EPISODE TRANSCRIPT

Have you ever stopped to think about yourself and your story? If someone were to write your memoir what would it say? We all seek some level of authenticity but have trouble removing the labels and finding our whole story. Welcome to Dropping In with Diane Dewey. In this program we’ll explore diverse stories on identity to help determine what is truly yours. Now here is your host Diane Dewey.

What’s the story behind the story? We’ll find out on Dropping In. Our guests are today’s original thinkers. Conversations that spark new ways of seeing what’s going on. We bring it all to the table. Diverse perspectives, controversy, loving and singular voices. Magically stories reveal the common threads that link us. Experience the joys, the fist pumps, the detours and the hard-won truths of those who blaze the trail so that we might do the same and now here’s your host Diane Dewey.

 

Diane: Welcome to Dropping In everyone. Wherever we are it seems that the hot summer days filled with sun and blue skies that we once knew have changed. We’ve got some nostalgia for what once was and that’s what happens as we age too and remember long lost times. Here to talk about it is an expert on senior care Iris Waichler whose book is called Role Reversal: How to Take Care of Yourself and Your Aging Parents published by She Writes Press. Welcome Iris. It’s great to have you with us.

 

Iris: It’s really wonderful to be with you Diane. Thank you.

 

Diane: I wanted to give a little background. Role Reversal is a comprehensive guide for the 45 million people currently taking care of family members who need assistance. I would argue that for some of us it’s those of us in our generation who are experiencing illnesses, chronic illnesses and require care. Certainly with Covid we’ve found there’s a lot more chronic suffering going on and loss. I think that this this book it’s written to help caregivers understand how to cope with and overcome overwhelming challenges faced by caregivers. Ms. Waichler shares her personal experience caring for her beloved father and his story with her 40 years of expertise as a patient advocate and clinical social worker.

 

The result is this book offering invaluable information on topics ranging from estate planning to grief, building a support network and finding the right type of care for your aging parent. Role Reversal: How to Take Care of Yourself and Your Aging Parents is the book. Iris, I noticed that in your subtitle you first mentioned taking care of yourself. How does that figure into the equation and why is it so hard for us to do that?

 

Iris: That’s a great question. I would say this Diane, one of the biggest mistakes that caregivers make is not taking care of themselves. A part of that is that the majority of caregivers 65% are women and women are notoriously bad at taking care of ourselves. What happens is we focus on other people and we ignore the signs that our body and our mind is telling us that thing aren’t going well. Caregivers start experiencing when they experience burnout and some of the symptoms of burnout are stomach conditions, trouble with sleep. Behaviorally we get more irritable, we get more angry, we get more short tempered.

 

What happened is interesting you mentioned the pandemic, what happened was that number from 45 million went up to 53 million. The average age of a caregiver went down. The younger folks stepped up. Also the part of that was because the people that were helping us be caregivers were not available to do it. The people that were caregivers might have gotten sick. Covid turned everything upside down in that sense. One of the other things that happened with Covid was it used to be 15% of caregivers reported symptoms of psychological or physical or emotional changes as a result of caregiving. And that number went up to 24%.

 

Diane: Sure and it’s entirely understandable you’ve got a different you know another layer of suffering and helplessness which is the reason that we do have trauma and burnout is because we’re helpless to really make a change or do anything that makes a substantive change. I’m glad to hear you supply these statistics because I had a feeling that things had grown exponentially this last year. I also think about the catch-22 of people, young people who are having children later in life. I know you wrote a book on infertility. Sometimes there’s issues with becoming pregnant. Therefore stating off pregnancy is necessary. There’s a sandwich.

 

There’s people who are literally taking care of kids and also taking care of elderly or even near contemporaries who have gotten ill. It really seems as though your book is a timely guide. I wondered if focusing on burnout is part of your work with your patients and how that has grown in terms of your practice.

 

Iris: Absolutely. I think burnout is as I said I think it’s universal. Some people are a little more attentive to themselves. It is a focus of what I talk about. I think another thing that happens is caregivers are really bad at saying no when the person they’re taking care of is a loved one or a parent. It can be really hard to say no our parents. If they ask us to do something that we know we can’t do we still do it knowing that we can’t. That’s one of the issues. The any other thing is for caregivers I think sometimes asking for help in some people it feels like there’s a sense of failure that you’re not able to do something you should be able to do.

 

People have such sometimes unrealistic expectations of what they think they can do. When those expectations fall short they feel guilty and they fail. There’s something wrong with me. When in fact lots of times things change in terms of the person you’re taking care of and the demands grow. They get different. You feel you can do it and everything changes. That happened with my dad. My dad was really, really healthy. He had pneumonia and then after he got pneumonia and he was in the hospital they found that he needed a pacemaker. Then he got a pacemaker and then they found that he had swallowing issues. That’s such a common scenario for people that are older.

 

There’s a symptom that happens or a diagnosis that occurs and it creates this cascade of other problems. It becomes so overwhelming for the caregivers and when you’re caregiver the other mistake that a lot of caregivers make is they don’t incorporate respite time which is just allowing themselves and giving themselves permission to take a break because that’s so important for the caregiver. It’s important for the person you’re taking care of because it’s that caregiver if you burn out or you feel physically or mentally ill then you can’t do the kind of caregiving job that you want to do.

 

Diane: Right it’s like oxygen first on the plane. Remember planes but when you have a child you put the oxygen mask on yourself first because you’re no good to the child. You’re no good to the person you’re caregiving unless you do mind yourself and your needs for rest and for just a mental break. I think it’s interesting what you were just saying about guilt because I think that is a huge component in not saying no. Also the sense of our generation I think we are much more used to the idea of being in control. I think we men or women I think we all think we should be able to affect things. We should be able to make a difference. We should be able to find a solution, find a cure, find this.

 

Then when you talk about this cascade that all just really brings it home in a way that it’s really hard to cope with. I also wanted to really talk about the difference between the generations. Your dad was a member of the great generation coined by Tom Brokaw. This is the generation prior to the baby boomers but it’s the generation who for whom self-sacrifice was a given, service to the country was a given and also just a sense of maybe not wanting to impose, not wanting to question authority around medical issues. How has it changed with the generation? I wonder if we’re better able or less able to cope.

 

Iris: That’s a great question as well and by the way I love your analogy about oxygen. I think that’s just perfect. I think one of the things that happening Covid turned things upside down. I think you’re right. That generation was all about self-sacrifice and there was a sense too that they handed down to certainly my mom and dad did that. We want something better for you. I do find differences when I talk to my 21 year old daughter about my life and about my parents’ lives. I think that generation is angry at those of in the sandwich generation. They feel that part of the reason things are happening in the world that are not good is because we didn’t step up. We weren’t honest. We weren’t aware of what was going on or we denied what was going on. I think they’re much more honest about that. I think there’s some anger from that generation that we didn’t do more.  They’re more eager to step in and step up and talk about things that bother them and can try to initiate change.

 

Diane: Well I was flabbergasted at how honest your dad was. Meanwhile you were the luckiest person alive Iris to have a dad that really made it to 97 without a lot of health issues but when it came time to talk to people in the nursing homes he went right ahead and said well, I’ve lost my wife. My wife died several years ago. I’ve got this woman Anne. She’s got to come. She’s got to be able to stay with us. The room has to be pretty sound proof because we might make some noise. You were mind-boggled by it but I also thought here is also to me an indicator of that generation not mincing words. Just spelling out what you need and not trying to dance around it.

 

I thought that his approach to his life, his issues, accepting your mother’s passing, it all seemed much more confrontational. More honest in a way. I mean confrontational in a way of just dealing with it. Just deal with it and get on with it. Not trying to compartmentalize things so that they don’t hurt as much. I think I you’re right. I think the way that we deal with things might be a little less forthright but your book Role Reversal is exceptionally head-on and methodical. Do you think the fact that it’s so easy to read and so factual and so giving you information that you need, practical information. Is that one of the reasons why it’s been such a success because you really have enjoyed a wide audience with this book? It seems as though it’s a guide that many of us need.

 

Iris: Thanks for your comment about my dad. I did feel like the luckiest person on Earth. He was an amazing guy. In an answer to your question when I was writing the book I originally was just going to write a memoir about him because as you said he was a member of the greatest generation but by society’s standards he was not exceptional in any way. He was a high school graduate. He was he was basically a junk man. He was a scrap metal dealer and in spite of that he took four kids and sent us to college and was loving father.

 

What I think one of the things that happened for me was when I was pitching my book to different publishers I got the response well you’re not famous. Your dad is not famous. People aren’t going to care about his story. That was a real worry for me but I also felt his story was one that would touch people. Much to my utter joy and amazement it did. I think a part of it is my book’s different because it includes his voice and mine. You get the dual perspective that I didn’t find in any other books when I was doing my research. I always do a lot of research before I write a book because it seems silly to write something that’s already been said. I like to find a unique angle.

 

Then what happened was I used my dad’s life. There are universal things for people that are caregivers for their parents as they age. I just used what happened with my dad’s life when he had a move into extended care when he got ill. I addressed that personally as his daughter but then I also addressed it professionally as a licensed clinical social worker for 40 years so I could give information to people about how to cope and very practical guide to what they can do as these crises and situations arise. I think that touched a lot of people. That’s the response that I’ve gotten from people. Some people had said they hadn’t found that anywhere else and that felt really great because I really believe in the power of words.

 

One of the goals in my writing, this is my third book and I really believed that if people are given information and it gives them a sense of empowerment and

They can survive situations that feel and like crises that feel overwhelming and they feel so alone. I want to take those feelings away. When I was working at the hospital, I was medical social worker in the rehabilitation unit. I was walking by one of my patients rooms one day and the family was outside the door just sobbing. I looked in the room and a resident was there just doing an EKG test. Just nothing. Just a standard test. There was no clinical symptoms or anything. I went over them and I said why are you upset. Why are you crying? The resident hadn’t taken two minutes to tell them what he was doing. They assumed because he was hooked up to that machine that he was dying.

 

That was a moment for me that I’ll never ever forget. I thought oh my God, if we just became a little more aware the pain and anxiety that people feel in crises can be overcome. From that experience I ended up writing my first book which was called Patient Power How to Have a Say During Your Hospital Stay. I’ve done that all the way through in my articles in my books. I wrote a book about infertility because I experienced that riding the infertility roller coaster.

 

Again a moment I’ll never forget. I got an email from a woman in Sri Lanka and she told me that her book, my book made her cry. My first reaction was oh no. Then she explained that no one in Sri Lanka talked about infertility. She felt totally isolated and alone. She felt after reading my book that she understood that what she felt was normal. The book gave her words to her feelings and helped her understand them and helped her cope. I think those were too incredibly valuable lessons for me.

 

Diane: It’s true Iris and you talk about the fact that you are an advocate, a patient advocate. At first the question becomes well why do we need an advocate. We’re supposed to be getting care. Aside from mistakes that happen and there is, there are human error in terms of doctors, nurses and all the personnel coming in contact with you or with your father when they’re in the hospital or my mom last year before she passed away but I think we’ve got just two minutes but I want to just ask you why do we need an advocate. Aren’t we supposed to be being taken care of?

 

Iris: Gosh, I wish that was true. I wish our health care system was perfect and that what we needed we could get and that we could all afford to have the top-notch care but as we all know that the reality of that is not true. I think Covid really highlighted that. They highlighted very large gaps in our system particularly on in terms of home care. We need an advocate because many times we’re so sick that we can’t advocate for ourselves that’s number one. Some of us are in denial about what we need or and what’s going on with us medically or emotionally or physically. Sometimes the diseases that we have affect our ability to assess that.

 

We need we need an objective, informed person who cares about us and wants to help us get the best possible care and treatment that we can. Just be there and stand by and fight for our rights and for what we need. I think that’s usually important but for people about caregiving why so many people burn out. If you break it down there’s so many pieces to it. There’s the physical care. There’s the emotional support. There’s the medical advocacy. There’s the getting shopping and taking care of your home and taking care of your physical needs and making sure that you’re healthy and you’re going to the doctor and that you’re getting your meds. There’s a whole host of different areas where a caregiver has to be an advocate.

 

Few of us have all of those skills which is why it’s really important in terms of caregiving to have more than one person on your team. There’s legal questions that need to be answered. There’s financial questions that need to be answered. It’s really important when you have a loved one that needs that help to have an advocacy team, someone that has knowledge about all of those areas so that they can make sure that you have the most optimal care.

 

Diane: Well Iris Waichler, we are really enjoying speaking with you. It’s a revelation I think to realize exactly how many moving parts there are to caregiving. As you say legal, medical, emotional, your own life that you have to keep maintaining. We’re going to take a break right now but when we come back we’re going to take a look at whether or not we are any different or this generation is any different when it comes to things like surrendering our independence. Don’t go away. We’ll be right back on Dropping In.

 

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She Writes Press is an independent publishing company founded for women writers everywhere. Together with sister company Spark Press serving men and women, it is both mission driven and community oriented. The aim is to serve writers who wish to maintain greater ownership and control of their projects while getting the highest quality editorial help possible, traditional distribution and an in-house marketing and publicity team. In 2019 She Writes Press was named Indie Publisher of the Year. You can find out more on shewritespress.com.

 

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Diane: Welcome back everyone. We’re here with Iris Waichler, author of Role Reversal: How to Take Care of Yourself and Your Aging Parents. Iris, I think it’s time for a little candor here as members of the baby boomer generation and even below us coming up millennials. I think we approach this with greater expectations maybe of care. Also expectations that we’re going to be able to do a certain kind of job. We’re harder on ourselves maybe. The other thing that I really wonder about and why I think it’s so brilliant that you did tie in your dad’s voice in this story is that none of us are quite prepared when a parent says to us oh, but I’m not ready to go into assisted living. Meanwhile they’ve just left the dinner from last night is burnt in the microwave. The car keys haven’t been able to be found and maybe shouldn’t be found. They’ve lost their wallet several times. They are not quite sure which day we’re on. It’s getting really, really unwieldy to help them in a way that is meaningful day in and day out.

 

They’ve got a line of pills Monday, Tuesday, Wednesday, Thursday AM, PM, can’t remember to take those. Yet when it comes time to broach the subject of well do you think you might be open to having more care. It’s always resistance. I guess this is a two-part question. You dealt with it yourself. What was your best method and second part is are we going to be any different? This I wonder.

 

Iris: For my daughter’s sake I hope not. I hope that I will be different. What you’re talking about is having the caregiver conversation. The whole notion of role reversal it’s so hard because it’s the issue of independence versus the need to have help. It’s the issue of parents denying their physical, mental and emotional abilities and it’s also an issue of boundaries and privacy.

 

I’ll tell you what happened with my dad. What happened with him was he felt he was fine and I saw him enough that I knew exactly how he was doing. I visited him one day and I noticed his balance was worse. His ability to remember things was a little worse. He couldn’t walk as far. He trusted me enough. I said I think we need to see the doctor. We went to the doctor who was actually my doctor, someone I’ve worked with for thirty years at the hospital. The doctor would say how’s you’re walking. My dad would say great. How’s your memory? Oh it’s wonderful. Then I’d be behind shaking my head no to give him a real picture. The doctor asked my dad to take off his shirt to take his blood pressure.

 

My father had a watch on his wrist and a watch on his elbow. I looked at it and I said dad why are you wearing two watches. He said I’m so glad you brought me here. I’ve been looking for that watch for three weeks. The doctor and I looked at each other and we immediately went to the emergency room in the hospital. From there he had an MRI and we learned he had a brain bleed. He had brain surgery the next day. What that illustrates is that our loved ones aren’t always aware of what they can and can’t do. It’s up to us to be there to begin that conversation, the caregiver conversation. It’s so hard because it reminds us of our own mortality. It makes us realize that they’re changing, that their health is beginning to deteriorate.

 

It’s a real loss. We’re losing the person that we knew and loved and that’s the first loss. Then the second of course is when they die. The thing to do is to have this conversation, the caregiver conversation when people are healthy when you know that the comments that you’re getting and the insights that you’re getting are accurate because the worst thing is to react during the crisis.

 

I always talk to people about thinking of it as a collaboration not a confrontation because what you’re describing in that scenario where you know your parents need help and they say I am fine. This is my house. I’ve lived here 50 years. I’m not going anywhere and you’re terrified they’re going to fall down the stairs or worse. You want to start from a place of love. That’s the other thing. You want to explain them while you’re having a conversation. You want to say to them I love you very much. I want to be here for you. I want to make sure you have a quality life and I want to make sure you you’re as healthy as you possibly can be.

 

I want us to do that together. I want to know what your thoughts are about when you age. How do you see it going? What do you want? That’s a gentle and loving way to open that door. I think that kind of a conversation can really be preventative in terms of the scenarios that you’re describing. You want to ask questions like if you get older if you do find that you that you do need help getting up and down the stairs or you do have a medical problem that we’re not aware of now are you thinking that you need someone from the family to take care of you, are thinking that you’d like a health care professional to come in or as you get older I know that you’ve got a bad hip and you’re in a lot of pain. When you’re climbing those stairs it seems that it’s getting trickier for you to do that. Do you have any thoughts about if a medical condition arises where you can’t do that what would be the next step?

 

Those kinds of questions. You’re not saying you’re in terrible shape and you’ve got to get out of here. You’re making decisions together at a time when and it’s coming from the place of love. A lot of times you start the conversation and the door just slams in your face. Your parent may say I don’t even want to think about getting old. I’m not going to discuss it. That’s fine but the door is open and you’ve opened it. You’ve let them know that you’re going to be there for them. They’ll be a time in the future when something does come up and you’ll be able to revisit that conversation I think in a healthy sort of limelight.

 

Diane: Well I love that you use collaboration as the key phrase rather than confrontation because you know darn well that we’re going to feel the same way. Oh no, I’m not ready. No, oh no, that’s slip and fall. No, I’m not ready. No one wants to surrender their freedom. No one wants to surrender their agency. I also wonder do we have this idea of assisted living facilities being these horrendous, horrific places where people go and are forgotten when in fact their science has come a long way and their ability to make environments that are actually friendly, social, conducive to activities and actually prolong the lives of people because of being more active.

 

A lot of that also has changed and evolved. As you’re starting to have these conversations, as you’re opening this door as you I think with love I really think also maybe you frame it and you also go and see places but I thought the other thing that was really interesting what you said about starting to be grieving and facing our own mortality is you see a parent age clearly the minute you start to realize they’re slipping away. You start to grieve even while they’re still alive. It’s a very strange twilight. It starts to affect you in terms of how you feel. The loss starts to sink in and in some ways you begin to love them more than you ever could possibly love them before as you start to feel them slipping away.

 

I wonder though, let’s be candid. I mean has this whole practice, has this whole incredibly well researched and practical exercise of writing this book made you better as a person preparing for your later years, your seniority?

 

Iris: Absolutely. Well both my professional experience and my personal experience. The other piece of it I took care of my mom and dad but I also took care of two friends that were my age who were single and didn’t have family. Their family of choice was their friends. We gathered together to help them die with dignity. One of the things about caregiving that I think is really amazing is you can have these moments of intimacy that are so beautiful where you get really close and reminiscing about the past can be a beautiful experience. Moments like that are so precious.

 

Of course there are challenges as well but what I’ve learned is that I’ve already started to have the conversation with my daughter actually. I’m much more sensitive to what kind of burden I would put on her particularly she’s an only child too so that’s another piece of it for me as well. One of the things about us boomers is and we’re all facing it now is thanks to the wonders of medicine we’re all living longer. Medications that they’ve created have helped us live longer but that doesn’t also necessarily give us more of a quality of life. That’s one of the lessons that I’ve learned too was working with my patients and then writing the book and then like my personal experience caring for the people that I did.

 

Diane: You’re astoundingly sensitive. I don’t think you’ve gotten care worn by your work. If anything I love the fact that you tune in to these moments of intimacy and how caregiving is this intimate act. I mean here we are two pandemics in that I can remember HIV and those who took care of friends who were suffering with HIV and now the pandemic and other chronic illnesses that seem more prevalent. It isn’t as uncommon to actually lose a contemporary. I think that that ability to really let your guard down and really open yourself up in caregiving is one of the priceless opportunities in life to just show love. I think I hear you say you’re having this conversation with your daughter, the only daughter. I was an only daughter. Many only daughters are also 30 percent of them you quote in the book are living far away from their parent. This also affects things but how does she respond when you try to initiate these kinds of important conversations?

 

Iris: She’s scared because she doesn’t want to think about losing me. She’ll say that. She’ll kind of smile and she’ll say oh mom, you’re going to live forever. At that point I don’t push the issue too much. I drop little seeds along the way. She’s been there and seen us lose our friends. She’s seen me lose my father. She’s seen my husband’s father die. That has been a part of her world. That was a part of my world when I was growing up. Three my parents’ grandparents lived in our home and they all died.

 

We’re luckier in the sense that we’re more comfortable about talking about those things. Many other people who are really terrified to think about getting ill or terrified about the notion of death and dying. I move very gingerly with her but she does understand that that’s an area of expertise for me. She understands that it’s a conversation that we are going to continue to have as my husband and I grow older. Thankfully we’re in pretty good health right now but I think when the time comes she’ll know that I’ll consider her needs as well as my own. That’s a message that is really important for me to give to her.

 

Also I’ve already initiated support from my nieces and other people in my family. She knows she’s not going to be alone in terms of taking care of me. I think that’s really reassuring for her.

 

Diane: I think it’s huge. In your book I thought one of the one of the great examples of the practical approach you took is asking the question who in the family is going to become the main caretaker. There’s a lot of considerations. Who’s going to be able to balance between taking care of parents, work, commitments to your immediate family? You say that different careers create different demands in terms of time, stress and travel. I know a couple of your siblings one was living in London, one was in California. You and your sister Susie were right there with your dad but there can be a barrier between siblings in the family relationship. Sometimes those of us that are only children it’s not such a disadvantage all the time because we don’t have those kinds of frictions and dynamics that might cause tension in terms of being able to figure out who’s going to be prime caregiver because it’s us no matter what or if there’s issues in our own personal life to deal with financial problems, relationship problems, time pressures.

 

I think it’s brilliant that you really brought these issues to light, these questions to light. Choices about where you decide to live and build your life, your relationship with your parent and what it’s been historically. Coming from a loving home you might have had different insights into that. We have to pause for another commercial break but you’ve been really I think therapeutic in the hands-on approach that you’ve taken and also contextualizing the way your dad viewed the world I wondered too about do we think that it’s, how do we take those steps to build our own patience with our own parent so that we are there for them so that we don’t end up brewing conflict over needs that are growing and our own despondency over losing them.

 

I wondered if some of these questions we’ve just got a moment before the break but I wonder if some of these questions prompt therapy for people or the joining of group therapy sessions.

 

Iris: I would say absolutely. We bring our parent child relationships into our caregiving role. If you have unresolved issues as a child with your parent you can be rest assured they’re going to bubble up as you become their caregiver. There may be guilt about things that happen as a child that your parents did or didn’t do. They weren’t the way that you wanted and there may be a sibling relationship issues like you described that were unresolved. All of that has to be considered and it does come up and I think it does bring a lot of people to that therapeutic moment where they need counseling and help to understand what role that plays and also how to cope and where to go from here.

 

Diane: We’re talking with Iris Waichler who is the author of Role Reversal: How to Take Care of Yourself and Your Aging Parents. Iris, citing this need for these resources and how to access them that’s really in a big way what your book is all about in addition to the very personal life story of you and your dad and your sibling and your mom as well. These life passages that you’ve witnessed and shared with us we really thank you for it. We’re going to be back in a moment and then we’ll continue talking with Iris Waichler. Don’t go away. We’ll be right back on Dropping In.

 

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You are listening to Dropping In with Diane Dewey. We’d love to hear from you if you have a question or comment about the show. Send us an email to ddewey@trunordmedia.com. That’s the letter ddewey@trunordmedia.com. Now back to Dropping In.

 

Diane: Welcome back everyone. We’re here with Iris Waichler and she is the author of Role Reversal. We’ve just been talking about how it’s important to have guides and resources because we’ve got to stay proactive on this right Iris? You described the situation of caregiving when we ourselves could be feeling burnout so therefore how to take care of ourselves first and then our aging parents. That happens simultaneously of course but also death itself, the passage of a person’s life in front of us. When that happens we are at our least able. We have the least amount of capacity to deal with the things that we then have to deal with which are estates, which are funerals, which are desires of what is to happen to remaining property, what’s to happen with inviting people. All of it can be overwhelming as well.

 

You talk about grief and you talk about being proactive. What’s your kind of take on it now? What’s your advice? Now that the book’s been out for a little while and has been really embraced by a lot of people as a helping guide. What’s your take on it? Are people getting more proactive? Are they seeing that we’re not going to live forever and it’s time to really organize ourselves this way?

 

Iris: It’s going to be interesting to see how Covid has changed how people approach death and think about it and grief and loss. I would say this. If you would ask me that question before Covid I would have said that it wasn’t moving in in the direction that I hoped that it would. I think that it’s when someone’s dying it’s obviously such a painful and difficult time but one of the things that I learned from working with my patients and in my own private personal experience you have to go with where the person that’s dying is at. It’s really hard to do that but sometimes people really want to talk to you about it. They want to talk to you about what their life meant. They want to talk to you about what needs to be done when they die.

 

They want to talk to you about what kind of ways people they want people to remember them. I had some of the most beautiful conversations I’ve ever had

With a friend of mine who I helped I helped die, die with dignity and also what my role was his brother didn’t want to let him go. He had a very serious aggressive brain tumor. He knew he was going to die. I’d have to say and I’ve been with many people that died he was the most at peace with the notion of death of anyone I’d ever met or worked with personally or professionally. He saw that his time on earth is beautiful and wonderful but he imagined the time after that is something quite glorious.

 

What I did was I helped him to share his feelings about that with his brother and initially his brother didn’t want to hear about it because he didn’t want to think about losing him but they have the most amazing moment together. I was with him when he was about to die and I knew he was going to die. I called his brother over and it was a privilege to be with him. I know that sounds odd when you’re standing next to someone that died but the love that they felt and the understanding that they had was something that I will never ever forget. I think it’s really important to have those again, have those conversations to have a greater understanding about the person that you’re going to lose where they’re at.

 

When I took care of another friend she loved the beach. The hospital that she was at, the hospital I worked at, the hospital gave us permission. We would take her to the beach. When she got too sick again, she was someone that was dying. She had ovarian cancer. We collected a bunch of sand on the beach and we put it in a box and then we got shelves and we got like a little palm tree. When she was too ill to physically go to the beach she would say I want to go to the beach. We would pull out that box and she would put her fingers in the sand and close her eyes and imagine she was there. Again it was such a beautiful moment and she helped us create it.

 

She said I really love the beach. I’d love to be there even though I can’t physically be there. I would encourage people to be less afraid of starting those conversations if you think someone is open to it. Try to get a sense of where your loved one is at and then proceed accordingly. If your loved one’s not willing to think about it or talk about it that’s fine but down the road as their medical condition changes there may be opportunities. You want to take those opportunities while you can because it’s not going to be there when they’re gone.

 

Diane: Well particularly in a sudden death if you have an illness and you can be a witness and you can, as you say it is a privilege. I feel very much the privilege that I’ve had in, you’ll never forget it for the rest of your life if you’ve sat with someone who has passed. I do consider it a complete honor that someone shares that with you and if they share what matters to them with you then all the better. The trouble is with Covid and people being taken all far too soon there’s no time. There’s no time to plan but as you say maybe there’ll be a kind of reaction to that and that people realize hey, we’re not going to be here forever. First of all carpe diem. Let’s figure out what does matter and secondly let’s share it with some people so that you know we do have people around us. People don’t have to fear dying alone and having more of a network if you will to build up support around us if and when those circumstances occur.

 

When we talk about grief, do you want to add a comment to that?

 

Iris: I did want to say one thing to that. I totally agree with everything you just said. There are those people and I experienced it with my patients where they were near death and their loved one was in the room with them all the time. Then the loved one went out to get a cup of coffee and that’s when they died. In my personal and professional experience I do believe there’s some, I can’t quantify it element where there are moments where I believe that a person has decided this is the time I want to die. They didn’t want their loved one to be in the room when it happened because they felt it would be too painful. They waited till they were alone.

 

There are those people that again it’s a very personal choice about how you’re going to die and when you die and how you experience it but I bring that up just because I want people to understand that there’s a multitude of ways that people look at the notion of death and how they want it to happen and what they want to be occurring around them.

 

Diane: I thought one of the profound things that happened two times in your life both with your mother and your dad is that you spoke to them and told them that it was okay for them to let go if that’s what they wanted to do that you gave them permission to go. It’s such an open-hearted, generous thing to say Iris. In both of those instances they did let go. What do you make of that?

 

Iris: Well the situation with my mother was so remarkable and it so sort of reinforces the story I just told you. She was in the hospital and she was very near death. The doctors told me it was early in the morning and they said oh, she won’t be alive by noon. My brother at the time was in California. My sister was in New York and I ran to the phone and I called them. I told them get on a plane right away. Then I went to my mother’s bedside and I said they’re on their way. Wouldn’t you know it? She not only stayed alive but when they arrived she was alert. She was oriented. She talked to them. They said their goodbyes. Literally when my three siblings and I and my father were around her bed after she knew everyone was there and she got to say what she did and my loved ones did as well. She died a very peaceful death surrounded by our family.

 

I think that again she wanted to say goodbye to my brother and sister before she let go and died. Once we were all there we said to her if you want to let go now it’s okay. I’m so grateful that we had that moment with her together and that we all got to say goodbye. The same happened with my dad. As you said his health was so bad at that point. They put him to bed and I whispered in his ear that I understand if he wants to go I want to let him go. I want him to be at peace.  It was a 15 minute ride home from where he was to my house. As I was walking in the door the nurse called me and said you better get back here right away. By the time I got back he had died.

 

It was very interesting too with my father the day before that happened and my father again mentally he was definitely getting more foggy but he was sitting. I was sitting with him and he said that he needed to go to work. I said why do you need to go to work dad. He said I need to take care of your brother and your sister and you. Even in the moments before he died he was thinking about taking care of our family. I said to him you’ve worked a long time and you’ve done such a wonderful job of taking care of us. I think you deserve a rest. I don’t think you have to go to work today. Again a very meaningful and beautiful moments for me. I was with him where he was at the time he was worried about his family up until the end and I wanted to reassure him. Those moments can live with you forever.

 

Diane: They give you juice forever. They give you energy forever. It’s powerful and I think that it’s two of the same things the embarrassment of not wanting to die in front of someone but what a role reversal, a classic role reversal when your child says to you it’s okay dad. You don’t have to go to work today. It’s okay you can take a rest. I mean really that is an exquisite thing. We don’t have much time left but I wondered if there was anything else that you’d like to add to the story of about death and grieving. Has it changed for you in the sense of the stages of death or is this really like a kind of those stages of grieving? Is it really much more circular than we ever think? Do we ever get over it? Are we meant to get over it? You get a minute to answer that incredibly profound, I mean are we meant to get over it or is it just something…

 

Iris: In the 60 seconds we have left what I would say is this my metaphor for it is I think of it as like being in the ocean. When you first lose someone there’s those giant waves and they knock you over. You’re trying to come up for air. You can’t breathe and it feels like you’re going to die. Then what happens eventually you learn to understand the waves and you’re able to read them. When a wave comes you’re able to stand up and you’re going to be okay but every now and then a rogue wave will happen, an anniversary, a birthday or someone reminds you of someone you lost and a wave will come up and maybe knock you on your butt but with time the intensity of those feelings does dissipate a bit. Certain days or moments are harder than others but you understand that you will be able to get through it. It’s not going to be easy. The pain remains but the intensity changes. That’s what I would say in 60 seconds or less.

 

Diane: That was beautifully spoken. Role Reversal is the book How to Take Care of Yourself and Your Aging Parents. Iris Waichler is on social media, at Facebook Iris Waichler and Instagram Waichler Iris, Twitter Iris Waichler. I think it’s very worthwhile to get a hold of this book both for ourselves and our own planning and for what we might have to be dealing with in terms of our family members. Thank you so much Iris for being with us.

 

Iris: It’s been such a pleasure Diane. Thank you so much for having me. I didn’t want to say that on my Facebook and twitter page Monday through Friday I post articles about caregiving and aging so people can get all kinds of information. It’s a great resource.

 

Diane: That’s brilliant and very generous as well. Thanks and thanks to our engineers Matt Weidner and Aaron Keller and to our executive producer Robert Giolino. Most of all thanks to you our listeners. Remember to stay safe and that you too might have a role reversal. Till next week thank you for dropping in.

 

Thank you so much for dropping in. Please join Diane Dewey again next Friday at 8 AM Pacific Time and 11 AM Eastern Time on the Voice America Variety Channel. We’ll see you then.