When Judith Henry’s parents became ill in 2007, not even her reputation as a pragmatist, a planner and responsible eldest sibling could prepare her for what lay ahead. But Judith had one advantage: around age ten she had played a caregiving role for her mother, who was in and out of hospitals. Judith’s caregiver-in-training childhood and transition to aiding her elderly parents in the last phase of their lives is at the heart and soul of her book, “The Dutiful Daughter’s Guide to Caregiving: A Practical Memoir.” Jana talks with Judith about her no-nonsense, witty and practical “Dutiful Daughter’s Guide to Caregiving” and how being plunged into 24/7 care made her realize that when you’re caring for a parent, it’s not just the time you’re actually caring for them – it’s your past and your present and your future, all brought to the table. From an astrologist’s prediction that came true and giving her dad a time out during Hanukkah dinner to helping her mother plan her own funeral, Judith mixes it up in this lively conversation. Note: this episode originally aired April 8, 2016.
Learn more at Judith’s website: Judith D. Henry
JANA – Judith Henry is a writer, teacher and speaker living in Tampa, Florida. The link between a caregiver in training childhood and assisting her elderly parents during the last phase of their lives is the heart and soul of her book, “The Dutiful Daughter’s Guide to Caregiving: A Practical Memoir.” Judith is also the creator of a well-loved writers group for caregivers, giving workshops and presentations on a variety of topics, including how to compose a legacy letter to family and friends, and have the last word by writing your own obituary. Judith Henry, welcome to the podcast.
JUDITH – Thanks so much. I appreciate it.
JANA – Great to have you. So tell us a little bit about your background and your family life growing up.
JUDITH – I grew up in Orlando, before Disney came to town. It was an interesting kind of a childhood. I had two younger siblings, and my mom became ill when I was, gosh, I think 10 years old. And so from that point on, she was sort of in and out of hospitals. And so I started taking on this role of sort of the young caregiver at an early age. You know, I kind of laugh – that was sort of my initiation into the whole process.
JANA – Your dad also gave you shopping duties on occasion, and that was a lesson in list-making, is what you said in the book. It sounds like you were well-prepared in certain ways. How were you not prepared?
JUDITH – Well, I mean, I had always, off and on, just as I was getting older, being the oldest kid, I was sort of that alpha child in terms of when there was an issue with the folks, it would be something that we would address – my parents and myself. But the thing is that when we start, when I started this whole caregiving thing, which it kind of came on, sort of suddenly, as it happens often with people, I was just amazed at how fast everything started coming at me. It was like the curtain went up and questions and doctors appointments and instant decisions. And that just took me completely by surprise. You know, I was having to process information, a lot of it that I wasn’t familiar with, very quickly in order to make decisions to help my folks.
JANA – Can you tell us a little bit about the move from Tampa to LA and then your long-distance caregiving, and then coming back?
JUDITH – Sure. I left Tampa and moved to Los Angeles to be with someone that I’d been in a relationship, like a long-distance relationship [with] for a while. And you know, at some point, I decided, Okay, I’ve got to kind of crack myself out of this town and try this. So I went to LA, where he lived, and I got a job managing a research study at UCLA for a very gifted epidemiologist. And you know, that was another experience of just getting thrown into something I didn’t know that much about, but kind of winging it, and funneling a lot of information, a lot of unfamiliar stuff. But you know, I was still very close to my folks and would talk to them weekly. And I started noticing about a year and a half in that the conversations were getting – seemed to be a little more stressful. And I don’t know, my mother’s voice got fainter, and my father’s voice got louder.
JUDITH – So at one point, when we spoke on a Sunday, and my dad said to me, I need you to come down here, because we’ve got to go over some things. So I said, Okay, and went, and was there for a couple days. And we went through a lot of it – my dad had this thing, he had notebooks for every topic. Every aspect of their life was in a notebook written down, which was great, except that it was every aspect, you know, for the past 85 years. And so it was, you know, a tremendous amount of information.
JUDITH – So I went back to LA after spending a couple days there, and I just knew in my heart that I needed to go home. I mean, it was just as clear to me as could be. So I left and I moved back to Tampa, which is where my home was, and my folks lived in Orlando. So I came back. And the first night I was there, I got a phone call that my mom had been diagnosed with breast cancer, and my dad had taken a fall on the terrazzo floor in their bedroom. And you know, the rest, as they say, is history.
JANA – That was within the first night of your arrival?
JUDITH – I was back in Tampa for a couple months. And the night I moved into my – I bought a home here in Tampa, and the night that I moved in was when I got this call. So you know, life changed irrevocably for all of us at that moment in time.
JANA – When you were living out in LA, and you spoke with them on the phone, did you feel like you were so far away? And did that make you anxious? How was your caregiving experience in LA versus closer?
JUDITH – Well, you know, of course, in some respects it was frustrating and a little frightening because I tend to be the fixer mentality. And there were things that I couldn’t fix via phone. I could make calls, but it was hard to not be there with them. But on the other hand, truly, I was a little bit relieved that I wasn’t, because I was just sort of having this premonition that things would become very big, very quickly. So it was you know, it’s sort of that push-pull kind of a feeling.
JANA – So your parents were in their early 80s when you were out in LA?
JUDITH -Yes, yeah. They were – well, like my dad was mid- yeah, mid-80s, I would say. Both of them.
JANA – Okay, and where were your siblings at this point?
JUDITH – I had a sibling in DC, a younger sister, and a brother in Texas.
JANA – Okay. And to what extent were they involved in the caregiving when you were in LA?
JUDITH – Not, not at all. You know, there wasn’t a lot of significant caregiving going on, because they were doing relatively well. But then things started to change quickly.
JANA – And then when you came back to Tampa, and you were closer to them, how far away is Tampa from Orlando?
JUDITH – It’s an hour and a half drive, typically, unless you get stuck at the entrance to Disney World, which is [laughs] – which is the norm. Every Mickey Mouse fan is, you know, sitting in traffic on I-4, so it could be anywhere between an hour and a half and two hours, typically.
JANA – Okay. So did your sibs get involved when you move back?
JUDITH – No, no, they were, they were not really involved. When my mother had a lumpectomy for the cancer and they didn’t get it all and she needed the mastectomy – that’s really when my brother came down for a week after her surgery, and my sister came down as well. So that was really the first time that we had all come together, sort of, with this common goal of you know, making sure that the folks were okay. But they were not really involved in the caregiving.
JANA – And where does your brother live?
JUDITH – He’s actually in Orlando now.
JANA – He is.
JUDITH – Yeah.
JANA – But at the time that your parents – well, let’s say, the time that your mom had the lumpectomy, where was your brother living?
JUDITH – He was in Texas.
JANA – Okay. And then he came, he moved back down –
JUDITH – he came down to visit. He came down to visit. It was after the surgery, and after my father was kind of recovering from the fall at least. You know, we had our family Hanukkah celebration and that’s when everybody came together for a couple days. And I’ll say it was an experience I will never forget, because on one day there when I actually sent my father to his room, because he was getting so loud and agitated, and it’s hard to describe what it’s like, as an adult child to send your parent to their room. You know, it was heartbreaking to me. So that was really a big event.
JANA – And your father – what was going on with him?
JUDITH – He had a level – it was dementia. You know, he was kind of in and out. It was an odd – I mean, he was an interesting character to begin with. And so there were things that were happening with him. Things that he believed that, you know, didn’t make sense. But yet, you could sit and talk with him and he could tell you everything about, you know, the political scene and whatever. So it was, it was like an up and down sort of thing. I never quite knew what was going to come out of his mouth at any given time.
JANA – Was he on medication?
JUDITH – No, no. No because he didn’t believe that there was anything wrong. And you know, we were seeing it because a lot of times the anger and stuff that he was feeling was directed at, primarily my mother and myself, which happens, they direct anger towards caregivers. But I had asked for doctors to do an assessment and they were all saying the same thing: that it wasn’t dementia, he was just, I think the word was difficult.
JANA – Right – this is who he is, I think you wrote.
JUDITH – Yes, exactly, this is who he is. And I’m like, Yeah, but. I mean, he was calling EMS personnel to come on Sunday morning and bring in his newspaper, so… you know. And then they’re calling me saying, you know, you got to do something. And I’m like, hey, they’re telling me he’s perfectly sane. So it was kind of like a three-ring circus. At times, yeah.
JANA – On my God. Well, I’m really interested in family dynamics and it sounds like that Hanukkah dinner was pretty pivotal. How did everyone there respond to the need for the timeout, each of you?
JUDITH – Well, I think the responses were, I don’t know, fairly – were in keeping with their personalities. They, I think nobody quite knew how to handle it, so they sort of took their lead from me. But everyone was fairly shaken by what was going on. And I think everybody was glad to get the hell out of there.
JANA – Well, I mean, you know, first of all, it’s a holiday or it’s an event where you want – everybody’s trying to behave well. And…
JUDITH – Oh, yeah.
JANA – All kinds of stuff happens during the holidays. And you observe —
JUDITH — sure, and expectations run high..
JANA – Right. And you observe strange behaviors in family members sometimes, regardless of whether or not they have dementia, so…
JUDITH – Absolutely.
JANA – Let’s go back to your mom for a minute. You temporarily placed her in a nursing home to recover. What was her reaction to having to do that?
JUDITH – Yeah, it was interesting. After she had the mastectomy then she was in rehab for 90 days. And really it was a godsend, because she would not have gotten the rest and recuperative time that she needed at home because my dad was very demanding of her time. And I found this rehab facility for her that had been well recommended. But she was, you know, she was angry. She didn’t want to be there. And I mean, my mother was sharp as a tack. She knew exactly what was going on. And she didn’t really want to be there. She wanted to be home, understandably. But it wasn’t the best place for her to be. And the interesting thing is that over time, she really had this chance to rest and sort of heal from the stress of being with my dad 24/7, and it became a sanctuary for her ultimately. And she had a couple other accidents over a five year time span. And we would always make sure she was back at this same rehab facility. So.
JANA – Did she go willingly the second time?
JUDITH – Oh, yeah, yeah, she knew that she needed to, again, be somewhere where she could get physical therapy and peace and quiet. And you know, it wasn’t like it was a four-star hotel. But it was all things considered, a good place for her to be.
JANA – And during the time that she was in the nursing home, how did your father fare at home on – was he on his own?
JUDITH – Well, I ended up contacting a service so that he could get somebody in maybe half a day, a couple days of week, so that there was somebody checking on him frequently enough, and someone who could cook his meals and do laundry and, you know, essentially listen to his stories – take him to doctors appointments, and that sort of thing. So he did have someone looking in, which was very important, because I was worried and my mother was worried.
JANA – Was he still driving at that point?
JUDITH – Well, very sporadically. You know, that’s a good question you bring up. At one point I was getting concerned and knew that we needed to get his driver’s license suspended. I mean he was just, he was just getting so angry. And he had, you know, like, knocked into the bushes in the car and everything. So I did research and actually ended up calling the Florida Department of Motor Vehicles and explaining who I was, and that, you know, I was concerned for my father, and for other people on the road due to his disability.
JUDITH – And I also had his physician do a letter. And so they allow you to do this, and they contacted my dad, but they just said that someone had reported him. And they did not give my name, which, you know, I begged them not to because, you know… so that’s what happened. And they told him, your license is going to be revoked for six months. And if you can pass the driver’s test again, then we’ll give you back your license. And of course, ultimately, he couldn’t do that. So, you know, that’s how we dealt with that. So he never knew that I had initiated it, but…
JANA – Wow. But that’s pretty clever. I mean, you have to be practical, you know?
JUDITH – Well, you do, you do. And the fear, again, was always that he could hurt himself but someone else, and that would have been, you know, unforgivable. So, yes, you get very creative with solutions. And sometimes – I think I mentioned this in the book – you know, being telling the truth sometimes you have to sort of be creative with it.
JANA – Shade it.
JUDITH – Yes. Yeah, exactly.
JANA – Go in a different door.
JUDITH – Yeah, yeah. Yeah. So you know, I did a lot of that with him.
JANA – Yeah. You must have been really worried, though, when he was on his own. Did you see him during the week?
JUDITH – I was going over every weekend. And of course, I was going and visiting him, and helping taking care of things that he needed. And then I would go see my mom and rehab. And so I did this for a couple months, every weekend. And then if there was a health crisis, like he needed doctors appointments sometimes and, so I would run over and do that. And then as things started to escalate, when my dad died, and it was just my mom, then there were things that were happening during the week. So I was spending a lot of time going back and forth from Tampa to Orlando.
JANA – Mm-hmm. Will you talk a little bit about those last moments with your father, and his being in intensive care and his process of winding down? That was such a moving chapter.
JUDITH – Oh, thank you. Thanks, it, you know, it was – it’s kind of hard to describe it. This is sort of an odd thing. But I, someone had offered to do my horoscope before I moved from Tampa to LA, and I’m not a woo woo kind of gal. I don’t you know, I’m not a rainbow and pink unicorn person. I’m pretty grounded. But someone had suggested this, and I did. And the gentleman was great. And he said to me, You are going to be present at both of your parents deaths. And I thought to myself, Well, how can that be? I’m moving to Los Angeles. But I never forgot that. You know, it was tucked in the back of my mind. And so here I was, this last day of my dad’s life, I had been getting ready to go to a conference, and in the back of my mind, I just had this sort of premonition.
JUDITH – And I got a call from a doctor at the hospital who said that my dad was in the ICU, and he was non-responsive. So you know, I got in the car and of course, I drove over there. And he was unconscious for the better part of the day. And they told me that there really wasn’t anything that they could do, that his body was just simply shutting down. And he was ready to go. I knew that. We had had conversations about that in the past. And he was just tired. He was worn out. And I got it.
JUDITH – And so at one point, I went to the nurse and broached the subject. I said, you know, I’ve got his DNR, I have his living will, I’m making the decision as his healthcare surrogate, that I want tubes and everything removed, and I just want him to be as peaceful as he can. So they agreed, but it took more hours to get that – doctors have to sign off, and that took another three or four hours to do.
JUDITH – But ultimately, we were, you know, we were left alone in this room together. And I was there all day, and I just sat beside him holding his hand. And when they took all of the paraphernalia out of his mouth and his nose and everything, he woke up briefly. And he said to me, What’s going on? And I told him. I said, you know, Daddy-O, it’s okay. You can let go and I’m going to be right here. And he closed his eyes. And it was funny, because the nurse said to me, Would you like a clergy person here? And I said, Well, we’re Jewish. Do you have a rabbi handy? So you know, they’re like, well, I don’t get that request too often.
JUDITH – But anyway, they put the call out and, you know, I’m sitting there and a while later this man walks into the room, and I’m thinking – the first thing I’m thinking is funny, he doesn’t look Jewish, would be my first thing. And it was so funny, because he walks in and he looks at me for a minute, and I look at him. And then he says, I’m not a rabbi, but will an Episcopalian do? And it was just the most exquisite moment, and I just burst out laughing. And I – it was so healing, it was like, just what I needed to help this – the pressure and feeling and emotion of that moment. So he said a prayer over my dad, of letting go and forgiveness. It was amazing. And then my dad, a while later, just quietly stopped breathing, and that was it. And you know, it’s just a moment I’ll never forget, ever. It was extraordinary. And it was truly the best death, I could hope for him. Because it was so peaceful, and so quiet, which is something he, you know, he had been missing in his life for a year. So.
JANA – Yeah. How ’bout that. You wrote about how your dad said, do you think the doctors would give me a pill to make me sleep and not wake up? I’m so tired. That’s such it’s a really powerful statement. But a lot of older folks, they’re ready. And it’s almost like we’re hanging on to them. And I think it’s just such an incredibly powerful thing to say, and so brave to make that kind of a statement.
JUDITH – Yeah, I agree. And it was heartbreaking to me, because on one hand, he was fighting like hell to stay in control of his life. And this is what created so much of his anger and his angst. But yet on the other hand, he was so tired. So it was hard to hear that. But you know – and this is another funny story – he would say to me, he would sort of try these things out with me, he would say something and he would wait for a reaction. And I was always just very matter-of-fact because that had always been our relationship. And he said to me one time, You know, I keep asking God to take me. And I said to him, And how’s that working for you? And he goes, Well, he says, Well, it’s it’s not happening. And I said, Well, you know, service is lousy everywhere, Dad. And he laughed. You know, because again, that was that was our relationship right with each other. But I could also tell that saying that he was sort of trying on the idea of not being here anymore.
JANA – Interesting.
JUDITH – So.
JANA – Getting comfortable with that reality.
JUDITH – Yeah. And I think as his child, you kind of go, No, no – you know, you’re not supposed to think that. But I understood it. And it was really about what he wanted, what he needed, not what I thought should be. So.
JANA – That must have been a huge shift for you, too, emotionally.
JUDITH – Yeah, it was. I mean, there were – there were times with him, the back and forth that really, I think, was one of the most difficult aspects of this whole six year experience of caregiving, you know, both my parents for one year, and then my mom for five years after my dad died. But it was so fraught with anxiety and really emotional upheaval, but ultimately at the end, it was very healing. And we sort of, I don’t know, came to terms with things, with each other. So, yeah.
JANA – Well, I think that goes to the point that caregiving is really tough, but it’s also so transformative in certain ways. You don’t know that that’s what’s happening – or necessarily know. It’s like an iceberg.
JUDITH – Yeah, yeah.
JANA – You don’t see it moving, but it’s moving. And it’s powerful.
JUDITH – Yeah, that’s a good way to describe it. And you really don’t know what’s going on beneath the depths, until truly you have time to sort of reassess it. And that’s what the book ended up doing for me, was just finally giving me time to explore these experiences and really, for the first, time realize where they led me and how they changed me or deepened my relationships with my parents.
JUDITH – And it was really when I was finally able to mourn both of their passings. Because you know, when you’re caregiving, you’re, it’s like, everything’s bam, bam, bam. You’re doing 24/7.
JANA – Right.
JUDITH – And so a parent dies and it’s almost like, Well, okay, but you know, I’ve got to do this, this and this, because there’s another parent that I have to take care of. So it really wasn’t until I started writing the book that I was able to mourn their death, but at the same time hold them close through the stories I was telling. So it was a very, a lot of profound realizations, but also very comforting ones, if that makes sense.
JANA – Absolutely. The Scrabble games that you played with your mother were so familiar. She was 86 at that point, and she was living on her own. Tell us about her life after your father died.
JUDITH – She didn’t want to be in the house that they had been in for so long.
JANA – Really?
JUDITH – Um, yeah, it was – it had sort of deteriorated over time. And so we found her this lovely little bright, shiny duplex apartment. And she lived there for a couple years, almost on her own. There were times when, towards the latter part of her time there, she was getting more unsteady on her feet and was having some more issues. And so then, you know, we had an agency have someone to care for her – well, not to care for, to be there, essentially, as a security measure, and – because she was getting anxious at night to be by herself. But during the day, I mean, she was still driving, she was still going to her favorite Goodwill store, I mean, very much alive and still doing her artwork, because my mother was a passionate artist. So that was primarily it. And the fact that it was a small place was infinitely more manageable for her. So we didn’t have to do, you know, a great deal to make it a safer place for her.
JANA – And that was the first time that she had lived on her own, right?
JUDITH – Yeah. And she loved it. You know, she was always like decorating in her mind, what she would want to, you know, how she would want the place to look. And so for her, it was, I think, very much a sense of freedom. And to have that feeling at that age is pretty, pretty amazing.
JANA – Yeah. Tell us about having the conversation about the ending with your mother. She was very practical, and she wanted us to plan her own funeral.
JUDITH – Yeah, it was funny. She had been going back and forth to the ER for a while. And, you know, I was sort of trying to prepare myself for it – for the end. And at one point, I was visiting her on a weekend and she looked like this little tiny sparrow in the bed. I mean, just so, so tiny and so fragile. And I said to her, you know, Mom, I said, I love you and I want to make sure that you get the send-off that you want at the end. So how about if we plan your memorial service?
JUDITH – And she looked at me and she goes, Oh, that’s a great idea. Where should we start? And I mean, we spent the next hour and a half – we, you know, she wanted her Barbra Streisand music and her klezmer music and deli food. She was saying, you know, I don’t want any schmaltzy stuff. I want people to talk and laugh and remember the good times that we had, and it was a very bittersweet experience with her. But you know, I think my saying it sort of allowed her -it was almost like a, for lack of a better word, a permission thing. It was like, you know, you’re free to imagine whatever you want and by God as your kid, I’m going to make it happen. So it was just truly a beautiful experience.
JUDITH – And again, so helpful, because I wouldn’t have known what she wanted. And you know, one of the things I said to her was, Do you want to donate some funds in your honor? You know, would you want to do it to breast cancer research. I mean, that’s, you know, that was my first thought. And she said, Hell no, I want to give it to art, to people who want art classes and stuff. And so I was like, Damn, had I, you know, had I not asked, I wouldn’t have known that. So it was a really beautiful experience.
JUDITH – And at the end [of] the conversation, she said – we were talking about what she wanted done with her ashes. And of course, I told her I was going to have mine sprinkled over Steinmart or TJ Maxx. Did she want that? And she said, No. She said, Would it freak you out if you brought me home to your house? And I said, No, I would – I absolutely will do that. And that’s what I did.
JANA – Under a papaya tree, as I recall from the book.
JUDITH – Yes – yes! A little bit of hers under the papaya tree, and the rest of her is on my bookcase. And I’ll sit in my sunroom and chat. And… yeah.
JANA – And she died in her home, right?
JUDITH – It was not in that home. She actually moved into a rental home, and my brother, at some point decided to move from Texas and kind of start a new life in Orlando. So they shared a home together. And he was there at night for her so that she felt more secure.
JANA – Oh, that’s great.
JUDITH – Yeah. And so..
JANA – She wasn’t in the hospital, is my point.
JUDITH – She was not in a hospital, correct. She was home and, you know, those last moments everyone was around her, and it was what she wanted.
JANA – It’s so beautiful that you had such an honest conversation with her about the end. Why do you think it’s so hard for us in this country to talk about end-of-life issues?
JUDITH – You know, I think so many people are just in denial about it. It’s like, because everything in this country is a war. You know, it’s the war against cancer. It’s the war against drugs. It’s the war against poverty. And so the whole idea is this – you’re fighting to hold something back. And the bottom line is, none of us gets out of here alive. So how do we make sure that the people we love, including ourselves, have the best possible life but also the best possible death? And to me, those things are not mutually exclusive. And it all starts with dialogue.
JUDITH – You know, we’ve got to be able to talk openly about those things. And it’s okay to say, you know, I feel uncomfortable, I don’t know what to say, it makes me sad. I think we have to just be honest with that. And then when we do that, then we can change things. Then we can make things better. But you’ve got to start with this dialogue and acceptance of what’s happening.
JANA – It really almost takes a catastrophe within a family, for the conversation, even to be a possibility.
JUDITH – And it’s – it is unfortunate. And really, that’s one of the things that I was focused on with the book, is that as many things as you won’t know what to do when they happen, there are things that you can do to prepare ahead for this experience, so that some things are not blindsiding you. And I think those conversations about what people want at the end, what they’re willing to accept in terms of treatment and care are critical to know. But they’re also very much acts of love. So I think we just have to change how we view the conversation
JANA – Tell us a little a bit about what you refer to as the greater understanding of myself, which came from the connection with your parents. What did you learn about yourself?
JUDITH – Well, I think the biggest thing was that I really learned what I’m capable of doing for love, with very little training. I mean, that was sort of eye-opening. I think learning that there were some things that were actually intuitive, just because these were my parents, and I think I knew them better than really, I mean, honestly, than anyone else in the family. But I think that was the biggest thing.
JUDITH – But I also discovered that I really have a bossy streak. And, you know, while that was good in some instances, you know, when talking to doctors, there were times in sibling interactions that I wish I had been a little more sensitive to things. But again, you’re doing and you’ve got to get stuff done and so…, you know what I’m saying?
JANA – Yeah, yeah, yeah. Can you think of an example where you had a disagreement with one of your siblings about what should be done with one of your parents?
JUDITH – Well, they were pretty much you know, Whatever you decide, is fine. I mean, they were very willing to give up that thing. But the thing that I say – and again, this was something that I realized – is that when you’re caring for a parent, it’s not just the time you’re actually caring for them. It’s your past and your present and your future, all are connected in the care that you bring to the table. And when you realize that each kid is coming to the table with a different parent-child relationship, and kind of mixed views of what their contribution is going to be, it makes for quite a stew. And so I think I wish that the time that I had known that – I was more clear about that – because I didn’t really understand it at the time. And so while we were all, for lack of a better word, culpable in some of the things that were going on, I felt as the eldest, type-A, responsible kid, that I should have tried to smooth the way sometimes a little more. But it wasn’t to be.
JANA – Do you think your siblings have regrets?
JUDITH – That’s a good question. Yeah, I think one of them may. I’m not really sure about the other. I don’t know that it’s something that – I mean, I can’t speak for them, but [unintelligible], I think everybody felt that they did the best that they could. And so if you feel that way, then I think sometimes the regret that you have is minimized.
JANA – Did you ever feel resentful? Like you were doing it all? And can somebody please help me?
JUDITH – Oh, yeah.
JANA – You talk about compassion fatigue. Why don’t you expand on, and some of the reasons caregivers don’t ask for help and how you dealt with your stress.
JUDITH – Yeah, I didn’t deal with it very well. [laughs] Well, I mean, compassion fatigue is a very, very real thing, particularly for caregivers, because we – and I would say particularly for women, because we take on these sort of superhero roles as women, and you’re juggling households, and work and kids, and then you have parents. And it’s almost like that’s what’s expected of you.
JUDITH – So this idea of just getting totally tapped out in terms of care and compassion is very real. And you know, how can it not happen? Because most of the time you’re looking at caring for the other person, and you’re not looking at your own needs. And so you do become resentful, and you wish sometimes that it was over, even though you know what that means. But I think the thing is, we have to realize that that just makes us human.
JUDITH – And I think when we realize that it sort of can take a little bit of the pressure off, to not feel like you have to be in control of every situation, because we’re really not. And this was a powerful thing for me, was realizing that despite my efforts and my best intentions, I couldn’t always make things better for my parents. And that was a profound realization to me. But in some ways it also, let me take a little bit of the pressure off myself.
JANA – There are so many parallels, we all have so many parallels in our own lives. I’m thinking about a time when I had to just kind of get used to seeing my mom sleeping a lot. She was real depressed after my father died. And I couldn’t do anything about it. And so I just kind of had to let go of that idea that I could do something about it.
JUDITH – Yep. And what you’re saying is so true. Because I find this in the writers group that I do for caregivers.
JANA – Yeah, tell us about that.
JUDITH – Well, you know, everybody’s coming from a different caregiving experience. But the beauty of it is, is that there are just common threads that run through everyone’s experience, whether they’re caring for a parent, a spouse, a child – those feelings sometimes of being unable to cope. Guilt enters into the picture, you know, your heart is broken but part of you is going, Oh, I’m so tired. How much longer can I do this? kind of thing.
JUDITH – And so this writers group for caregivers, which I started after writing the book and realizing how the writing had helped me, it’s the same way with everyone there. I give them a topic at the end of each 2-hour meeting. We get together once a month. And it’s not always a topic that’s specific to caregiving – again, because you know, these are people who are not only caregivers but they’re authors, they’re parents, they’re children. I mean, there’s so many parts of you beside caregiving. And so what they write about, you know, that’s sort of just like the spark, to kind of set them on their writing journey.
JUDITH – And what comes back is just so amazing, and so deep, because everyone feels that they’re in a safe place. And you can say what you need to say, and yet everyone is there to go, Oh, my God, I know how you feel and – or, Oh, I hadn’t thought of it that way. So it’s to me it’s kind of a form of respite care for people. And I think the writing can be tremendously helpful. I mean, for me, it was my sense of my, you know, keeping my sense of humor during some really crazy times, and writing these things down. Those are the things that I think got me through
JANA – Well, speaking of funny things, you’ve got a great glossary at the back of your book. I’m going to throw out a couple of terms and have you define them for our listeners. Here’s one: “awfulize”.
JUDITH [laughs] – Yeah, well, you know, to awful – I mean, I’ve grown up doing that, and I don’t know whether it’s a Jewish thing or what, but it’s my word for you know, I’m looking at the worst possible scenario of everything. You know, what is the worst thing that will happen? And that’s immediately where my mind goes, in an effort to prepare for who the hell knows what.
JANA – Okay, so to “awfulize” the situation is to think of the worst possible outcome.
JUDITH – Yes. Exactly.
JANA – Okay. How about “cone of uncertainty”?
JUDITH – Well, yeah, I mean, you know, living in Florida, you probably are familiar with that term. It’s the fact that the weather, the weather, people, when they’re projecting where a hurricane is going to land, they don’t really have a clue. So they’re, you know, they’re giving you this, this “cone of uncertainty,” which is what they call it, which could be the potential path that the hurricane takes. And my use of the term was in the chapter on grieving, because you don’t ever know when grief is going to hit you. And with all due respect to Elizabeth Kubler Ross and her five stages of grief, it’ll bite you in the butt when you least expect it. So that was my use of the term.
JANA – Yeah. There’s no predictable pattern there.
JUDITH – Yeah, yeah.
JANA – Okay: “mishegoss.”
JUDITH [laughs] – Yeah, you know, you have to – I have to put in that Yiddish, because I wasn’t sure who would be reading it. But yeah, “mishegoss” is a great Yiddish word for craziness. And I think I likened it to the state of our US Congress, which – even more so than ever, now.
JANA – Right. So I’d like to know, since we’re getting close to the end of the hour, your last thoughts – not to be confused with last words, as in dying words. What sort of last thoughts do you have for our listeners?
JUDITH – Well, I think there are a couple different phrases that I wish that I had used more with my parents. And I would suggest that we all become more generous with them in our day-to-day conversation with people that we love. Because I think there’s so much regret tied to when a parent or any loved one dies. And so you wish that you had said, Thank you. You wish that you had said, I love you, or I forgive you, or Please forgive me. And I think if we use those more frequently, that actually – I mean, I’ve seen it, it can change the direction of relationships sometimes, if you invoke those words, and mean them. And so I think we need to be much more generous with them. And I think using them can be a way of sort of minimizing the regret that we often feel after someone’s gone.
JANA – And where can people learn more about your work and what you do?
JUDITH – Well, they can go to my website, which is judithdhenry.com. And the book is available through the website. It’s also available on Amazon, but it can be purchased through my website. I do talks on caring for older adults, I do talks on grief and loss. So that’s also another aspect of the work I’m doing.
JANA – Judith Henry. She’s the author of “The Dutiful Daughter’s Guide to Caregiving: A Practical Memoir.” And she sponsors a writers group for caregivers, giving workshops and presentations on all kinds of topics. Judith Henry, thank you so much for being on this podcast. And thank you for this fabulous book that everyone should go out and get. Thanks, Judith.
JUDITH – Oh, thank you so much. It was really great to be here.