Dr. Murphy Interview
September 20, 2007
Interview Sections
- The Growing Challenge of Elder Care
- Big Issues in Caring
- The Financial Difficulties of Elder Care
- Goals for Care
- Nursing Home Concerns
- Physician Care of Geriatric Patients
- Elder-Specific Health Concerns
- Why Make House Calls
- An Example of Geriatric Care
- Coping with Cognitive Deficits
- Deconditioning & Fatigue
- Estimating Lifespan
- Quality of Life & Burden of Care
- Good Attitudes & Good Health
- Wound Treatment for Elders
- Love & Elder Care
- How to Prepare for Elder Care
Dr. John B. Murphy specializes in geriatrics and family medicine. He teaches and practices medicine in Rhode Island. In his interview, he describes his experiences caring for elderly patients and shares his thoughts on caregiving, elder-specific health concerns, and the growing challenges of elder care.
The Growing Challenge of Elder Care
Q: In a very general sense, can you frame how big an issue is caring for our parents?
DR. MURPHY: The issue of people caring for their parents is, in the United States right now, not just a very large issue, it's a huge issue. It's a tidal wave coming at us. We currently — I am one of 75 million baby boomers who are moving into our older age. And many of us have recently, or will in the next decade, care for parents who are at the tail end of their life and need a lot of assistance. And we have, with the next generation when we get there, it's going to be even bigger because the number of children per family has diminished. The family networks are so spread out around the country that it's harder and harder to do. And we not only have a huge issue now and in the next couple of decades, but it's only — It's going to grow dramatically over the course of the next generation.
And it's very tough for families, particularly with our current situation of most families having both parents working. The sandwich generation really is getting hit in caring for their older parents and their children, and in some cases, many cases, caring for their grandchildren. There's a lot of grandparents who are caring for their grandchildren who are also caring for their parents. And that's a huge burden for anybody, and particularly in a two-breadwinner family where there's not a person who can take the time to do that work.
Big Issues in Caring
Q: What are some of the big issues that people deal with in caring for their parents?
DR. MURPHY: Some of them are financial, and that's always a strain on families. Dealing with patients who have cognitive deficits, memory problems, dementia, it can be a hugely stressful situation. And at all stages, the stage when the memory problem is just starting to rear its head, but the parent is functioning pretty independently, one doesn't want to take that independence away, but one wants to make sure that they're safe. And there's a tremendous amount of stress that people experience in terms of trying to balance that.
As you move through it, then there's the issues of should mom or dad be allowed to drive? And as soon as they're not allowed to drive, well then I'm on the hook to make sure they can get where they need to get. Or I need to make sure there's a system that can do that for them, and particularly if you're at a distance, it becomes much harder.
Within families, the balancing of who's taking care of it and who's the primary person responsible creates a lot of stress people often don't see between siblings and in-laws about who's bearing what burden, who's bearing what financial piece, who's bearing what personal piece. There are all sorts of issues later on in terms of dignity. Parents who need assistance bathing, patients who have problems with continence, for children to be moving into that role is a real role reversal and some people are able to make that jump, some people aren't. Many times, that's when it really comes home to children, the adult children, that this is what my mother did for me 50 years ago when she changed my diapers, and now I'm changing hers. And that some people can do and some people can't. That can be a very difficult piece for families to deal with as well. Not uncommonly, the daughter is able to do it, but the sons are not, and the daughter wants to take her vacation and the brothers are saying, "Well, you know, don't look at me to do that." And that's where some of the strife can come up.
Just the time away from job, time away from their own families can be huge burdens. And people at distances, it can be very difficult finding resources for parents in your parents' community when you may be on the other side of the country, is quite a difficult thing. And then the idea of moving mom and dad, or mom or dad, closer to me so that I can be part of that process sometimes is very stressful, but it also uproots them from their community that they may have a lifelong group of friends and all of a sudden they're in a new city trying to make new friends, don't have a natural network. And one of the themes that older people experience much more often than all of us is loss. And whether it's loss of function, loss of financial ability, loss of friends. And if in one fell swoop you remove them from their entire network of friends, that can be very difficult for them at times. It's a tough loss.
The Financial Difficulties of Elder Care
Q: One of the issues that we've heard a lot about is the financial difficulties. But what I've seen in a few cases that we looked at is if you're wealthy enough, you can take care of yourself. If you're sort of poor enough, you're actually fairly well taken care of by the state. Where's it become difficult financially?
DR. MURPHY: You're right, at the two ends there are — If you have enough money, you can buy whatever you need. And that's at a pretty high level, though, because the things that people need are very expensive. And there are unique programs, such as PACE programs and other things that provide in home care to people at the lower end of the SES [Socioeconomic Status] spectrum. But much more important than money, and the data show, that the single most important variable to never spending any time in a nursing home is having a daughter. And that is not a sexist comment, I want to make that clear. It's based on the data and having a daughter is the most powerful predictor of not spending time in a nursing home.
That aside, families in the middle, it's very difficult. And they're the ones who not only have not enough money to afford what the upper end population can afford, but they're often people who if they do take an hour off, or two or three, to take their parent to the doctor, they're not going to get paid for that time because they're in an hourly job and not on a salary basis. And so that can make that stress that much more difficult for them.
And so they get pretty inventive, but I think we also have a fair number of cases where the balance between safety and what's actually being provided is not what it should be because families are so stretched. Not that families are intentionally trying to do that, but there are times that's the case.
Goals for Care
Q: What are the goals for care that people have once they realize they're in a situation where they need to start caring for parents? What do people want for their parents?
DR. MURPHY: It varies widely, and it also depends, in large part, on what the parents are able to express that they want, and also what the expectations that the children have as they grew up. You have some families that there's no way in the world that they're ever going to let their mother or father go to a nursing home, even though we can clearly show to them that their mother or father would do better if they were in a nursing home, and that they're not — The parent does not mind that option. But they were raised with this sense that that would be a bad thing, that they would be letting their parents down. And so I think people want to see their parents happy, and they have visions for what that means, and that's their real goal. Maintaining dignity, maintaining independence or goals, being as pain free and as able to do the things one likes to do are what I think families would like.
Nursing Home Concerns
Q: It often seems people do want to keep their parents out of nursing homes. Is that a legitimate fear, or why do people feel so badly about nursing homes?
DR. MURPHY: I think there probably are a few reasons behind that. Probably as many reasons as there are people. But we have not done a superb job in long-term care in this country. Up until the mid-'80s, we had lots of examples of really horrendous care being provided in nursing homes and federal government got in line, created regulations and has set some standards and that's improved dramatically. But a nursing home is not a palace, and there are very nice nursing homes and not so nice nursing homes. But I think most people like the independence of having your own place. Typically, in most nursing homes, you're going to share a room and that's not something that most people have done since they left college, or left home with their children, other than sharing it with a spouse. And there are other sick people around, and oftentimes, you know, "I don't want mom and dad being around other sick people. I want them to be in an environment which is happier and more positive."
That's not to say that nursing homes aren't — It can't be a happy place, but there is a lot of loss, there are a lot of people who have memory problems, cognitive deficits in nursing homes and they're, in general, not what most people would want for their parents. That said, I think that they are the right place for many people.
There's also, I think, a myth out there that America and Americans tend to put their older people in nursing homes as opposed to caring for them in their homes than some other societies, but that's not the case. That is a myth. For every person who's in a nursing home in the United States, there are at least two, maybe three, who are in the community being cared for by families who are equally as impaired. And so there are just a fair number of people who do not have the family to be able to do it, or who have impairments that are significant enough that they really need to be in that sort of a setting.
Physician Care of Geriatric Patients
Q: As a physician who takes care of elderly people, what's the difference between taking care of someone who's quite old and someone who's not?
DR. MURPHY: There's lots of differences. The one that always comes to mind first is they have more stories and those stories are important to them. And it's how I remember my patients. I now focus exclusively on taking care of older patients. But I was originally trained as a family physician before I did my geriatric training. And until just four or five years ago, I still had some children in my practice and many adolescent and middle aged people in my practice, although it was mostly older patients. And but the stories that patients tell me are what distinguishes that population the most. They've got richer and a longer history to draw on.
It's much more complex, it's like taking care of the infants and children that I used to take care of because invariably, there are family members involved of the care. You have the 50 year old who comes into my office for hypertension and diabetes, or whatever, it's the rare situation where I'm talking to family about that. Maybe the spouse coming in and wanting to know about diet or something. But there's not that involvement of the family. It's the rare situation that a patient comes into my office nowadays without a family member. Far more often than not, there's a daughter or daughter-in-law who comes in the office with the patient. And, in fact, there are some sons who come in, but I think I'm probably more likely to see the ex-daughter-in-law come in with her ex-mother-in-law than I am to see a son. And there are some sons who are doing superb jobs, but it tends to be the daughters and daughters-in-law who are doing the work.
Elder-Specific Health Concerns
Q: There must be some medical conditions that are much more serious for the elderly. Can you list off a few of those sorts of things?
DR. MURPHY: Oh, yeah. There's a balance. I mean, feet are really important, for some people diabetes is important. But feet are what we walk on, and one of the major things that you need to be able to do in caring for older people is to make sure that they're going to maintain their independence, be able to walk and not fall.
Falls, hip fractures, are potentially inter-cranial bleeds, subdural hematomas and things that can occur with those falls, are a major issue. And so preventing falls is a key thing as a geriatrician that one's thinking about, and feet are a part of it.
In hospitalized or bed-bound patients, skin is a key issue. I'll be making rounds in the hospital with some medical residents and they religiously will listen to the heart and lungs every time they go to see a patient, and if I have an older person who's admitted for an infection in their leg or urinary tract infection, well I don't think it's inappropriate to be listening to the heart and the lungs. It's very inappropriate to not look at the heels as they're lying in bed, or their back to look for the early signs of pressure sores. And in fact, far more important to be looking at those things than it is, in that case, to be listening to the heart and lungs. So there are those sorts of issues.
It takes longer for one of my patients to get from the waiting room to get to my exam room. It takes more to get them from the chair that I'm speaking to them in to the exam table. Hearing deficits create difficulty in communication. The communication issues for people who have cognitive deficits multiply. And so those complexities in gathering data and implementing plans, I think, make it a little bit comparable to the psychiatric situation where you're dealing with the whole family. Visual problems, again, a lot of sensory deficits make it much more difficult.
And our patients have much less reserve. Three days for anybody in a hospital bed recovering from a pneumonia, you're going to be tired for a little while after. If you're doing that at 93, it's going to take a long time to recover from a brief hospitalization even though the illness, the bacteria is dead, the pneumonia is gone, but the de-conditioning that occurs in just a brief period of time with somebody who's in their late 80s or 90s is pretty dramatic.
Why Make House Calls
Q: Geriatricians make home visits more than almost any discipline these days. Why is it important and useful to see where a patient lives?
DR. MURPHY: Well, there are two reasons to make a home visit. One is because that's the only way you can really get to see that patient, the bed-bound or housebound person. And the second is you need to find out information that you haven't been able to garner in your interview with the patient in the office. And so most of the home visits we make, in my group and for myself, are people who are in the former category. And it's just burdensome for them to get out and come to the office. We can't have a large segment of our practice that way because we would lose our shirt, but for those patients in our practice who do become homebound, we try to continue to care for them in their home.
The latter one, though, to garner additional information, there is nothing like seeing somebody's home. When you're dealing with an older person who has multiple medical problems and some frailty, getting into their home can often solidify what you need to do in terms of your plan. And when I make a home visit, particularly those diagnostic home visits, what I call them, I'm pretty snoopy. And I go in and I don't ask if I can look in the medicine cabinet or the refrigerator, I'll say, "Can you show me where your medicine cabinet or refrigerator is?" And I'll open that refrigerator and I'll look to see what's in there in the way of food. I'll look in the medicine cabinet, in the bathroom, to see what pills are there. I will look in the bedside drawers and at the bedside table to see what's in the drawers. And I'll occasionally open some closets and things.
And it's amazing what I've learned in those situations. People, when they know you're coming, oftentimes will spruce the place up and I can vividly remember taking some residents, doctors in training, out on a home visit one day and to a senior high rise to see this one woman. I was doing my usual routine, and they were a little bit — They weren't so comfortable with my being a little pushy. And I opened one closet, and on the floor were 15 or 20 empty liquor bottles. And, you know, that — Okay, we now understood why there was this problem and we were able to get the family involved and identified who was delivering the liquor because she was barely leaving her house. Very interesting, and not uncommonly, we all have had patients who — "I'm not taking any other medications. No, this is the list of medications, I'm not taking anything else," and you get into that bathroom and you find that there's 10 other medications. "Well, I'm not taking those. They're there in case I need them." "Well, this antibiotic, when did you last —" "Well, we did take that last month because I had a cold for a couple of days and it got better, so I stopped."
And that month, that patient was on an anticoagulant, coumadin, that can be affected greatly by the medications one takes. Her laboratory values were way off and we couldn't figure it out. And we talked to her about diet and we talked to her about other medications. "No, no, no, no." Well, the medication that was in that cabinet was one of the ones that I am sure sent her laboratory values off the charts for the blood thinner she was taking.
An Example of Geriatric Care
Q: Very good. Let's talk about more specifically Happy White. Present her case to me in lay terms, sort of describe what her condition is?
DR. MURPHY: So Mrs. White, and she's at times given me permission to refer to her by her first name, but my practice is generally to call my patients Mr. and Mrs., or Dr. or whatever. But Mrs. White, I've cared for her since the early 1990s at a time when her husband was referred to me by a colleague because of some fairly significant issues that needed to be addressed promptly. So I met him initially and cared for him for probably a year before I started caring for Mrs. White.
And I actually care for another family member as well, so I have two generations in that family and have had the opportunity to see them over an extended period of time, through the death of Happy's husband and also to see the generation growing older. Right now, Mrs. White has a number of medical problems, and the biggest one, she really stepped a little bit off the edge I guess about 2 % or 3 years ago when she had a stroke. When she was here at Rhode Island Hospital, and she's given me permission, and her family have given me permission, to speak to these issues.
And at that time, we identified that she had an irregular heart rhythm, a condition called atrial fibrillation and we were able to manage her and she came into the emergency room with a dense hemipara (?), so she couldn't move an arm and a leg and had garbled speech. And by the time she got through rehabilitation, really the only thing she was left with was some memory of that event. But she was significantly frailer after that and we for a couple of years were able to manage her on the blood thinner to prevent those blood clots from happening again.
When she came in with a seizure to the hospital, and it turns out that she had some bleeding in her brain, her blood levels for the medication were appropriate, for the blood thinner were appropriate, but we were stuck with making decisions about whether or not to continue her on the blood thinner. And she hit that point where we had to balance the risks of protecting her from a big stroke against the risks of her having a hemorrhagic stroke that we would cause from the medication. And we went back and forth with the family for quite a while and eventually ended up making the decision that we wouldn't manage her with the coumadin, we took her off of that medication.
So in addition to having had the stroke and the irregular heart rhythm, she has some coronary heart disease and also has some significant arthritis. But she's a tremendously positive woman and very gracious and has done very well with what she's been dealt with. And I think she truly appreciates what her family is doing for her, I know that. And oftentimes, that gets missed in some situations. So she's had a number of conditions, but she gets around, she gets out. It's not easy for her to get out, but she does and she still stays very active in a number of different ways.
Coping with Cognitive Deficits
Q: She also has some dementia, I think. It's a little hard for me to see it because I don't know her very well. But Priscilla talks about it a lot. How does the dementia manifest itself?
DR. MURPHY: She does have difficulty with cognition. That's related to the stroke and subdural hematoma that she had and the intracranial bleed that she had, as opposed to your typical Alzheimer's. And she does have that, but she has tremendous social graces and like many people her age who do have cognitive deficits, those social graces allow her to function in a way that unless you actually pry a little bit, those deficits don't come to the fore and are not seen. And to a large extent, don't involve her — Don't impair her social interactions to a great deal. Her social interactions are at a different level than they were a few years ago when she was going up on stage at a university and receiving an honorary degree and speaking. But she still is active in the community and gets out to various activities. I think it also makes a — It's a new set of challenges for a family to deal with.
Q: Tell me more about that.
DR. MURPHY: Well, I think for all families dealing with people who have cognitive deficits, whether it's Alzheimer's Disease or some other condition, there is a stigma of shame that shouldn't be there, and people don't want their family member — Don't want people to know that their family member may have a problem. There's also very different responses in children, different children. It's not uncommon that the child who lives close and is involved in the day to day activities of the parent is very aware of the cognitive deficit and is raising that as an issue with siblings who live at a distance who come in for a day or two and say, "No, Mom's fine. You don't have to worry about it. She seems fine to me." And until one is dealing with someone's finances or the fact that Mom got on the wrong bus and ended up in Boston as opposed to New Haven, it's only the people who are dealing with those incidents that really, it's brought home to them that mom or dad has that problem. It's not uncommon that the cognitive deficits are unearthed when, for the third time, somebody forgot to pay the mortgage and the bank is knocking on the door. Or, for the third time, mom paid the electric bill three times in a month and somebody called from the electric company and is saying, "Would you look into this?"
Deconditioning & Fatigue
Q: We've been hearing that Mrs. White is getting more tired and a little weaker, her sleep is a little disrupted. Tell me those things, if you would, and then tell me what they mean?
DR. MURPHY: Well, in her — I mean, whenever we think about changes like that, we have to, as a physician first thing, is there something else going on? Is somebody more fatigued because they've got an infection, a new illness that we're not aware of that hasn't reared its head? But in her situation, I think the biggest issue is she's become more de-conditioned. She's worked hard, and the family's worked hard, to keep her as conditioned as possible. But the combination of her previous stroke and her cognitive issues make it hard to keep that up. And so that's a big thing driving it.
And her arthritis also, more an issue for her painting and some of her other activities. And then I think her vision has played into that quite a bit. Her vision is very poor at this point in time, and so walking is a challenge and a risk. And she still gets up and walks with her walker, she still gets out. But one needs to be balancing that we want her to be independent and get to just the place she would be right before she would fall, but not fall. And finding that balance is often hard.
I think off and on, her appetite has been an issue. But I think right now, that's working pretty well. And so I think her, it's de-conditioning. She's done well, though. One of the barometers of how well she's doing is how often I get calls out of when I was normally going to be going by to see her. And this summer was bliss, so it was a good summer. And they've never been problematic in terms of bothering me with phone calls. They're actually very understanding of and respectful of our time. But I think she's at a very good period of time. At some point in time, that'll change. That could be many years from now, or day after tomorrow.
Estimating Lifespan
Q: That was my next question, what's her prognosis? How long will she be with us, how long will she be able to--?
DR. MURPHY: It literally is a nano second from now to ten years or more. My guess is, since she doesn't have any fatal illnesses, she doesn't have a cancer that we're aware of, she doesn't have severe heart disease, she does have some heart disease, so she doesn't have end stage heart failure, she doesn't have end stage lung disease. So she could go on for quite a period of time, and right now I think she's in a good place and additional time for her now would be good time, and that's what we want for our patients. My suspicion is that at some point in time, she'll develop a serious infection or another stroke. And then we'll be dealing with the issues of how to care for her at that point in time. And I've had discussions with her and family members about how hard we want to push and I think they've chosen good balances in all those discussions. I think right now, she's doing pretty darn well, and if we can get her more time like this, I think she'd want it and I know the family would want it.
Quality of Life & Burden of Care
Q: The thing that strikes me about spending time with her is that despite her infirmities and being tired and frail, she's happy.
DR. MURPHY: Yeah. Oh, there's no question about it. I think it was difficult for her to adjust after the stroke and there was a period of time when she wasn't as happy and positive as she's been, knowing her before she became ill and since then. But that was fairly short-lived and she really cares about people and about — She also cares about doing the right thing. And she often asks me if she's doing the right things. And at this point in one's life, she can't do anything wrong. [laughter] So it's easy to say yes. And she often asks in relation to her illnesses, "Am I doing the right thing for my health?" Quite honestly, right now whatever she wants to do for her health, if she wants to eat — If she wants to put whipped cream on her ice cream, that's fine and that's not a problem. It's all about balancing the quality of her remaining life with the burden of the care.
And that's the burden of the care not just for her, and this is something I think is important about caring for older patients who have families providing a lot of care. We need to think about the caregiver system. In her situation, I have patients who are on Medicaid and patients who are wealthy, the whole spectrum. In her situation, the family has enough ability, she has enough ability herself, to be able to provide a lot of care. So it's a burden financially for them, I know, but it's one that they can bear financially.
But there are burnout issues for a family, and we need to make sure that whatever we do in caring for her takes into consideration that the family that's — Or the network that's providing the support needs to stay healthy, mentally, physically and in every way possible because that's important for Mrs. White. If Mrs. Happy White is going to be doing well, then the network around her needs to be doing well. And that's one situation where having a toe in the door with another family member, a patient, is very helpful. And having a history with the family is very helpful because I've seen the family and how well it functions and know the names of people and some about what each of them do and a little about what some of their strengths and opportunities for improvement are. And that can help me synthesize information when there's a change being considered in how we're going to do something.
Good Attitudes & Good Health
Q: One of the things that keeps Mrs. White happy is I think she has an extraordinary level of care. It's unusual, not many people can do that. But it seems like the good news is that you can be happy when you're older.
DR. MURPHY: Yeah, I think that there's no question in my mind that their ability to provide the best care and all the resources that they need has allowed her to function at a level that she might not have been able to if that wasn't there. But in my experience in caring for older families, older individuals within families, that's helpful but not essential. And by far and away, it's more about the individual and who they are rather than what they have. And there are people who I've cared for who are at least as well off, if not more so, who have all the resources in the world and are never happy and are less disabled than Mrs. White. And I have patients who have nothing, are very disabled, and are always asking if they can do something for somebody else and are positive. And I think that that has to do with how they were raised, who they are, what their previous life experiences are. And like the most important thing is to have a daughter if you don't want to spend time in a nursing home. Who the person is and what their personality's like really drives how they're going to live at the end of their life and whether they're going to be happy or not.
Wound Treatment for Elders
Q: She has a wound that doesn't seem to want to heal. In general, what's the issue with wounds in elderly people?
DR. MURPHY: I mean, it's a common issue. We have lots of patients who will, one, they're more likely to get the wounds; and two, it takes a longer time to heal. And it's a multifactorial issue. One, because of her sensory deficits and her de-conditioning and her general status, she's more likely to bump into something, bang a leg. And when she does, because her skin is much thinner, much frailer, there's less supporting tissue that normally occurs as people get older. It's much more likely to tear. And then there are a host of issues as to why it's less likely to heal. As we age, our vascular tree is — You know, every arterial vessel is going to be providing a little bit less blood to the downstream as we get older. There are nutritional issues that come to play. Our veins, you don't see too many varicose veins in 14 year olds. Varicose veins are a common thing for older individuals, so there's a lot of stasis and swelling of the legs from edema that can occur because of heart failure or because you're just sitting most of the time. Anybody who's flown on a long air flight knows that even the young, healthy people when they go from New York to Shanghai are going to have some swelling in their feet at the end. And if you were sitting in a chair most of the day, that's going to be very much the case. So there's a host of issues that make it very difficult for those things to heal.
Dry skin is common in older people and when your skin gets dry, it cracks. And we have billions of bacteria hanging out on our skin, all of us, and normally if your skin's not cracked, those bacteria aren't going to get in and cause an infection, they just sit there. If the dry skin cracks and the bacteria can get into the skin and the immune system isn't what it was 60 years ago, there's more likely to develop an infection and so it's much more common to see infected wounds in older individuals and that infection makes it much harder for things to heal as well. But with meticulous care, the wounds can heal. But it often takes a lot of work.
Love & Elder Care
Q: What's the lesson that you take from, in terms of care giving, what's the lesson that we can take from looking at Priscilla with her mother?
DR. MURPHY: There's a lot of lessons. Love is really important and like many other jobs that people love, they can do things that they could never do if love wasn't involved. And the amount of work that goes into caring for a parent in the end of their life is a huge amount of work and without that love, I don't think it would happen. That the care givers are as important to treat as the patients themselves, is an important message. That everybody needs to be willing to listen and I learn a lot from my patients and their families about how to do things differently. And not to be afraid to do things differently. You know, in medicine there are guidelines and there are evidence based guidelines about how we should manage this or how we should manage that. And one needs to balance those guidelines against the burden for an individual and for an older person who is ill, you need to feel comfortable saying, "Well, I don't care what the guidelines say, this is what we need to do in this situation."
And yes, indeed, if this patient — If somebody were to look at Mrs. White, they would say, "She needs to be on Coumadin." And we, through some bitter experience, realized that that's not the case and she shouldn't be in — We should feel comfortable doing that. So treating the patient and family network one at a time is, I guess, another lesson. Those are the ones that come to mind. I could probably go on for quite a while.
Q: I'm very impressed with something you said earlier, it's made a big impression on me, which is that one could cynically say that the lesson you're taking home is with enough resources you can buy good care, you can buy good quality at the end of life. That's not what that means. It's the inherent caring or love in a family that really counts.
DR. MURPHY: Oh, no question. I have had quite wealthy families where I could not engage the family in caring for the parent because it was getting in the way of going to Europe and going to Thailand for vacations. And oftentimes, some wealthy families who are unwilling to even acknowledge that mom or dad wasn't safe. And I'll never forget one family who the husband, the father, had very severe cognitive deficits. He had Alzheimer's dementia, and he couldn't — He was physically able, but he could introduce himself to me 25 times in 25 seconds, and each one would be an initial introduction. His wife had a chronic, fairly rapidly progressive motor neuropathy that resulted in her being functionally not able to do much of anything physically, but cognitively she was fine. Well, they were driving, and she would sit — He would get her into the car, she couldn't move her uppers or her lowers, but she would sit here and say, "Turn right, turn left," and so she was the brain operating the car through him. It was a frightening experience, and the family members wouldn't acknowledge it and got quite irate with me when I, after many admissions, reported them to the motor vehicle bureau and said, "I think there's a concern about safety here."
The family was very upset because, and they were explicit about it, as soon as they can't drive, "We have to help them out." And they were a family of means. The sandwich generation wasn't working, and had all the money to be able to do whatever they wanted. So I don't think money has much to do with any of this stuff. I mean, if it's there, it's nice and it's helpful and you can do — But it's what's in the hearts of the families.
How to Prepare for Elder Care
Q: What's the best thing to do to prepare? I mean, obviously psychologically, trying to start loving them maybe more than you did in the past? But, I mean, from a practical point of view, what's the best thing that anybody can do to prepare for this thing? I mean, long-term care insurance, is that something to look at?
DR. MURPHY: So in terms of trying to advise what people should do to prepare for parents who are approaching that point where you think they're going to need some help, I think the most important thing to do would be to sit down and talk to your parents. You know, it may not be at the kitchen table, but the vision of sitting down at a meal or in some venue where you can talk at length about what they want, what their wishes are at a time they can express those wishes. And you can start to hash things out then. It's really hard to do, both my parents are deceased, and I have four brothers, and both my parents died in their home. And I really, my heart goes out to my brother, my brothers who live close by, but my wife and I spent a fair amount of time traipsing back and forth from here to New York.
But it was hard to talk to them about, really hard to talk to them about. We didn't have a chance before my dad got ill, but with my mom I did and pushed it and she wasn't one of those people who likes to talk about things, so it was tough. And I'm in that stage now with my in-laws and they're very thoughtful people and we're starting to have those conversations. It's awkward, it's not easy, and I shy away from it. But it's oh so important to understand what the parents would want. Because if the — If my in-laws said, "Look, there's no way in the world we would ever move in with you, so please don't ever do that to us," that sets a different tone than, you know, what we might have thought otherwise. Now, they haven't said that, but so I think having conversations with people and talking about these issues, it's very hard and people avoid it.
It's painful, but we need to do it. You know, it's one of those topics, like having the talks about the birds and the bees with your kids. You know, I mean, thank goodness Bill Clinton had his affair because it was on the front page of the paper and we had to talk with my children, who at that time were, you know, seven, eight, nine, ten, eleven, twelve, something like that. You know, we had to talk about what oral sex was and we had to — You know, because it was out there. And so my thanks to Bill Clinton for that. It made it hard for me not to have those discussions. And I think we should, you know, not that anybody should have bad events, but any time something happens like the Terri Schiavo stuff, those should be seen as opportunities to drive home the message that the generations need to be talking about these issues across generations.
And in one couple, there's lots of couples that have never — I've had conversations with patients who never had the conversation with their spouse. And I've had many conversations with one member of the couple when they've never had a conversation with their spouse, the discussion.