go to more rural areas, people do tend to stay in a more tightly knit nuclear family, and they do take in their folks, and there are three or four generations sometimes living together in the same home.

Would you feel like a failure if you had to put your parents in a nursing home?

I wouldn't do it, no matter what it took. It's easy for me to say; my wife's not sitting here. But I think she feels the same way about her parents. I can't think of a reason in the world that they would have to go live in a nursing home. I can't think of anything in our lives now that we wouldn't sacrifice for the sake of their being able to stay with us. ... For the sake of being able to stay around and stay together, and [to] send a message to my kids, there's nothing that we wouldn't sacrifice in order to have them be with us.

What message would your children get from that?

The message is, people are important. Has nothing to do with being old; has nothing to do with being Grandma and Grandpa or whatever; doesn't even have anything to do with family. It's just that people are important. And the people who need help the most are the people who are the most important. But it's a hard message to sell to kids in a society that doesn't really believe in that.

photo of kass

Chairman, President's Council on Bioethics 2002-2005

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America is still a country which says that the responsibility for caring for the elderly who can't care for themselves is the family, but that is now an increasingly difficult task for families. People are having fewer children. The families are themselves marrying later and having children later. They're still caring for their adolescent young when they're also supposed to be caring for Mom and Dad, who can no longer care for themselves. It's an economic as well as a human demand on strapped, middle-aged and middle-class families. This is very, very demanding care and very needy care. People want to do a good job at it, but they have very, very limited support from the community or from other members of the family.

One very, very telling study shows that only those people who have three or more daughters or daughters-in-law have a better than 50 percent chance of not finishing their life in a nursing home or an institution. For all of our talk about gender equity, it's still the daughters and daughters-in-law who give care. And it's a hard job for one daughter or one daughter-in-law, especially if there are small children to be cared for. …

What difference does it make to be cared for by someone who loves us?

The question is, what kind of people provide the best care? And does it matter if our caregivers know us and love us? Other things being equal -- and they're not always equal -- I think it matters a great deal that the life that is being cared for is known to be continuous with the life that one led before, and that the people who care for us fit this part of life into a long, lifelong relationship.

It's true with a family doctor who is not meeting this person for the first time when he or she shows up in the nursing home or in the emergency room, but has known this person through the childbearing years and through their prime, and has guided them through this period of decline, and can say with confidence, "I will stand with you now as I've stood with you before."

That is also, it seems to me, what family members at their best are able to do, not because they have some kind of professional contract, but because it's somehow tacit in the understanding -- and really, in good families, it's just what families do. This is what life has brought us. The necessities of life are an occasion in which we show our love, and the people whom we care for are that much better cared for because we know them….

It's true that if there's bad family history, those things are done with resentment. Even in the best families, people get tired. One can't somehow expect people to be saints 24 hours a day, every day of the week. And I have seen some professional caregivers, some professional nurses especially, who are so giving and so loving and so attentive that it would be hard to imagine family members doing it better, even if they've simply been summoned in a time of crisis. …

Lots of us now want to spare our children those kinds of burdens. One hears it said over and over again: "I do not want to be a burden to my loved ones." People write living wills and make other kinds of arrangements, precisely hoping to spare the burden not only of care, but even of decision making about what should be done with us when we get to be old and infirm and incapable of deciding for ourselves.

I understand that temptation. It's partly a matter of pride. One doesn't want to be seen by one's children and one's grandchildren in one's infirmity and in one's nakedness. One doesn't want to deflect them from their own work and from the care of their own. On the other hand, this is part of life, and I want my children to teach their children what it means to shoulder these responsibilities and to teach the interconnectedness of the generations.

photo of gleason

Visiting Nurse Service of New York

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What will you do with your own parents? What's acceptable/unacceptable?

Tough question. She's very, very independent, and she told me, "I do not ever want to be in a nursing home." She didn't tell me what she wanted to do instead, but I think she's imagining, like we all do, that it's just going to be like an instantaneous [thing] -- we won't be here anymore; nobody has to worry about it.

We haven't really had an in-depth conversation about that. And I couldn't make any decisions for her. At this point I wouldn't even know what to say about what I would do. But I have told her that I think we need to have the conversation, for all of our sakes. I have to spell out what my wishes are. My husband, too. All of us now -- when we're able to speak and think about what we want for our own care, we need to spell it out.

photo of deberardino

Has struggled, together with her family, with her parents' failing health.

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Seeing my mother decline mentally and physically has probably taken the greatest toll on me. No one is prepared, ever, to see -- particularly daily -- a decline in a parent. With Mother it's been a slow process, but the last few months seem, for whatever reason, things have escalated. …

I keep trying to fix things, and even though my head says I can't, your heart wants to fix everything. And the needs only increase, and you find that you might fix one thing and then the next minute it's something else. So I really have to be honest and say, I have not gotten to the point where I've relinquished much of what I need to relinquish and say, "It's all in God's hands."

It seems as though every day I meet a friend, an acquaintance, a relative who's faced with this very same dilemma of caring for their parents and making these difficult decisions that no child wants to make. And every day there is a decision, even if it's a little decision like, well, do they need an antibiotic? My parents do have a living will and a healthcare proxy, but when push comes to shove, are you not going to fix that fractured hip? Are you not going to fix those fractured ribs? Are you going to allow your father to choke? Or are you going to make sure that he doesn't have popcorn and things of that nature? The ups and downs in the day are many.

I certainly hope that our health continues to be as good as it is, and we just pray daily for strength, for courage and for the ability to do as God asks us. It's a journey. And it's not a journey without my brother and my sisters and my sister-in-law and my brothers-in-law. They all feel this.

photo of strongin

At 94, still working as a stockbroker in New York City.

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You have a very engaged family.

Oh, I've had wonderful support from my family. We've had wonderful relationships. I had close relationships with nieces, nephew. No, I've had a lot of support, and I guess not everybody has that.

Your son, daughter, grandchildren are a part of your life?

Oh, they're definitely part of my life. I'm very lucky that both my children live in my city; that my son's office is two blocks away, and he comes and has lunch with me, and my daughter two or three times a week. That's luck.

Would you ever consider living with your kids as you grow older?

I wouldn't do that to them. (Laughs.) Actually, my daughter has asked me to do that, and I said, "I like my son-in-law too much to do that to him." (Laughs.)

I live alone, and I like as little help as possible. I have a rather large apartment, but I only have someone come in four hours a week. I do everything else myself. ... Some people go to exercise class. I find that I never needed exercise class. I found a lot of exercise around the house. (Laughs.) And it isn't always just boring work. It's taking care of things you love, things you treasure owning.

Have you had conversations with your kids about a health care proxy?

My son, who has power of attorney in case anything happens to me, asked me to sign a paper that would authorize termination in case of a hopeless-looking condition, and I said, "No, I'm not signing that." There are a lot of cases where doctors have said, "This patient has three months to live," and they've lived 30 years. The body is a healing machine. It heals so much by itself. The swelling on the brain goes down. The body does it. They're not God. They can't always know exactly what's going on or how desperate it is. This was during the [Terri] Schiavo case. And I said no, and my son the lawyer asked me why. And my daughter said, "In case you are impaired for weeks and months, do you want Landey [Strongin's son] and me to come to the hospital every day and weep over you for weeks and months at a time? Is that what you want for your children? I don't want it for my children. I've signed it."

And I said, "I don't care." (Laughs.) I said, "First of all, it will never be weeks and months. My body would terminate quickly. My heart would see to it that it would be quick. And I don't want somebody making that God-like decision for me, period."

Maybe that's just not being willing to give up control over my life. The only way I can explain it, is that I don't think that medicine knows everything perfectly, and that while there's life, there's hope. It's part of my general optimism, I guess, and confidence that if it were that hopeless, my heart would intervene and say, "The end," and I'm willing to let it go at that.

Why do you think so many people sign those?

Because they don't want to see their children suffer. And I said to them, "I don't care." (Laughs.) "Suffer." (Laughs.) ... I've always said, if I can open one eye and see somebody that I love, I want it. That's all.

photo of farber

Geriatrician, Mt. Sinai Hospital, New York City

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Has the new longevity created new burdens for family caregivers?

Most people still retire at 65, and they don't live [just] five or 10 years anymore; they live 10, 20, 30 years [more]. And savings that was enough for five or 10 years is simply not enough for 20 to 30.

If people want to stay at home, ... they're going to need help, and that help costs money. There are huge costs associated with trying to stay home. But sometimes [the funds are] just not there. Lots of times family steps up, and I see tons of people that have family caregivers that have moved in. ... There's a lot of what we call noncompensated care for older adults, which means using family members and people that don't get paid to [provide care] because it's not obtainable from other sources.

Oftentimes it will start with just a few hours a day, maybe a couple times a week, someone to come and help do some of the heavier housework, the food shopping, cooking a few meals, some of the more [heavy] cleaning, laundry, things that get too difficult for some older people to do. Then that may progress to more of a daily need; that people actually need someone to kind of help them get dressed every day, bathe and remind them to take the meds. ...

And then, as people progress, they often need more hours. Ultimately they'll require either someone to be with them 24 hours a day, seven days a week, or [to be] in a setting where there are people available 24 hours a day, seven days a week, and that's a nursing home. I have many patients who have that level of care at home.

I'm thinking of one person in particular [Mrs. Paunescu], who clearly is eligible for nursing home placement -- she's very dependent and needs care all the time, around the clock -- and her daughter will not in any way, shape or form consider having her mother move to a nursing home. She considers it abandonment, failure of her duty as a daughter, and would never dream of entertaining that possibility. That's rare, and that's becoming rarer. ...

More commonly, what I see here is [that] people really do care; they want to help, but they're just not around. The son is in Florida and the daughter's in California and the patient is in New York. People are busy. They've got their own lives; they've got their own families; they've got their work. They can't just pick up and move. And Mom also may not want to move in with one of them and leave all of her friends and everything she knows to move in with a daughter and feel like a burden. ... And there may not be so much room in that home to accommodate other people. It's a big responsibility, and I don't think most people realize what a major responsibility that is. ...

A lot of caregivers get, quite frankly, depressed, frustrated, burnt out, and leave or move on or just can't do it. I see a lot of families that try or start, and say: "Look, we don't have the wherewithal to do this. Can't we have her in a nursing home?" ...

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posted nov. 21, 2006

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