Dr. Fine Interview
December 7, 2007
Interview Sections
- Physical Health of the McArdle Family
- Description, Signs & Symbols of Dementia
- Family Roles in Handling Dementia
- Staying Independent
- Communicating with Dementia Patients
- Caregiver Burnout
- Caregiving Today
- Common Themes of Caregiving
- Handling Caregiving Responsibilities
- Homecare & Family Dynamics
- The Difficulties of Caregiving
- Advice for Caregivers
- Elder Independence
Dr. Michael Fine is Physician in Chief of the Rhode Island and Miriam Hospital's Department of Family and Community Medicine. He is a family practice physician, and was a 2005 Medicine as a Profession/Soros Advocacy Fellow. In this interview, he talks about the common themes and difficulties of caregiving, the role of family dynamics, the changing world of caregiving, and the specific challenges of dementia and memory loss.
Physical Health of the McArdle Family
Q: Describe Mr. and Mrs. McArdle's physical health.
DR. FINE: Mrs. McArdle's physical health is basically good. She's strong. She's got clear thinking. She has some emotional ups and downstream. She came through a period a couple of years ago where she suddenly developed, kidney failure, got better by itself, thank goodness. She had to be on dialysis for a while, and that really scared her.
But outside of that, you know, she moves around. She's still driving. She's still in control of her life and of her family and her situation, though she's a person who's not a controlling person. She listens and supports.
Mr. McArdle is pretty vigorous, but his thinking is not as clear as it was. His memory isn't so good. The rest of his self is good. But his thinking gets confused easily. He has trouble with memory, sometimes gets confused about where he is, sometimes gets angry when you-- there are things he doesn't understand. You know, that creates a little bit of conflict between them. But outside of that, he would be considered in good health with the exception of the memory stuff.
Description, Signs & Symbols of Dementia
Q: Would you use the word "dementia" to describe him? Is that too early?
DR. FINE: I would probably use the term confusion more than dementia. But this is clearly on the track at his age. This is not age inappropriate, it happens to people as they get older and happens more commonly. I don't think he's at the extent of dementia that somebody meeting him for the first time would perceive a problem. Only after knowing him well and knowing his usual routine and knowing what he used to be like, do the people close to him perceive a problem.
Q: What are the signs and symptoms one would look for in that kind of condition?
DR. FINE: It's progressive, getting lost, you know, getting lost doing things that are dangerous. The classic is turning on a stove and walking away from it, Wandering out of the house, driving someplace and not knowing where one is, things that, you know--you would be better at defending yourself and not putting yourself in a potentially dangerous situation. As dementia progresses, people lose the ability to do that, and often get into trouble, both physically and emotionally because they put themselves and the people close to them in situations that are potentially dangerous.
Family Roles in Handling Dementia
Q: What is the wife's role with her husband?
DR. FINE: Well, I think her role is watching out. The first thing that really happened was, as the confusion got a little more and the family began to worry about his driving, she really quarterbacked the end of his driving. She worked with her daughters, communicated to me their concerns. Then we worked together to explain to him that driving probably wasn't safe anymore. He never got comfortable with it, but he was willing to give up driving. She, with her daughters together were coordinating that. So she took control, and made sure that he was safe.
My guess is that happens in other aspects of their life, though that stuff I don't see directly. I get to see them only a few minutes every couple of months, and it's the texture that happens inside the house and with their daughters that I think really determines lots of decision-making. She also has wonderful daughters and strong support. So they can make some of these decisions collaboratively. You know, I think she does some and I think the daughters do some. And the daughters are wonderful about keeping an eye on their parents and making sure that they have the help and the support they need.
Staying Independent
Q: Their independence is tenuous because it's based partly on her health.
DR. FINE: Well, I mean, I think that happens with any elderly couple, where one is stronger than the other. And in any elderly couple, one is stronger than the other. You don't see it just in, what might be called dementia; you see it with other physical conditions, someone who has bad lung disease, someone who has bad heart disease. You know, as people become medicine- and technology-dependent, there has to be somebody who steers them through what needs to be done. We've known for years that when the less ill or well person, should they become ill, that undermines the stability of the whole house of cards.
I can tell you lots of stories about, people who were taking care of a relative and sort of were in denial about their own illness. Then finally, their illness got to the point where they collapsed. And then the whole thing comes down. And, you know, we'll find that we have to put two people in the hospital at once, one person because they're acutely ill. Usually the well person or the person who was thought of as the well person has to go to the hospital for some surprise or disaster. And then the dependent person comes into the hospital as well 'cause there's no one to take care of him.
And then, it's sort of using the hospital as a base, we will then often need to find places for both people to live. You know, people live on this knife edge. It happens not uncommonly that one little thing pushes them over the edge and they have to re-do their entire living arrangement.
Q: Will that or could that happen with the McArdles?
DR. FINE: It could happen, probably less likely given their family construction. You know, they don't have one child or two. They have, I think, four daughters, and, of those daughters, three of them live close by. Those daughters are pretty committed to making sure their parents are well taken care of. So, you know, it's difficult for me to predict.
You know, my guess would be, if Mr. McArdle became ill and couldn't stay home, the daughters would find a way to provide some kind of housing and support for their mom. If it happened the other way around, that might be a little different. Depending on the stage of Mr. McArdle's illness, one might imagine that, if his dementia had progressed, and he wasn't really interactive with his surroundings, which happens at some point, that they might find more residential housing for him. But they'd hover around, they're the kind of people who are gonna see them every day if they go into a nursing home. They're gonna be right there taking care of things.
Q: The family fears if Mrs. McArdle's kidney ailments return, the whole thing falls apart.
DR. FINE: I think that's right, it could fall apart.
Communicating with Dementia Patients
Q: You've had this discussion before with the family, but Mr. McArdle doesn't remember.
DR. FINE: We have had that discussion before, at least once, perhaps twice, maybe even three times. But, you know, I think what you have to understand is people in his situation often don't have useable short-term memory. So they just don't remember things like that. They'll remember things from their childhood and things from growing up, but they won't remember a discussion you've had before.
And the trick is, on my side, you know, and the trick is on their family's side, not to get aggravated, to remember that it's not intentional. Also, I don't think there's a lot of profit in going into a long and detailed discussion, understanding that they're not gonna remember it for very long. And so, you know, one's discussion can be pointed and direct, without footnoting. That usually carries it. And then, you know, the question will come up again and one hopes to patiently address the question in an emotionally satisfying way. It's not just the cognitive question, but the emotional question. So you want to be attentive to where the person is emotionally and help the emotion feel better, even if the cognitive understanding isn't exactly there.
Q: Is it typical for someone to express a feeling of loss repeatedly?
DR. FINE: I think it is typical. And that's where addressing the emotional content is as important as addressing the cognitive content. You know, on the caregiver side, understanding the difference ends up being pretty critical in terms of what you say and how you say it, and where you put your emphasis. You know, essentially you want to tell people that you hear their distress, and you sympathize with their distress, and help them understand that their distress isn't about something that's either changeable, or that is about something that's gonna make them unsafe. They will often hear the emotional content of your response as much as they hear the fact content.
Q: Do you use this approach more with elderly people?
DR. FINE: Yes, in dealing with elderly people or people whose memories don't work. But most of the people whose, memories don't work are elderly and struggling with these kinds of problems.
Mr. McArdle could live for, ten, fifteen, or even 20 years--his heart works, and his lungs work and his kidneys work. There's nothing that would stop his heart or his breathing or, keep his kidneys from continuing to function. His body can keep functioning. How clear his cognition is going be is something that's unpredictable, and over how much time his cognition declines is also unpredictable.
Families often perceive people's cognition getting worse much faster than I do. I've never sorted out whether it's because I'm not so smart and I don't see the cognition changing or because I think sometimes they get frustrated. Families do. They'd like it to change-- they'd like it to get back to the way it was. It doesn't get back to the way it was, so that feels like it's getting worse, you know? Or, you know, they get tired of doing the caretaking, which is a real thing. So it feels like a long time. And that's the context in which they perceive worsening.
But I end up looking for more measurable landmarks. You know, what could they do today? What can they not do today that they could do six months ago--as a way to try to track and understand what's really happening? Though what's really happening doesn't give me much purchase on what's going happen and how fast.
Caregiver Burnout
Q: Do you see caregiver burnout?
DR. FINE: I do see caregiver burnout and with some frequency, but it varies from family to family. I think caregiver burnout happens more frequently with the single children of a single elderly parent. I don't have any statistics to support that. But, you know, somebody who's 70 or 75 and whose mother or father is 90 or 95--the mother or father lives on the knife edge, needs daily attention and the health of the, son or daughter is declining, that's where they get to a point where they can't do it anymore. It is not infrequent that we see a patient come to the emergency room and there's an expressed complaint. But beneath the surface, one finds out that the caregiver physically can't do it or emotionally can't do it. Essentially what we're seeing is the transfer of responsibility when people reach the end of their rope. It's not uncommon at all.
One of the weird ways in which we all use hospitals, is that hospitals become the transfer point. I can't do it anymore. I bring mom to the hospital, you know? I've essentially transferred responsibility for mom to the hospital. And then the hospital figures out what is to be done, 'cause I just don't have the resources to do it.
If your mother or father got ill tomorrow, and you got in a place where you couldn't really provide the physical care yourself, if you were going to start tomorrow and try to figure out what to do, most competent adults who are university educated would take weeks or months to figure out how to put the pieces together.
It turns out that hospitals are actually quite good at it, 'cause they do this a lot. But, when we use hospitals like that, we're not using them to treat disease. We're using them as transfer points to address transitions that are difficult to arrange and that we don't have an infrastructure for.
Caregiving Today
Q: Is caring for elderly parents becoming more common?
DR. FINE: Well, clearly it's becoming a more common scenario as people are living longer. You now have parents in their 90s. I'm at the age where my parents are in their 80s, and are both living and healthy, thank god. 30 years ago, we might have seen a 70 year-old elder being cared for by a 40 or 50 year-old child, now we have a 90 year-old elder being cared for by a 70 year-old child, who in turn may or may not be cared for by a, 40 or 50 year-old child.
The big difference is the change in family size. You know, the 90 year-old elder might have had three or four, children. The 70 year old elder probably has one or two children, and the 40 or 50 year-old child might have one. Demographically, there's a reasonable chance that the 40 or 50 year-old child is divorced and living in a place distant from their parent. Demographically, the 90 year-old who had four or five children is more likely to have most of those children living nearby.
So as time goes by, I think this is going to worsen, because the number of people who are close by really is changing. Somebody I take care of who's in her 70s and is at the beginning stages of dementia had a daughter who was living in California. The daughter did the best she could taking care of her mom from California. But, she was in California and we're in Rhode Island, and, after frequent trips, she gave up her career and moved back to Rhode Island, just to be close to her mom and take care of her mom.
If she hadn't moved back, her mom would be more at risk and more frail and more sort of liable to have to make decisions on her own. That really is pretty profound, because if you really think about what we mean by life and health, turns out what we mean by life and health, isn't a beating heart. Turns out what we mean by those things really is the availability of networks of people to take care of you and love you.
All physicians have been through the process of taking care of someone who comes in from a nursing home someplace who has no known relatives, who comes in, you know, after their body's been allowed to contract or distort, who comes in getting ready to die, and then having to make decisions for those people, with no one informing the decision, and, more painful, no one sitting with them to make them feel safe as their life begins to end.
Those are very profound moments. They let us understand different things about who we are and what we mean by life and health, and love.
Common Themes of Caregiving
Q: From your perspective, what are the common themes that cut across economics, and ethnicities—the common themes of caregiving?
DR. FINE: I actually think the notion of not wanting people to go into nursing homes is a common theme. I think a common theme is tiring out, despite the wanting not to. I think an interesting common theme is fear of what I'll call inappropriate fear of nursing homes--I mean, I don't love nursing homes by any means. There are some good nursing homes and some bad nursing homes, but I think people don't perceive well the loneliness of elders living by themselves. So there are many families who will, you know, 'cause mom doesn't want to go into a nursing home, will keep mom at home. But everybody goes to work all day. So mom's sitting in the house by herself, or living in the apartment upstairs or downstairs by herself. Maybe somebody checks in on her five or ten minutes a day. But other than that, she's totally isolated. And she gets depressed. And she falls and she breaks a hip and we end up in the nursing home.
I have seen a number of people who were in that situation, living by themselves, and, you know, having the steely resolve to stay independent in the community, but who, for one reason or another--a broken hip or some other medical problem or just me being worried about them being by themselves-- I will encourage them to try assisted living or a nursing home. They get into that and they do better. And they do better 'cause they have company. I mean, it's pretty lonely out there.
Part of my practice is in a rural area. I worry endlessly about people who were, you know, living as a couple. One of the members of the couple dies. The other one is living by her or himself, and they really don't do well, just because of the isolation. So, you know, this fear of nursing homes, you understand people's desire for independence, and I respect it. But I also know that a common theme is that that's sometimes an inappropriate fear, inappropriate for people's situation. You need resources to be able to take care of people outside of nursing homes. And most people don't have the kinds of resources that you need.
The McArdles have it. They are blessed many times for having it. But, the common theme is, among people who don't have them, that they want to stay outside, even though it's neither safe nor happy for them to stay outside.
Q: Does having an available daughter to serve as a caretaker make a difference?
DR. FINE: I don't know those numbers. My experience is, not whether you have one daughter but whether you have three or four. One daughter, like one son, or one participating daughter or son, probably isn't enough. Actually to hearken back to the common theme problem, there are many families across all situations in which there will be one child who's willing to do the work, and three or four children who are not. The kind of inter-family anger that sets up is pretty sad and pretty profound. You know, it's a really difficult problem.
Handling Caregiving Responsibilities
Q: How do you handle caregiving?
DR. FINE: There's no way anybody outside can handle it other than to sort of lay out that this is a 36-hour day for the caretaker, and it's more than one person can reasonably expect to do by themselves. So if it's one daughter, and the parent is particularly dependent, I'm more likely to say, "Let's talk about other kinds of living arrangements, 'cause this is gonna kill you. You may keep your mom alive, but you'll die in the process. And what good is that?"
You know, for people who are at the age where they have a dependent parent and a dependent child, it steals from everybody. You just need more resources than one person. So I don't think it's gender-related so much.
Homecare & Family Dynamics
Q: What does homecare do to family dynamics?
DR. FINE: Homecare is a variable quality. I don't really know its effect on family dynamics, because actually the right answer to the question is, I don't know its effect on family dynamics, because I'm not there with the family every day. My medical perception of homecare is the perception of chaos. I'm sure people who have the same aides or CNAs or nurses come in regularly. But there are also people who have different people every day. As I have to work with ten or twelve different agencies, I have no idea when someone calls me with information whether I can trust that information or not.
So from the medical perspective, we don't have a healthcare system. Homecare's a huge mess. One can imagine a world in which we organize it around practices, so that the homecare people are part of the medical practice. That makes the whole care situation more coherent, but there's nobody in the United States outside of a couple of isolate programs that direct themselves to this kind of activity where that's done.
The Difficulties of Caregiving
Q: Talk about the difficulties of being a caregiver.
DR. FINE: I can't identify specific difficulties because, to sort of paraphrase Tolstoy, each difficult situation with elders is difficult in its own way. I think lots depends on what the resources of the caregivers are and what the ages of the caregivers are. As the age of the caregiver increases and as the number of caregivers decrease, the potential for chaos arises exponentially. So one elderly person taking care of a more elderly, parent, would-- you know, it takes nothing to create chaos.
Imagine what it's like to not be able to drive well, be taking care of an elderly parent, have someone go and draw a blood test, you know, and find out that a parent's potassium is five point eight, which is a little elevated. Then, that's phone calls from the doctor, more blood draws, getting the person back and forth where their blood can be drawn, or getting the lab to come out to their house, different medicines administered at a different time schedule, quite difficult.
Q: Even under the best of circumstances, it's incredibly difficult.
DR. FINE: I don't see how anybody helps an elderly parent without lots of education. It's sort of masters level education, just in order to keep track of all this stuff, scheduling that's involved, you know, figuring out what the medicines are, keeping track of the medicines, getting the medicines administered on-time, finding out whether the parent has taken the medicines, dealing with diet. You know, all of this is very twitchy stuff, people may be on very precise regimens. In a way, the medical community doesn't understand the difficulty of what we're doing. And that's to say nothing of what this stuff costs, you know?
You have medicines that are now costing between three and five or ten dollars a pill. When that happens, and trying to figure out the finances and tracking the finances, and worrying about the banking regulations, and trying to deal with guardianship and the legal piece and the medical piece, and the organizational piece, to me, it's a close to full-time job.
Q: This will only get worse as Boomers age.
DR. FINE: It's an issue in part because we don't really have any infrastructure outside of families, which are of shrinking size. We don't have services in communities that are really robust. You know, for each of those things right now, you have to make an appointment. We don't have people to move back and forth very easily. We don't have services close by. One can imagine a world in which we could create such an infrastructure. it's not very hard to do. The logic of it is pretty straightforward, but we don't have a healthcare system. And lacking a healthcare system and lacking any kind of reasonable social service system, families are left pretty much on their own to fend for themselves in a way that's really sad and doesn't do honor to their parents and the contribution that they made.
Q: I tell people, "Don't get old. Don't let your parents get old."
DR. FINE: Right, I think that's right. Don't get old. Don't get sick. Don't let anybody get old or sick. Or, the other lesson is, let's build a healthcare system. It's not so hard. What makes us think we can do without it? It's sort of mysterious to me. You know, we burn people out left and right. That's not to say that there's a huge beauty in people taking care of each other. 'Cause when you see it, it's-- it's a quite beautiful thing.
Mrs. McArdle told me a story not too long ago, I saw her a week or two ago, she told me about her husband getting angry about something. I don't remember what he got angry about, but he misunderstood something that was going on in the house. He really blew his top and went around yelling at people.
Then after a day, I don't think he even remembered what he got angry about, but he remembered that he got angry. He remembered he was mean to people, which is not his style at all. And apparently he sat down and wrote his wife a beautiful and loving letter, she was just overwhelmed. She was in tears, talking about how much that meant to her. What a wonderful opportunity for people to take care of each other as they do. But, you know, what a wonderful opportunity that we all have, to set up the conditions under which people can take care of each other.
Advice for Caregivers
Q: What advice would you give caretakers?
DR. FINE: For my money, the single most important thing people can do is to prepare for everyone's eventual illness and death. Because one thing we know is that the mortality rate is 100%. Every single person dies. Nobody gets away from it, as far as I know. The one thing to do is to actually have conversations with people who are close to you, who are your so-called healthcare proxies, who you can trust to do for you what you want done if you can't do for yourself.
Most people don't want lots of stuff done. They don't want endless life-prolonging therapies if they're beginning to decline. Many people have a hard time talking about it. But if you can talk about it, it saves a lot of stuff that creates chaos and isn't necessary. So it's important that people close to you know who you are, what you want, and how you feel. It's important if you can, write it down to give them guidance and imagine specific scenarios as you do that. Getting that addressed is really important and gives great guidance.
In terms of helping prepare otherwise, I think the best preparation is staying close to people you love. I don't think there are blanket ways of preparing. Should you get long-term insurance? There are pluses and minus with long-term care insurance. Should you stay in your own house or move to an apartment? There are pluses and minuses of that. Each of those situations are individual, but, you know, making sure that your relationships are okay--we do lots of fighting amongst ourselves in families over things that don't have much meaning. So if I had one piece of advice, it's if you have a fight, figure it out and get past it and stay connected, 'cause that's what you're gonna need if things get difficult, as they will.
Elder Independence
Q: Talk about elder independence.
DR. FINE: The story of independence, and the decision about independence hearkens back to the notion of respecting what the elder wants. One wants to balance longevity and independence. Our society is cranked up to preserve long life, and to advocate for long life. Left to themselves, our medical services will prolong life at the cost of all other values. Having a conversation in which somebody who values independence say that's what they value and understand that they may be choosing between longer life and independence, is a very valuable conversation, 'cause it frees people not to do things if independence comes first.
And I'd say for most people, independence does come first. So the trick is to free potential caregivers from having to, once you get to a certain point, take you to the hospital, give you antibiotics, you know, do things for you that you may or may not-- that really are there to preserve life, when preserving independence is your highest value.
We have a saying inside medicine, an old one that hasn't been used much lately, that goes, pneumonia is the old man's friend. And by which we mean, at a certain point in life, you get sick. If you leave it alone, you die. There are natural ways of that happening. Can we zoom in with antibiotics and ventilators and all that kind of stuff? Of course we can, if longevity's what's wanted. But the saying is, pneumonia is the old man's friend. I think that really means that there's a fairly deep perception that to a certain extent, you know, at a certain time in life, after a certain point of the loss of one's close relatives, of one's old friend, that death itself may be a friend. And that's okay. And it's that humility about life and death and relationship, and articulating that humility, it really helps people as they transition from life to frailty to their eventual death.
Q: The mission for caregivers then becomes maintaining quality of life.
DR. FINE: I think the first mission for caregivers is listening. And the second mission is using what they've heard to maintain the quality that the person wanted, and what they would have wanted for themselves. We can always stick needles in people and make them live forever and make them hurt in the process. Or we can sit with them and listen to them and hold their hand. For most people, they'd rather have the sitting and listening and holding hands because at the end of the day, they don't get to live forever anyway. It's the relationship. It's the human contact that people value above all else. And, you know, the trick is asserting that in the caregiving relationship. That's caregiving. We use the word caregiving. We don't use the words "life prolonging." What's important to people is the caregiving.