Aging at Home – Then and Now

https://wellcomeimages.org/indexplus/image/V0016079.htmlWellcome Collection gallery (2018-03-22): https://wellcomecollection.org/works/jx754ejq CC-BY-4.0, CC BY 4.0, https://commons.wikimedia.org/w/index.php?curid=36499850

What’s our history of aging at home and what kind of caregiving will we need today? How can we make the home a creative stage set for the last third of life?   In this podcast we talk with Peggy Flynn, founder of The Good Death Institute and author of The Caregiving Zone, a radically honest—and indispensable—book about the challenges faced by everyone who plans to grow old at home and by their families and loved ones. 

Listen to our podcast—or read the full transcript below. 

Welcome to Reinventing Home, a podcast about home as sanctuary.  I’m your host Valerie Andrews and today we’re going to talk about an increasingly important topic— the prospect of growing old at home. 

In this podcast we’ll consider the nuts and bolts of caregiving—and the importance of directing your own story in the last years of your life.  

Our guide to this discussion is Peggy Flynn, founder of The Good Death Institute, and author of The Caregiving Zone. Peggy is also a spiritual director, specializing in opportunities for growth in the evening of life. There’s no one better to lead us through this topic with grace and good humor. Peg, thanks for joining us today.

Peggy: Well, you’re welcome. How much time do we have?

Valerie: For the endless topic?

Peggy: For the endless topic. I was thinking about this in terms of your work around home, and one of the things I hear most often is, “I want to stay home.” It’s called Aging in Place. People will say things like, “They’re going to carry me out of here, feet first.” And there’s a couple of things that come to mind. Number one is that, for a lot of reasons, but partly due to Covid, a lot of nursing homes are closing. 

People talk about, “I want to age at home,” “I never want to leave my home.” And then, “I don’t want to go to a nursing home.” The fact is that for many people, nursing homes are not an option. Number one, they’re very expensive. And number two, more and more are going out of business.  So people will be aging at home. They will be aging at home, and they will be dying at home. Home becomes, as we age, an independent living place, it becomes assisted living, it then becomes the nursing home, and then eventually it becomes the hospice. Because that’s the trajectory of aging, which is, needing more and more services until the very end.

Valerie: This fits in really well with our current issue, which is about the life cycle in the home, but before we get into this, I want to ask you how you came to this work.

Peggy: Well, it wasn’t something I put in my high school yearbook!

It’s been mostly people coming to me, or finding myself with friends and neighbors and family, where the situation was upon us, and it was really necessary to get some training and some skills. And then as I got training, then I was able to be a better neighbor and family member.

Photo by Andre Ouellet on Unsplash

Valerie:  You speak in The Caregiving Zone about your father showing up on your doorstep, and that sounds like what we call boot camp training in the topic.

Peggy: I’m the oldest girl in an Irish family, so I knew that whichever one of my parents went first, I would get the other one. So I had worked it out years before it happened. And I went through a whole process around money and values, around caregiving, around loyalty. So that when the situation manifested, and he had surgery, he called me from the recovery room after an operation—how he remembered my phone number, I have no idea—but he called me from recovery and said, “I can’t go through this by myself.”

The good thing was because I knew what was going to be coming down the pike, I had prepared. So I was able to work with him. It was supposed to be six months, it ended up being three and a half years. So, bootcamp lasted a long time.

Valerie: Well, what I love about your book is that you really give us a sense of what the territory ahead is going to look like. And one of the things we have to contend with are all the great unknowns. What was supposed to be six months, turned out to be three and a half years.

Peggy: Yeah, it’s the many unknowns, but also the knowns. And what I found working with families was that most of the trouble came because people weren’t looking at facts, facing up to  the finances. They were having this plan that was kind of like a Cadillac plan, but there was only enough money for a Volkswagen plan.

So, how to tell the truth about that right from the get-go. When people say, “Well, I don’t want go to a nursing home.” I’m like, “You can’t afford a nursing home, so take that off the table.” Let’s get all that emotion out of the discussion, then we’ve got to deal with the resources that we have. So, facing facts is such a big thing. And families are often facts-free zones.

Valerie: They run on a gasoline of emotion.

Peggy: Emotion, but also distortion and wishes and wanna-bes and if-onlys. So I think one of the first things is facing facts, and… And again, it comes back to talking about your home. What are the facts of home? And then, real simple basic things: Stairs, throw rugs. Are the doorways wide enough? So that whole thing, I find that relaxing. Many people find all that to be way too challenging, but I find that very relaxing.

Valerie: The caregiving zone is so fraught emotionally. Siblings often argue over who’s more worthy to take care of Dad or Mom.” And older people wonder, “How am I going plan for my own aging when I’m really terrified?”  Getting out of the emotion and doing something really concrete— that sounds like it’s a real relief for people—if you can get them there.

Peggy: Literally if you can get them there. There’s so much in families that is unresolved. Then, all of a sudden, there is a fact that cannot be ignored. We’re all experts in ignoring reality, but then when some realities present themselves that cannot be ignored, we’re often what Rita Mae Brown used to describe as, “Humans are volcanoes, spewing emotional debris through a rational crust.” All that debris can come to the surface. And so one of the things I recommend for people is bring in an outsider who is not part of the family drama, to be the presenter of the facts.

And keep presenting the facts, applying Maslow’s hierarchy of needs. Food, shelter, clothing, social, intellectual, heart, creativity, spirituality. Really looking at: What are the facts around those realities as present in this particular home? And so one of the things is how to bring it from the general, or whatever, to the specifics of this particular address in this particular town, this particular street, because this is where it’s going to happen. The more I work on this, the where of things is really important.

Flynn has adapted Maslow's hierarchy of needs to the house---the bathroom is the place for hygiene, the kitchen for n ourishment, the bedroom for rest, and the living room for socializing and a sense of community and belonging. In the evening of life, home becomes a stage set and each person a producer/direactor of the story of their own life.

Valerie: Let’s consider this model and talk about the role of every room in this hierarchy of needs. I know you’ve given a lot of thought to this. Where do you begin?

Peggy: I begin with the bathroom. That’s where hygiene takes place, that’s where the bowel function takes place. Is the bathroom safe? Is the bathroom adequate? Real specifics: Raised toilet seats, grab bars. Do you have those things in the bathtub that prevent slippage? If the bathroom doesn’t work, if the bathroom is not adequate, or if for example, somebody lives in a two-storey home and the real bathroom is up on the second floor, and they can’t navigate the stairs, then that’s an issue. So that becomes the first thing to be thinking about. The second thing I think about is the kitchen. Does everything in the kitchen work? Is everything accessible, as in reaching? Is the freezer big enough to hold enough meals that someone wouldn’t have to cook if they weren’t able to. So food, shelter, clothing, bathroom, kitchen, bedroom.

Valerie: And what about the bedroom? What do you look for to be changed, or converted, or made more comfortable there?

Peggy: Well, the bedroom is really interesting, because it’s associated with so many different things. This gets into the whole thing of moving along the continuum of care in terms of equipment. For a long time, whatever your bed is—a single, double, whatever your bed is—this could probably be fine. But as a person’s needs for care increase, they may need to bring in a hospital bed, for example. Or it may be that the bedroom is dark, the bedroom is kind of tucked away, and people will say, “You know, I don’t want to be stuck back there.” So maybe the living room at that point gets converted into the bedroom.

Valerie: That was going to be my next question.  What do you do about a sense of beauty and attractiveness—to make sure the place reflect a client’s personality and interests?

Peggy: I talked to you before about a friend of mine who had a terminal diagnosis, and she was really clear she did not want to die, did not want to be sick and have her last month, it would end up being six weeks back in her bedroom. She wanted to be in the living room—it was a beautiful craftsman house—and so, after we got the diagnosis, we went from the hospital, where we had gotten the final word, to the furniture store, because the sofa that she had there was inadequate. So we went and bought a new sofa. People could visit her, and she actually died on that sofa.

Valerie: And shopping for it was a joyful experience.

Peggy: We had fun. We had fun, because she was a fiber arts person, so she had a sense of texture. She knew what she wanted. She really got into the idea that this was going to be a stage set. This was her theater.

There’s a lot about aging and the whole process that is, that is theater, in the classic sense of the word. It’s a drama. And so, when you have a drama, you think stage set, you think costumes, you think props. And the props in this case, she did not want a hospital bed. She did not want anything that looked  “medical.” Eventually, she did need oxygen. But we found a sofa with a high enough back that all of the oxygen equipment could be behind the sofa. So when you walked into the living room, she was there on her sofa. 

Valerie: And she could hold court from there without looking compromised.

Peggy: This was how she had lived her life, and she wanted to have this be how her last six weeks would be. And so, I helped her set it up so that, basically, the home never became a medical unit.

Valerie: That’s beautiful.

Peggy: It was. I keep coming back to that whole idea that death is a drama. Illness, aging, dying, it’s all drama. So if you embrace it that way, then you can play with it, because you’re dealing with the facts of it, but then you take the facts and then you make something out of it.  You make a story out of it.

 

By Ann from Detroit - Katie, CC BY-SA 2.0, https://commons.wikimedia.org/w/index.php?curid=10389406

Valerie: That’s a beautiful example for our listeners who are in the Third Age, or the evening of life, and thinking about how they want to do things from now on. And the whole notion, “What is this last phase of life going to be about? And how can I make it creative, and communal, and still feel like I’m a part of it until that moment when I’m not?”

Peggy: Right, but the only way you could do it, is if you say “This is what’s happening.”

It’s also really important to know, what are your values? I am a fairly solitary person. And the worst thing for me to imagine would be that I would have all these people coming and going. This would not be my idea of a good time. This would not be in sync with how I live my life. Other people who are very social, that would be very appealing to them. So, it’s one of those things I like to say: “Well, what do I like? How do I live my life”?

But the best thing you can do, is do it when you’re well. Do it when you’re in pretty good shape. See how other people have done it and, say, “Okay, would I want that for myself?”  Then begin to talk to people about how you would want to do it.

I had one person I worked with where, he was really clear. He loved the composer Handel. So, my basic job in his last couple of weeks was DJ. I set it up, so when he was awake, we were playing Handel. So I DJ’ed Handel.

Some other people came in and said, “No, no, I don’t like that. Could we put something else on”? And I said, “No, this is what he wanted.” And that was my job, was to make sure that he, even as he slipped into a coma he got what he wanted. 

Another client loved Patsy Cline but we’re not going to go there, okay?

Valerie: What I love about what you do, Peg, is that you look at illness and aging from a really broad internal perspective. And, you find out what excites people and then you can lead them, or help them, to construct this next stage of the journey.

Do you have any other stories about people doing this transition creatively?

Peggy: I also talk about the dark side of this with people, when it’s denial, denial, denial, and there’s no plan. Then that’s where everybody gets exhausted. When no one will admit what’s happening, or are afraid to admit what’s happening, one of the first casualties, is good care for the person who’s ill.

Sometimes the best person for home care, care for the dying at home, is going be a hospice service. You have access to a nurse. You have access to trained home health people, etcetera. So postponing dealing with it, means that, for that time that you’re getting sicker and sicker, the people taking care of you are not trained. I’ve known people who basically died of cancer, taking Tylenol, because…

Valerie:…there was no on one who could prescribe pain medication.

Peggy:  Right, there was no one there that could write that kind of prescription. And so, the denial, it can have really serious consequences.

I’ve seen caregivers get injured, because they’re trying to change a person laying in a bed, or getting them out of the bed, or whatever, when what they needed was a hospital bed. What they needed was to be able to have a commode in the room. So, there can be real negative consequences to denial for both the person in care, but also to the people around them. And a lot of that can be avoided. So that’s the dark side. I think, the positive things I’ve seen have been where everybody sat down and said, “This is what’s happening.”

Image courtesy of The Wellcome Trust.

Valerie: Let’s talk about how we’ve dealt with death in the past. For a while, I lived in an old stone farmhouse in the Hudson Valley that dated back to 1790, and it had a dying room on the first floor–and a front door large enough to get the casket in. In those days, the wake was usually held in the dining room. And illness, death, and dying were a part of daily life. So, are we headed back in that direction, and do we need to re-educate ourselves?

Peggy: I think we are heading back in that direction—tragically, in many ways, because there isn’t an extended family to support the process, and that’s going to be the challenge. With that house you’re describing probably most of the family lived within 10 miles.  So there was an extended group that was supporting the person who was ill, and aging, and dying, and then there were the three or four people that were doing most of the care.

But yeah, I think it’s a very rude awakening for many people to, all of a sudden, realize, “Oh, it’s going to happen here. Oh, there is no nursing home I can afford. Oh, when they say hospice they’re saying someone’s going come to your home, and that by the way is basically 12 hours a week.” 

 

Valerie: And what kind of stress does that mean for caregivers today?

Peggy: Sometimes you can’t take it on. This is what I mean by telling the truth. I mean and the term for it now is “the squeeze generation,” where it’s women who’ve got parents in their 80s and 90s, and then they’ve got growing children, and they’re working, then think, “Okay, now can I take this on.”

It sounds very Norman Rockwell or The Waltons to say, “Okay, Dad, you can move in with us. We’ve got the room.” But how could people know, what kind of time it takes to provide personal care, to provide regular meals for someone who is increasingly dependent. And so what can look like generosity can really blow up in the family’s face.

It’s very hard to say no, it’s very hard.  But with my dad I was really clear. I knew he and I could not live together, so I got him an apartment in the same building I was living in.

In some way the dying part is the easy part. That last six weeks you can do on adrenalin, the last few months you could do that on adrenalin. You know that, I know that. But it’s the years preceding that, of increasing dependence, that you can’t do on adrenalin. That’s a marathon, and that means negotiating at every point that the situation of decline shifts to a new low.

I’ll give you an example: When it’s time to stop driving, when stairs are no longer a possibility, when the person can no longer cook for themselves, when their cognitive decline creates a not safe space. How do you check in on all those marker events and change the care plan accordingly?

In the best of situations, you can negotiate all that, but that means you’re working with somebody who will negotiate with you in good faith. Often between parents and children that is not there. So that’s a part of the stress I mean when dad says, “I can still drive I’m fine” or, “There’s nothing wrong with my memory. You forgot to tell me that.” or “I don’t need hearing aids—if you just would stop mumbling.”

Those are the kinds of things that I think our generation is going to be coming up against, but better to have those conversations when everybody’s well.

A lot of us will be doing peer caregiving, where we’re going to be taking care of our friends who are our own age, and so that’s a whole different negotiation structure—easier in some ways and harder in others.

Start the conversaion about aging early. Talking about your wishes with your peers and asking for feedback as you age is key, says Flynn. Photo by Ravi Patel on Unsplash

Valerie: I totally agree.  My women’s group has made a pact that we will tell each other when we are starting to repeat ourselves, when the memory starts to slip, and that we will basically be conscious observers of one another’s aging process, and give real honest feedback. And I don’t think there is any substitute for forming that kind of a group and forming it early on.

Peggy: But it’s also learning how to receive care, learning how to accept care, that’s a whole skill set. I mean speaking as a caregiver, I’m good at giving care, I’d give myself an A, but in receiving care, I’d give myself a C. It’s a challenge to receive, it’s a challenge to be dependent, so what I say to people is, “Practice being dependent before you are dependent.”

Valerie: I have a friend whose mother is in a very good nursing home, and she went through a bumpy time.  Now she has settled in to a place where she just continually thanks her caregivers. She has found a place of total gratitude, and everybody loves to be with this woman because she just says, “Thank you so much for taking such good care of me.”

Peggy:  If it comes from an authentic place, then everyone is blessed.

I think that what you’re describing, you can start that today. Like being grateful to the store clerk.  I just had an experience: I was taking the bus over to a meeting, and the bus was coming and the stop was three-quarters of a block away. And it’s one of our first cold days, so the wind chill factor was 21 degrees, and I waved to the bus (driver), kind of like, “Wait for me.” And she pulled up right there. I thanked her very, very much, because otherwise I would be standing there for 10 minutes or so, in 21 degree temperature, with the wind coming off Lake Michigan.

I think that that whole thing of living in gratitude gives resilience. It’s like brake pads on your car. When the brake pads go, every time you press the brakes you get that squealing noise. And so part of the thing around gratitude, accepting reality. What this does is it just creates brake pads. It just creates resilience, so that as these things happen that are hard, really hard, at least you have some way to cushion the blow, and to say, “Okay, I can adapt.”

I remember years and years ago, I was in college and I was earning money on the side by doing home care. And I was out in the country in the South Bay, in Santa Cruz, California. And I would drive to these different places. And there was this stretch of road, it probably was like four miles, and I had four clients, all elderly women, living alone in their houses.

I was often the only person they saw from one end of the week to the next. So of course, they would be just holding on, literally holding on. Their loneliness was… It was palpable. It was like a second person in the room, their loneliness. And one of the women who was more approachable, I said to her, “All of you on this road… What if you moved in together?” And every one of them said exactly the same thing, “I cannot have another woman in my kitchen.”

I looked at how I lived, and I thought, “Boy, that’s me too.” And I thought, “Okay, Peg, from now on, women are totally invited into the kitchen.” And it shifted from, “my kitchen,” to “the kitchen.”  So that’s what I mean about really expanding the boundaries, looking at resistances, and saying, “Okay, I need to change.”

Valerie: I love what you’re saying right now, because you’re bringing up this whole notion that when we come into the evening of life with the right attitude, there are gifts. And if we just move beyond what we call ‘the organ recital’ and the big focus on our frailties, to a place of gratitude for what we still have in our lives and still are able to do, then it shifts, doesn’t it?

Peggy: Well, yes. First of all, people want to be around us, you know what I mean? And that’s an important thing. We need other people. So it’s our job to make it be easier for people to be around us. That’s really important. Then, I think the willingness to be pleased.

I had a client once; she was in her 90s. She was in cognitive decline. Her daughter had a hard time being at the hospital with her for a lot of reasons; mostly because she just loved her mother so much, it tore her up inside to see her mother like that. And so we had an agreement that if Alma went to the hospital, I would go with her. So at this point, I’m at the hospital and the doctor comes in and says to me, “Now, who are you?” And I said, “I’m a friend of the family and a friend of Alma’s” And so he said, “Now, Alma, is it okay that she’s here? Do you know who this is?” And Alma looked at him with her blue eyes, and she looked at him and she said, “I don’t know who she is anymore, but every time I need her, she comes.”

We built that relationship over years, and every time she needed me, I came. There was a bond, even though in terms of cognition, she didn’t know who I was anymore.

I want to come back to this thing around home. We are creatures of home. Home is everything. “What are the five basic elements that make home a home for me?” It’s not the same for everybody. And then to be able to communicate that and say, “You know, this is what home is for me. Home is these five things.” Then it makes it easy, especially if you have to move, to create an environment where those five things are present.

Valerie: It really gets back to the heart of the matter of What is home for each one of us? It is so individual, it is so different. And how can we always have that sense of home no matter where we are and what age we are? 

Peggy: And no matter what the level of cognitive presence or absence.

When I was training home health workers, I was working with this agency, and one of the things we learned was that if the caregivers brought their food which might be very different from the food that the person in care was accustomed to having around, then the person would say, “Well, this isn’t my house.”

Because it doesn’t smell like your house. And that sense of smell is the oldest sense for a mammal.  Why? When the little baby mammal is born, it’s gotta find the nipple, right? It’s got to find the milk. That’s the oldest sense—the only sense we’re born with that’s fully formed. So one of the things we say, for example, is okay, keep apple pies in the freezer. And if the person gets agitated, put a pie in the oven, and the house will fill with that scent which will immediately calm the person. When someone says, “This isn’t my home,” they’re telling you something. “It doesn’t smell like my home. That’s not my music.”

When I was doing end-stage care, and sometimes I would just be meeting a person the last few days of their lives, and maybe they could communicate and maybe they couldn’t, one of the things I did was to look in their kitchen and also look in their bookcase and look at their music collection. And that would tell me a lot about the person and what was home for them, so that I would not bring something in that wouldn’t fit. One of the things I ask is, “What are those five things that are home for you?” And then tell people. Tell people, “If I lose my marbles, “Here’s my music. Here’s what I like to eat. Here’s what will just be very agitating for me, very, very disruptive. And here’s what will comfort me.”

One psychologist I work with uses the expression, “Equanimity is in direct proportion to our ability to feel comfort.” Well, equanimity is, in the aging process,  in direct proportion to others’ ability to comfort us, so we need to tell them.

One time I went to this person’s house to do a massage. And the guy met me at the door, and he was just in a state. He was totally freaked out and almost in tears. And for a man to get to that place, that’s pretty major. And I said, “What’s the matter?” And he said, “My worst nightmare was that I would get sick and lose my mind. Well, I’m losing my mind, I cannot find anything. And I think I put something some place and then it’s not there.”

It can be as simple as folding towels a certain way. By HanSangYoon - Own work, CC BY-SA 4.0, https://commons.wikimedia.org/w/index.php?curid=48893467

It’s a whole litany, right?

And I said, Okay, first of all, I know you, you’re not losing your mind. Something else is going on here.” I looked at him and I said, “Tell me, are you on any new meds?” He said, “No, no, no.” I said, “Well, walk me through your house. He walked me through, and he said, “See, I didn’t move this!”

Well, it turned out that he’d had four different home care people come in. A couple of them volunteers, people who loved him. But everybody would do the laundry, do the dishes, go to the store, and then they would put things back where they would normally put things.

Every time somebody came in, they’d fold the clothes the way they fold the clothes. They put the groceries where they would have put the groceries. So I said, “Let’s go through and fix your apartment, your cabinets. Let’s get them the way you want them. Let’s fold the towels. So we refolded everything, put everything the way he had had it to begin with, and then I put notes on every cabinet, “Please do it exactly this way.”

Valerie: To preserve our sense of home, is to preserve our sanity.

Peggy: But also, we all have our accustomed ways. And that’s an old-fashioned term that I love, but part of it, so really caring for another person, is go into their place, and see how they do things. Now, I know that the way I fold towels is the best way. In fact, everyone should fold towels the way I fold towels. But we have to expand our awareness and get a little more flexible. Fold towels, fold t-shirts the way the person is accustomed to having it done.

Home is an event. Again, I come back to this thing around drama, and theater, and stage. If we look at the person who we are trying to care for, if we look at them as the director, producer/director, then we are going to take that direction. But if I come in there and it’s like, “I’m here to save you” and “I’m here to show you the error of your ways”, or whatever, then I’m not going to take direction. Do you know what I’m saying?

Valerie: I know exactly what you’re saying. If you come in and take charge, you’re running your own hero’s journey, and it has nothing to do with the person who’s looking for home and sanctuary.

Peggy: Exactly, because caregiving is not a hero’s journey. It’s not. It really isn’t. The hero’s journey is the person who’s dealing with their third of life issues. That’s their hero’s journey. So, are you there to support them on their hero’s journey, or are you there to usurp it and have your own drama.

Consciousness has nothing to do with cognition. Those are two different things. That’s why the story about Alma is so important. Her cognition was shot, but her conscious awareness was flourishing.

Valerie: That’s a beautiful distinction.

Peggy: Yeah, and it’s a really crucial one, because we’re so intellectually, we’re so in the left brain—we’re so in that hyper-rationality, that we tend to neglect, or actually, or even despise every other form of conscious awareness.

Cognition, yeah, it’s really, it is important. People have to be safe, but there are so many ways to play with it, and have very truthful encounters.

But again,  I keep coming back to this: There’s home in your body. There’s home in your environment. There is home in your relationship network. It’s one of the reasons I admire your work so much, because the thing around a home,  that’s like bedrock. And it’s not just humans. It’s living creatures. Just think of a beehive, right?

Valerie: We have 1000 other words to use when we describe home for other species, and in the environment, and we need to get back to this basic understanding of our home today. I thank you so much for this explanation of why this is so important in the aging process. This is rich, beautiful, poetic, creative and at the same time, really down-to-earth.

Peggy: Good.

Valerie:  I want to encourage our listeners just to go to your website, In the Evening of Life, and learn more about your important work, and how to create a loving space for ourselves and our family members in the third stage of life.  What you’re doing is so important, and I can’t thank you enough for being here, and sharing your work with us today.

Peggy: Can I say one more thing?

Valerie: Absolutely.

Peggy:  In this whole conversation, if you’ll notice, we did not talk about money. Everything we were talking about had nothing to do with money. It’s about relationships, and paying attention, and caring. Isn’t that amazing?

Valerie: That’s a wonderful coda. Thank you so much, Peg. That was a beautiful talk.

Learn more about Peggy Flynn, her work on caregiving and aging at home, and ways you can direct your own story, at In the Evening of Life.  Highly recommended: Flynn’s book, In the Caregiving Zone. 

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