As a nurse with the Visiting Nurse Service of New York, Lillian Gleason has 15 to 20 patients at a time in New York City who are homebound because of frailty and health problems. Most are elderly -- some are very old -- and they usually have multiple chronic illnesses. In this interview, she talks about the home care required for such patients, what familes who are caregivers go through, and how growing old has changed. This is the edited transcript of an interview conducted on Nov. 18, 2005. Elsewhere on this site are the stories of two of her patients.
- » Tipping points: when things start going downhill
- » The spark that makes patients want to keep living
- » Helping patients and families with end-of-life decisions
- » Thoughts on nursing homes
- » What the next generation is facing
What happens as one grows old? What typically do people have the hardest time coping with?
If I had to pick one thing to sum it up, it's the loss of independence. You have to depend on someone to take care of all of your daily needs. You might not be able to go to the bathroom; you might not be able to feed yourself; you may not be able to walk across the room and pick something up if you want it. Then after that, there's pain; there's loss; there's loneliness.
There are a lot of things that enter into being older besides just the disease. The disease sometimes brings on a lot of secondary things. We can treat the disease often, but with the combination of all the different things that happen to a person, sometimes they become overwhelmed, and a lot of time they want to give up. That's really tough, because it's very hard to motivate someone to pick themselves up and keep walking, even though it works. Or they might feel dizzy; they might be fearful because they've fallen before. So there are a lot of things that enter into it if you're looking at it holistically.
What about the struggle for independence and how the lack of it affects people?
... When you get older, and you start having trouble doing even the most basic things, it can be very devastating to a person who's been independent all their lives.
It's even sadder when their mind is clear, and they remember what they used to be like, and now suddenly making a cup of coffee is a big ordeal. They can't breathe, or it hurts, or they feel dizzy, and they need someone else to do even those really simple things for them. That becomes a real hard thing to deal with as a health care provider, as a person trying to help older people, because they struggle with that. Oftentimes they get depressed, and they lose their will to keep going.
How does that affect what you're trying to do with them?
It can really get in the way of trying to get them to the highest level of independence that we can. But I try to build a relationship with them where they trust me enough to at least think about trying some of these things. And I have a lot of support people. I can call a physical therapist or a psychiatric nurse practitioner or the doctor, and different kinds of resources are available.
Once I get the whole picture put together, and they begin to trust me a little bit, sometimes we can make a little progress, and then it might snowball into the next thing. Sometimes we can make some really good progress with some patients. Other times, we just get them to what we call the baseline, where they're not really going to get any better, but at least they're comfortable. That's also kind of a success, too.
What are the realities of the struggle for independence? Can you sketch part of a day in the life?
When a person gets older, sometimes they have a tendency to hold on to things. They don't like to throw things away. A lot of the apartments I go into are very cluttered. People can't clean their apartment like they normally would, so things tend to pile up. The walkways become more and more narrow. And then imagine a person who has problems walking anyway. They're a little off balance, and maybe they have a walking device, like a cane or a walker, which is pretty wide, and they can't navigate those narrow spaces.
“Some feel their kids are their ace in the hole; they'll take care of them. It's not always the case. I seriously have to think about what's going to happen to me when I get older. It's kind of a scary question.”
For them to, first of all, get up from a chair is sometimes really hard, because it hurts, or they can't get their balance, or they don't have the strength anymore in their legs and arms to push up. Then when they walk, they have balance problems, and then they may not be able to get through the hallway or make a turn or things like that. They may also be very fearful, because they may have had a fall before.
Then, if they succeed through all of that and they get into the kitchen, then they have to think about turning on the stove, which can be dangerous if you don't have your memory. Then they have to have manual dexterity enough to take a cup out of the cabinet and put the coffee together and pour the coffee and then somehow transport that cup of coffee back to a place where they can sit and drink it while they're navigating the cane or the walker or this or that. It's very complicated, and we don't really think about all those steps, because for us it's a two-second thing.
It must be hard emotionally to accept that you can't do those things.
The loss of independence is, I would say, crucial to how a person feels about themselves, unless they're demented, which happens often. There's a sort of pleasant dementia that happens to some of our patients, where they don't really know what's happening to them. That's almost better, in a way, than someone who's got their mind totally together, and they understand what's happening to them. They may be angry, but a lot of times it comes out as depression. I'm very sensitive to that. I talk about it with all of my patients if I notice that they seem sad or blue. I ask them what kind of support they have from their families, ... if they have people coming to visit them, if they feel lonely.
A lot of times they'll be reticent to talk about it. They don't want to talk about it, because especially in the older population, there's a stigma attached to anything that sounds psychological. If you say, "How is your mood?," they might say, "Mm, I'm OK," but if you say, "Are you depressed?," "Oh, no, no, no, I'm not depressed." But you can kind of feel it. Then eventually sometimes they will talk about it after they've seen you a few times, after they start to get comfortable with you, and then we can treat it.
That's the next step, convincing them that they need to take yet another medication, which many of them feel they're already taking too many. If you say to them, "There is a medication that might be able to help you not feel so blue," sometimes they resist, because they don't want to take another medication.
Yet so many have a reason to be blue.
Absolutely. Often it comes from the fact that many of their friends have died, or their spouse, their peers, their sisters and brothers. They may be the only one left. If they don't have children that come and visit them, it's very hard. And they don't want to ask; they don't want to bother people. So they're very much alone.
They become really attached to people like me. I'm a total stranger when I walk in the door, but it's often hard for me to finish a visit and leave, because they just want to talk; they want somebody there. ... And some of these caregivers -- a home attendant or a home health aide -- are just incredible people. They become attached to the patient in a way that it's almost like a mother-daughter or father-son kind of relationship.
Are most elderly being cared for by hired caregivers or family support?
In our patient group, we have mostly people that are being taken care of by paid people. That's not to say that they don't have family and that their family doesn't help, but most of the time they have to work, so they can't be there all the time.
What level of care is required to keep somebody at home? A heavy burden?
Yes. ... I have one patient's daughter who takes care of her father 24/7. She has people in the house but oversees everything. She doesn't leave anything undone, because she's worried about him all the time. And when you ask her, she says: "Oh, it's no big deal. He's my father. I do it because I love him."
Then if you ask someone else who has their grandmother at home and needs her medicine put in a box once a week: "I'm not interested. You're the nurse. You do it." There's a very different sense between people of what their feeling is about it.
But in general, if a person is really sick and debilitated, taking care of them is a very hard job. It's physical. You have to often turn them over, pull them up, transfer them from a bed to a chair and things like that. Sometimes you have to feed them. So you have to think about what you're giving them to eat, what kind of form they can take it in, make sure they get it into their system without choking or something; bathing them, brushing their teeth, brushing their hair.
Sometimes older people are kind of cranky. They don't want to be bothered, and they don't want people touching them and fussing over them, so that makes it even more difficult. It just depends.
Why the crisis in caregivers for the elderly?
Nursing can be considered a burnout job because it's so complex. It involves your whole self if you do it right. It's not only physical, because you have to drag a heavy bag around and walk up stairs and climb around on a bed and turn people over -- there's a lot of bending and things like that -- but it's also emotionally draining. There are times when you can't help somebody, and it really can get to you. You think about it in the evening; you think about it when you're in the shower in the morning: How could I have done this better? Maybe I'll try this tomorrow. It's not the kind of thing you can just turn off.
Also, there is a lot of, I like to call it "yucky stuff." You're not just standing at the bedside taking somebody's blood pressure. You have to get in there and take care of a wound. Sometimes it smells bad, or it looks horrible. The person might be crying or trying to hit you even -- I've had that happen -- because it hurts. Then there's all these bodily fluids that get involved. These things are part of taking care of a sick person, but not everybody realizes that.
That's why family caregivers sometimes get freaked out. They don't want to go to that level with whoever there is in that bed, their loved one. I've had people in the room try to support the patient while we're doing a certain procedure, and all of a sudden I see them turning green, and they're out of there. They can't take it anymore.
Can you talk about the changes, the new world of technology and medical treatment for the elderly?
We have so many medical procedures now and interventions that we didn't have before, so people are living a lot longer. I see patients having things done to prolong their lives where they might not have had it in the past, and they might not have wanted it either, if they had been given a choice. It can be sad sometimes.
Sometimes we as caregivers talk about how it would almost be better for a certain person to pass and to just go, because that's what they really want, or they're suffering so much that you really don't see the point. There's no quality of life for them. They don't seem to be enjoying any minute of their day.
But it's incredible how everyone sees that differently, caregivers and patients alike. The family is desperate to keep someone alive, even though to me it looks like there's not much of a future for this person. But the family still gets a lot out of the connection that they have. Even if they just happen to look their way that day, they say: "Wow, look, he's getting better. He looked at me." You can't dispute that that's important. That's really important.
What are you seeing generally among the patients you are dealing with?
It's mostly degenerative-type things -- heart, lung, arthritis, diabetes sometimes. A lot of times it's pain associated with either cardiovascular disease or they have a heart problem; they get palpitations, or they get stabbing pain, angina or sometimes they get pains in their legs so they're not able to walk anymore.
The arthritis affects the whole body. That's a very tough one, because it's hard to medicate the person enough so that they don't have pain, but not have them be drugged out and wobbly on their feet and everything.
Then the other thing is the breathing problems. If a person was a smoker or was exposed to toxic things, they oftentimes develop breathing problems.
A lot of what happens in the older population is having to do with balance, too. Sometimes they're just not able to get up because they feel dizzy, because they take medications, or their blood pressure makes them have different symptoms, so it's hard for them to move around.
Are most of them on lots of medicines?
I would say, on average, a person who's got several different illnesses and is maybe in their 80s or something could be on 10 to 15 different medicines a day, sometimes three and four times a day. But they often get confused about which one is which, what they need it for. And they can't see, or they can't pick it up with their fingers, so they can't put it in a cup and be able to take it.
But then often they just get angry that they have to take all these medicines, and they ask me repeatedly, every visit, "Why am I taking all these medicines?"
The one that we all worry about most is falls, because if a person falls, it can set up a whole cascade of events that really can be devastating. First of all, they might break something, so they may end up having to go to the hospital. Once they go to the hospital, they're not under our control anymore. They're not in their own environment, so they can become despondent. They wouldn't have someone watching them like they would at home, necessarily. It's very disorienting for them because they don't have all their familiar surroundings. And after a person's fallen, they're much less likely to want to move around and do things, because they're afraid they're going to fall again.
The other [tipping point] is loss of a loved one. If a person is used to living with somebody and they die, that's a really big, big thing, because the person that left can often get sick and follow very close after the first person dies. If it's a man and wife, they may have spent a lot of years together, and they miss each other. Sisters, brothers -- you know, there are all different setups and families. Sometimes if the one person that's with them dies, it makes a big difference.
If they have a cardiac event, like a heart attack, that brings them to the hospital, that can also be really difficult and devastating for them.
Why struggle to keep people at home?
It's just so much healthier for them. It's so much better for a person to be at home generally. If they're there by themselves with no support, then that's not good. But if they have all the support they need, they're generally happier. When it comes to the everyday holding the hand and pouring the medicine and making sure they've had enough to eat today, that stuff, I think, is really handled better at home.
Over the years, has home care become more sophisticated?
Definitely, because people are being sent home from the hospital quicker and sicker, actually. The hospitals are not able to keep people in the hospital as long now because of insurance reasons, so they have to send them out, sometimes with intravenous medicines and feedings. And often there are really complex things going on that have to be done in the home. ...
A lot of family members feel overwhelmed. Their loved one is there with a piece of paper from the hospital, and they tell me, "This is what they told me to do, but I have no idea what this means." That's one of the biggest things we do, is teaching -- not only the patient, but the caregiver.
Without a primary caregiver at home, would a majority not be able to stay home?
There are quite a number of our patients who don't have family members or anybody like that in the home, but I guess then their primary caregiver would be their home health aide, the person who has the most contact with them during the day, who takes care of them. They would not be able to survive without that person, even for a couple of days.
I once had a lady that refused a home health aide. I kept trying to get her to take it, but she had sort of a paranoid aspect to her dementia. I kept trying and trying and never succeeded. One day I went to visit her and didn't get an answer, so I kept on banging on the door; eventually had to have the police come and break down the door. We found her in her bedroom, on the floor, and she had had a stroke or something two days earlier. If I hadn't gotten there that day, she would have been dead, because she was totally dehydrated and unable to help herself at all.
She was trying to hold on to her independence to the point where it really became unsafe for her. That was a really tough case. Eventually she did end up in a nursing home, because there was no way for her to live on her own after that.
It reaches a point that you do need increasing help; you can't live alone.
They're very much wanting to have their privacy, because it is sort of an invasion of their privacy to have all of us strangers coming and going. Sometimes people are actually living with them in another room. This is hard for people to get used to.
Sometimes we have to negotiate with them about allowing us to come in and give them help. They really fight it tooth and nail. We might convince them to have somebody just for a couple of hours, to come wash their back. Then eventually, once they get used to that person -- they're helping them into the shower, helping to wash their hair -- they get more used to it over time. But in the beginning, just making that introduction of a stranger to do all these really intimate things with you is a very tough sell for some of these older folks. They really want to continue to do it their way.
What are people most afraid of?
The thing that seems to trouble people most is pain; they're worried about having pain. ... It's a terrible thing to be in pain all the time. It really is, because you can't think about anything else. But to imagine living every minute of every day and not being able to sleep because you have pain is a really terrible, terrible thing.
I've known people that have had what you or I would probably consider excruciating pain, but yet they still smile when I come in, and they still tell me, "Oh, I'm fine." But then when you ask them to rate their pain -- that's one of the things we do -- "On a scale of 1 to 10, how would you say the pain is today?," and they answer you, "Well, I guess it's a 9," it really is amazing, because you didn't have any clues just by looking at them that they were dealing with that. But some people have just gotten used to it, and if you really ask them how they're feeling, and listen, you'll hear some amazing things.
This generation is stoic?
I have a few very vocal patients who tell me about every little thing that bothers them, but as a rule, I would say the majority of the older people tend to just kind of live with it. They don't complain much, and you really have to encourage them to talk, and to just be quiet with them for a while, and listen, and leave some space for them to talk to you. ...
I think sometimes they're afraid to say anything, because either you're going to give them another medication, or you might think that they're not able to live on their own anymore, or maybe you're in a hurry and you don't want to hear. These are the things that they might be thinking. Then sometimes they don't open up to you until you're almost out the door, and they say, "Oh, by the way," and then you have to say, "OK, tell me about that." It's very interesting.
What kind of intervention choices do you and your patients have to make?
... Life-and-death questions don't come up every minute, but we do have a lot of things that we do, like you might say: Why would an older person take vitamins? What's the point? But there is a point. If that person wants to continue to live the best they can until the end, they have to take vitamins, and they have to eat, and they have to have the right nutrition so that they don't suffer, and their skin doesn't break down, and they still have enough strength to walk to the bathroom.
These are all things that we do. We just assume that we're going to try to make this person as well as we can, unless they've said, "We don't want any interventions; we don't want to take any medications." But that's pretty rare.
Usually the instructions are: "If my heart stops beating, don't bring me back. But as long as I'm here, I'll take the vitamins, and I'll eat the food and do what I can."
The people that I've met have a very strong will to live, as long as they're still healthy enough to have some enjoyment out of life.
Even then, you might see a person in bed who is contracted, which means that their limbs are sort of frozen, and they can't speak; they may be getting artificial feedings, so forth and so on, but they still keep going. And you wonder, how does that happen? But there's some spark that keeps them here.
Do you consider it a failure when somebody has to go to a nursing home?
Not always. We all try to resist sending anyone out of their home unless it's medically necessary. But I had a patient who I cared for for a while. She and I became very close. ... I felt that she was really unsafe at home. In a way, it broke my heart, but I worked with the doctor and social worker to get her to go to a specific nursing home that we hand-picked because we felt it would be the best place for her to get some rehab, to build up her strength in order for her to be safe at home so that she wouldn't keep falling and hurting herself.
That ended up being a success story, because she did go to the nursing home, and she ended up getting the rehabilitation she needed. Now she's home, and she's living on her own. She's got actually more support, because she has a home attendant for more hours. So she's doing well.
So it's not always a bad thing. But in my business, we tend to try to keep people out of institutions because they don't get the physical attention that they might get at home, and also they sometimes just become too sad. They lose their will to live if you take them out of what they know.
Well, I've worked in nursing homes. I don't ever want to be in a nursing home as a patient -- not that they're all bad, but the personal care and touch is lost in a nursing home or a hospital or someplace outside of your own home.
The thing that I hear most from people is, it's a place you go to die. That's the stigma that's attached to nursing homes most often, is that if you don't have anybody and your family doesn't care about you, you're going to end up in a nursing home. That's not always true. A lot of people have to put their loved one into the nursing home because they just really can't manage them at home. There are some very, very good places that take care of patients, but generally speaking, I don't want my patients to go to the nursing home. I try not to have them go there at all.
For many, it is usually the last stop?
It often is, yeah, because once they go there, all kinds of things can happen. If they go there for a fall, they can have another fall while they're in there. Or if they're left in the bed too long and no one changes them, they can end up getting a bedsore or pressure ulcer, and then that could lead to an infection, and then that could be the end. These are the worst-case scenarios. This doesn't happen all the time, but it happens pretty frequently that people get new problems when they go to a nursing home.
... There's that institutional feeling, the feeling that everything is kind of homogenized and just based on the bottom-line tasks of what have to be done, instead of the comfort stuff that's around when you go into someone's apartment. You see the pictures of them and pictures of their family and the various stuff that they've collected in their lives. It's a much different feeling than you get in a nursing home.
Then there are all these strange noises and strange people, and it's very hard to feel comfortable in a place like that, especially if you're older. You may not be able to hear well, or you might not be able to see well, and noises and confusion upset you. These things can be traumatizing to an older person.
There have been many times when we had a patient that was near death, and we could have gotten more aggressive with antibiotics or whatever and maybe prolonged their leaving. But in some ways, that's not always the best approach, because if they've made it clear that they don't want to be kept around by aggressive measures, then a good death for that person would be to go out as gently as possible. So sometimes [if] it's clear that that's what they want, then all we do is medicate them for pain and keep them from feeling pain.
There are other things that happen, too, when someone's nearing death. They may suddenly become very anxious and start breathing really quickly. We can give them medications to help with that so that they don't feel that anxiety, almost like their lungs are filling with fluid, or whatever it is.
I feel that the team that we're working with now is very, very good in hospice care and end-of-life care. All the doctors are really good with that. They're very responsive. And we work with the family. We guide everybody through the process, making sure they understand what's ahead for them. Even something as simple as making arrangements at a funeral home, so that when the person does pass, they don't have to call 911 and get the police and the fire department [to come] -- they don't have to do that. They call our doctors; they pronounce the person dead, and then the funeral home comes and collects the body. Everything is taken care of.
Our goal is to make whatever time the person has left be the best and most comfortable that it can be. Oftentimes we're not talking about cure, because a lot of these things have been going on for years and years and years, and they're never going to go away. But what we can do is try to minimize the effects of whatever the illness is so that the person can not put it aside, but can live with it to the point where they can still enjoy the time that they have.
Then when it gets to the point where they are going to die, and it's clear that that's the direction, then we all get onboard with trying to make that happen in the best way for that person, always keeping in mind what it is that they wanted to do, what it is that they wished for.
It doesn't always work out the perfect way that we want it to work out, but I've felt very, very good about some of the people that we've helped achieve that goal in the end; in other words, dying the way they wanted to die -- at home, at peace, with their family.
Without you and the team, what would it be like?
It would be a lot harder for them. Sometimes family may have a plan; the ill person may have spelled out what they wanted, but then at the last minute the family can't bring [themselves] to -- they can't do it because they get nervous. They've said to me things like, "Well, if I give my mother this amount of Roxanol, won't I be killing her?" Roxanol is a liquid morphine. And we have to explain, no, that's not killing her; that we're just giving it to her to help her be calm, to help her not feel pain.
It's hard for family to understand that when a person is nearing death, they may not want to eat or drink. They may just totally stop eating and drinking. On several visits, I've had to explain to them how they should not try to feed her chicken soup, because it's really to make them feel better -- they think this person must be starving; they must feel hungry. Most of the time they don't. They don't know. They don't feel that; they don't feel hunger. Their body is shutting down. It's very hard for the family to understand that.
What happened would be that they would sometimes rush the person to the hospital at the last minute, because their anxiety would get the better of them, and they would forget what their goal is. So they need sometimes our team just to coach them through the process until the person actually does die.
There are a lot of levels to that. Certainly the best scenario would be to have someone personally who loves you, who can take care of you. But outside of that, we all as a society need to wake up and think more about how we can effect change in our whole system to try to get better care for people who are aging, because I think home care is getting better, much more diverse and more in-depth than it was even five or 10 years ago. But we still have a long way to go. We all need to work on that -- start thinking about what is going to happen.
I don't have kids, for instance. Some people feel that their kids are their ace in the hole; they'll take care of them. It's not always the case. But I really seriously have to think about what's going to happen to me when I get older. It's kind of a scary question. I think we all want to postpone it. I know I don't really want to think about it right now, but I'm faced with it every day, because I see it in my work. It makes me think about what's going to happen to my mom. She's still healthy, thank God, and working, but we don't really have a big plan set up. So this is something that we all have to think about.
What will you do with your own parents? What's acceptable or 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.
Age is the final equalizer for everyone, from the projects to Park Avenue. No one is protected.
Absolutely. In fact, you could take Mrs. Enoch out of that apartment and put her in a bed in the projects, and she would look almost exactly the same as some of the older people that I take care of there. They have the same needs, and the same things have to be done to make sure that they survive and that they're being taken care of.
It doesn't matter what kind of life she led and where she was, because in the end, we all need the same thing. But it boils down to the basic needs of life in the end, and however that gets delivered or taken care of is pretty much the same from place to place, no matter who you are.
The best to hope for is it's done by somebody who knows and loves them?
A caring person, whether it be a family member or somebody that's paid to do that job. At least if they care about you, you know that they're going to do it with tenderness and with some love.
I've seen both sides -- people that just do the job because they have to, and they don't really care about who that person is. They'll have conversations over them and don't even address them. They act like it's not even a person there. And then you have the flip side, where every single step of the way they're considering what that person needs in terms of comfort and care.
The best scenario would be a loved one, but it doesn't matter. Mrs. Enoch's people are paid to do that job, but it's like she's their grandmother or their mother, they take such good care of her. They love her. They do.
That's the best hope?