Transcript 

Ben Smith:

Welcome, everybody to the Retirement Success in Maine Podcast. My name is Ben Smith. I am joined by my two co-hosts Abby Doody and Curtis Worcester, the Keith Carson and Jessica Conley to my Todd Simcox. How are you guys doing today?

Abby Doody:

Good, how are you?

Ben Smith:

Good. For those that are maybe outside the state, those are some pretty good meteorologists that of course, we spend a lot of time watching weather in Maine. It's a little inside joke there. Well, welcome everybody in our show of course. We've actually been very blessed. We've covered a lot of topics. I think we're on episode number 44 at this point. For those long haulers that have been with us pretty shaped the listenership. We've covered lots of things, but one thing we've really not had the conversation about yet has been caregiving. And according to the National Alliance of Caregiving, in AARP, 53 million, so 53 million or 21% of Americans are providing unpaid care to an adult with health or functional needs.

Ben Smith:

24% of caregivers are caring for more than one person. And then 26% of Americans are caring for someone with Alzheimer's disease or dementia. And so not only just that as a big, hey, we're all busy in our lives and taking care of maybe families underneath this or friends or, social lives and careers and doing all that. But also the other point of this is, lastly 26% of family caregivers report their own health as fair to poor. As we're taking care of others, we're typically not taking care of ourselves too. So really the question we want to dig into a lot today was, what do we need to know about caregiving before we get into the role? Because obviously it can become very difficult to balance our own mental, physical, and emotional health and the person we're taking care of, but also where do I go if I need help and I have questions?

Ben Smith:

How do I make sure I'm okay after the adult I'm caring for is gone? That's really the premise of today's show. Today we have an expert that's been a well known patient advocate and licensed clinical social worker for the last 35 years. She began her career working with geriatric patients who experience catastrophic illness and counseled them and their families about adapting to these medical problems. She helped them understand their medical condition and counseled them about how to cope with the disease and its impact on their lives. She continued to work on a rehabilitation unit in a large Chicago teaching hospital with patients who had suffered traumatic brain injuries, strokes, cancer, amputations, burns and neurological diseases multiple sclerosis and Parkinson's disease. She also covered the emergency room for 13 years, seeing patients of all ages with a variety of medical problems.

Ben Smith:

In writing her new book, “Role Reversal: How to Take Care of Yourself and Your Aging Parents”. Our guests has come full circle. Her experience in caring for a beloved father who died at age 97, triggered her passion and reaching out to others who suddenly find themselves in a caregiver role and are uncertain about what to do or where to go for help. In this book, she shares her father's inspiring story and a personal professional experience and assuming the challenges that come with being a caregiver for an aging loved one. Also today's guest has been doing freelance writing for the last 20 years. The focus of her work has been in health related topics and assisted her readers to gain knowledge that helps them feel less alone and empowers them in a significant new ways. At this time, I'd like to please welcome Iris Waichler, to the Retirement Success in Maine Podcast. Iris, appreciate coming on.

Iris Waichler:

It's great to be here. I wish I could be with you in Maine.

Abby Doody:

Yes.

Ben Smith:

I know. The weather's starting to get really nice.

Iris Waichler:

Beautiful.

Ben Smith:

So you're missing out. Iris. Where are you located right now?

Iris Waichler:

I'm in Chicago, Illinois.

Ben Smith:

Okay. Perfect. Well, I know so you're national league with the Cuby's and I'm sure Cuby's, not White Sox, I guess, where the baseball-

Iris Waichler:

I'm on the North side, so I have to be.

Ben Smith:

Okay. So we got a little White Sox, Red Sox.

Iris Waichler:

I'm very close. I can almost hear the bad crack when a home run is hit.

Ben Smith:

Well, that's great. Again, we shared executives for a while. We broke curses together. A lot of compatriot baseball stories there. Well Iris, with all of our guests, as we dig into our shows, the first thing you want to do is get to know you a little bit more, love to just hear a little bit about you in terms of a brief background and biography, including your past for social work. Where did all that start?

Iris Waichler:

I was thinking about that as you introduce me. Where I grew up, there was a hospital nearby. In high school I said, I want to work in that hospital someday. I wasn't sure what I was going to do. I knew my math skills were horrific, so I was not going to be a doctor or a nurse. When I went to college, I majored in psychology and we worked with rats, and I knew I wanted to work with people. And so I transitioned into social work, which was probably one of the best decisions I ever made in my life. And as you described, I was a social worker on physical medicine and rehab units. The people that I worked with came in and had horrific life changing illnesses in a second. We had burn patients as well and seriously ill people.

Iris Waichler:

A number of my patients were seniors too. The thing I loved about that was, they welcomed our help. I worked with a team of people that were incredible. I worked with a physical therapist, occupational speech, and a nurse and our doctors. And we truly were a team. And our job was to put people back together as best we could. It was a joy for me to be there because patients came in and 99% of the time, they came out a much more whole person being able to do a lot more than they did when they came in. We had a young girl, a woman that came in who was 32. She had something called Guillain-Barre syndrome, which was an illness that attacks your organs. She was a runner, they wheeled her in on a gurney because she couldn't really move.

Iris Waichler:

And it happened out of the blue. And she said to me, as they were wheeling her in and she lived in Michigan, she said, we have a race in Michigan, I run every year, next year I'm going to run it. And she did. She did.

Ben Smith:

That's awesome.

Iris Waichler:

And it was incredible. And so we had those kinds of miracles every day and it just was so rewarding for me and amazing. And so I fell in love with working with seniors there and just working with people in general that had these life changing illnesses. My job was to counsel the patients, their families, and also to help them transition out of the hospital because you, you do all this work, and you want to make sure that when they do return home or wherever they went, that things were in place to allow them the opportunities to continue to succeed and move forward. That's basically where I got hooked and I haven't looked back. I wasn't really a writer back then. I did write a book when I was there. And this is where I found that amazing part about writing.

Iris Waichler:

I was walking on my unit one day and family members of a patient of mine were sobbing in the hall. I wasn't quite sure what was happening. I looked in the door and the resident was just doing an EKG, just a standard tests, but they were just so upset. And I said to them, what's wrong? And they thought because he was hooked up to the EKG, that meant he was going to die. And the resident hadn't taken the minute it would have taken, to just say to them, we're just doing this simple test. They didn't know what questions to ask. They felt so vulnerable, so helpless. And so that was as Oprah would say, a light bulb moment for me.

Iris Waichler:

I realized that people knew the questions to ask, or they were educated at times in their lives where they're so incredibly vulnerable, were in the middle of a healthcare crisis, that it could really make a difference in their lives. I ended up writing a book based on that called Patient Power: How to Have a Say During Your Hospital Stay. From then on I realized that writing was something that I really enjoyed. And so that's when I pursued my writing piece in my career.

Ben Smith:

Iris too, we'll make sure for those that are listening in to today's show to put those links to those books. I know we're going to probably cover some of the topics that are in them-

Iris Waichler:

Absolutely.

Ben Smith:

... and multiples of them. We'll have our show notes for those that want to listen in and they can find the links and if they want to go, again, the Role Reversal book, but also the medical empowerment piece. All the stories here, I'd love to have those links. If you want to go acquire them, that they would be there. I'd love to hear a little bit about, obviously, again, social works is a very broad area, right? We've had lots of social workers or several social workers come on our show. It seems there's just a lot of synergy between, hey, here's where we're talking about aging and empowerment and trying to find your best self, which are themes throughout life anyway. Right? It's not just an aging thing for, you're getting retirement age. It's really at all ages we can be there. Can you talk about just that gravitation that you had towards caregiving and aging? What was the impetus that got you to be more focused there?

Iris Waichler:

It was really interesting when I started working on Role Reversal with my dad. And this is unbelievable when I look back, but when I was growing up, there was always a relative in my house that my parents were taking care of. Three of my grandparents lived with us. Cousins lived with us, my uncle lived with us. And so I had these models that were always there with me. And so I think that really made a difference for me. It really showed me the importance of caregiving. My parents were both loving, caring people, and that's not to say that it always went beautifully and smoothly by the way too. My mom and her mom had a lot of fights and my grandmother, my maternal grandmother died of cancer. So she got quite sick. And so that was for me really important. But also the other additional piece was as a young adult, as an adult, I had two friends that got seriously ill and had no family.

Iris Waichler:

It turned out their family was a family of choice. And so friends banded together to be their caregivers. And then I became a caregiver for my mom. She died at a really young age. She was only 57. She had breast cancer and it metastasized to her brain. And so it was a very long, very difficult. She was really ill for a couple of years. I had all that experience and it really sunk into my bones. And it really made me realize how important caregiving is. And at the beginning of the show, when you mentioned the 53 million, I have to tell you COVID changed the landscape of caregiving, because as a result of COVID, of course, people were stuck in their homes and the support people that came in to help them were unavailable.

Iris Waichler:

That number that you gave from the Family Alliance, during COVID that 53 million went up to 63 million. These were people that weren't necessarily caregivers before. And also they didn't, a lot of them had lost their jobs and the financial support that they had, so they couldn't afford to bring in outside help. And the other interesting thing that happened as a result of COVID was before then the average age of a caregiver was 49, taking care of a 69 year old person. But the numbers went down in terms of the age of caregiving. And millennials really stepped up to the plate, to use a Cub metaphor. And they really had to really help out. Also the other people that were really affected by it were those sandwich generation people that you refer to Ben, people that were all of a sudden they're homeschooling, they're taking care of their kids.

Iris Waichler:

They're taking care of perhaps their parents, and those people really, really got hit really, really hard. Not many good things came out of COVID, but I guess you could say one good thing was, it highlighted the gaps in our healthcare system. And it highlighted real importance of having more services available to people. Hopefully we'll learn from that and hopefully we'll have more programming and funding in place to put more support for people in those areas.

Ben Smith:

And Iris, I think that's something where, I think when we're all scripting our lives and we're thinking about the things that we want to do and all the fun we're going to have and all the places we're going to go see, and the success you're going to have in different levels of your life and career and personal and all this. For maybe a lot of us is, hey, all of a sudden you're thrust into a caregiving role. There's lots of things that go along with that. But also we spend a lot of our lives training to that career success and training to friendship success, and working on those things, right? Working on all those skills, but it feels we don't really, we're thrust into a caregiving role perhaps, maybe again, when I say thrust, maybe I'm doing it very willingly and I really want to do this and I love this person, I really want to help them out, but maybe I don't have the training, right?

Ben Smith:

No one's ever told me what it means to actually do the caregiving role and what that means for me and what sacrifices I might have to make to do that. And how do I get support? That's a lot of the show and I want to dig into that with you a little here, but of course we always want to start with a little foundational piece, right? Is get into just this kind of, let's all use the same language. Let's really use the same definitions. I'd like to ask you first about that common foundational knowledge, can you just define what caregiving is and then who are we giving care to?

Iris Waichler:

Yeah. Caregiving is anyone who provides physical, emotional, psychological assistance and support to someone who has a medical need, a mental health need, who cannot take care of themselves without that assistance. And it may be because of a medical condition, it maybe because of a disability, either mental health issue or a physical disability. That's how I would describe what a caregiver is.

Ben Smith:

Got you.

Iris Waichler:

So what the goal of the caregiver is, is to help provide as much a quality of life as possible to that person. And that is an incredibly lofty and difficult goal, but that's it. I thought your intro to this question was really important then, because something we need to remember is, when we are taking care of people and most of the time it is our parents that we all are aging now, the wonder of medications has helped us all live longer lives, which is a wonderful thing that doesn't necessarily that we all live quality, healthy lives. And so the majority of caregivers are people taking care of their parents. And so one of the pieces of that is, we bring all that relationships to help that we had when we were growing up into that caregiver role.

Iris Waichler:

I think people don't always think about that too much. There are a number of people that are also taking care of spouses. A lot of veterans come home and they have injuries and limitations because of their experience and so there are a number of spousal caregivers as well. And then there are a number of caregivers that are taking care of kids that have some medical or physical or mental health issue as well.

Abby Doody:

And so you touched on this a little bit, but how does the role of a caregiver change as the adult we're taking care of ages? Right? You mentioned that a lot of times it's the parent that we are caregiving for. How does that care change as the parent or whoever we're taking care of ages?

Iris Waichler:

Well, one of the things that happens I think it's important to mention since the majority of the people we care for are our parents, is to think about this or that, that's how we lose them twice. We lose them because we see the person that we know changing, because of their medical condition or because they may have some dementia or Alzheimer's where mentally they change. That's an enormous loss for right there. And then the second time is we lose them when they physically die. I don't think people think about that all the time, but it is really important to think about. And then also you see them physically change. As they age, when people get older, they experience a medical problem. The thing about when you're older, it cascades.

Iris Waichler:

In my dad's case, for example, we were really blessed. We had him till he was 97 and he was in his 80s, climbing on the roof, cleaning the leaves out of the gutters. He was a really vigorous guy, much to our horror. He worked out regularly, he took really great care of himself. And then finally in his 80s, he moved to, by his own choice, moved to an assisted living place. But anyway, what happened with him was he got pneumonia. And then when he got pneumonia, he was in the hospital, he needed a pacemaker. And then when he got the pacemaker, he had another issue that came up and he couldn't swallow. This is what happens when you're older and particularly for older people that are not mobile and trapped in their beds. They lose muscle mass. They may have skin breakdown. It's one thing after another.

Iris Waichler:

And so even as a caregiver, when you prepare to take care of someone for a particular reason, other things occur that you don't anticipate or that you don't expect. And so that's a really important piece of the caregiving with people that are getting older. And the other piece I want to mention too, as people age, we need to be much more attentive of them too as their adult children or as potential caregivers. If your parents are at home, some things to look for is changes in personal hygiene. Also cluttering, also bills not being paid. Also forgetting that we had a phone call about something or forgetting a birthday. Looking at the physical layout of their home, and other issues, it could be safety issues for example. In my dad's case, someone I saw regularly, I started to notice subtle changes with him.

Iris Waichler:

I noticed we took a walk and his balance was a little off. I noticed that he'd forgotten a couple of things in a conversation. I noticed that his endurance was off too. He didn't notice any of that. And that's another important thing I want to say. Sometimes your aging loved ones don't see what we see.

Ben Smith:

Sure.

Iris Waichler:

I was taking a walk with my dad and I noticed these things and I was concerned enough and he trusted me enough. We had a great relationship. I said to him, I think we need to go to the doctor. We went to the doctor. Now, again, he thought he was fine. He was humoring me and his doctor was my doctor, someone I'd worked with at the hospital. We knew each other a long time. He's interviewing my dad, I'm behind him. And he'd say to my dad, are you doing well? And my dad kept saying yes, and I was behind signaling, no, this isn't the correct answer. Doctor asked him to take off his shirt to test his blood pressure. And my dad had a watch on his wrist and a watch on his elbow. And I said to my father, why are you wearing two watches? And he looked down and he said, I have been looking for that watch for three weeks. I'm so glad we got here.

Iris Waichler:

The doctor told us to immediately go to the emergency room. We did. From the emergency room we went in the MRI and the MRI discovered he had a brain hemorrhage. Went from the MRI to the ICU and he had brain surgery the next day. It was just little things that I noticed in spending time with him. That's what I'm saying, as people age things do happen and do change and it's really whose people that are around them regularly to just look for things. Also if there's no food in the fridge, for example, or thinking about safety issues, are they safe to be cooking? Are they safe to be standing? If you're living in a home with stairs, is your loved one able to climb up and down the stairs safely? All those kinds of things are really important.

Abby Doody:

And so going along with what you're just talking about, how long is the average role of being a caregiver? How long does that usually last?

Iris Waichler:

Well, about 30% of people take care of someone for a year, and then it gets a little higher, 24% care for more than five years and 15% provide care for more than 10 years. And that's those cascading things that I'm talking about too. And also if someone has a degenerative or progressive medical disease, like a neurological disease, obviously then you need to prepare for it being a more long term situation. But it's really important for people that are potential caregivers to have that medical information, to ask those questions so you know what to anticipate, what's realistic, how do you need to plan. Those kinds of things are really important to have in place before you jump into the caregiving role, so you're prepared as best as possible.

Curtis Worcester:

This is a good segue here. Speaking of people who become caregivers, something the three of us have seen with our clients who become caregivers, is that they just get so invested in that person they're giving care to, that they sometimes tend to forget about themselves, whether it's physically, mentally, emotionally, and ultimately that can lead to burnout. We think, something we assume there is, they're almost scared to ask for help. We know that something you talk about in your book, “Role Reversal: How to Take Care of Yourself and Your Aging Parents”. But so I guess what I want to ask you is, how can caregivers stay mindful of burnout and what are some ways that caregivers can avoid burnout?

Iris Waichler:

Burnout is the number one issue for caregivers. Part of that is 65% of caregivers are women and women are notoriously bad at taking care of themselves. Curtis, I think you're absolutely right, people aren't willing or able to ask for help. And that's a main issue. They feel guilty for asking for help because they feel that means that they failed in some ways as a caregiver. Sometimes the person they're taking care of says, I don't want a stranger coming in. I only want you to help me. And so that's a huge issue as well. But one of the things that caregivers don't do is they don't pay attention to their own bodies and their own minds. I think you alluded to this at the beginning, Ben, but what happens for caregivers in physical symptoms that occur and things to look for, are things like digestive issues like your gut, headaches, body aches, and more physical problems than normal, because your immune system gets affected by caregiving too, because you're not, you're not sleeping.

Iris Waichler:

You may not be eating properly. I remember laying in my bed, looking up at the ceiling, waiting for a phone call because inevitably the calls came about my dad between midnight and 7:00 AM, the emergency calls. So I couldn't sleep, which leads me to the other issue in terms of burnout, and that's the emotional or psychological piece of it. For caregivers the two top symptoms that they have are depression and anxiety, because it's just so overwhelming. There's that grief that we talked about a little bit earlier about losing a loved one and seeing them change and not being able to help them or stop the illness the way that you'd like. The third thing I want to mention is behavioral caregivers that are burned out, they will notice that they become angrier quicker, they are more irritable.

Iris Waichler:

And so if you see behavioral symptoms like that, it's really important to pay attention to all of that as a caregiver. And to tell yourself that as a caregiver, if you're not well, then you can't be a good caregiver to the person you're taking care of. As you said, Curtis, being able and willing to ask for help is really important piece of this and giving yourself permission to do that without guilt. The other piece of it is, and this is super hard for people, is to say no when you're asked to do something that you know you can't do. People aren't able to do that as well. There are things that need to be done that we don't have the training for. If someone needs an IV, if someone needs skincare, those are things that the majority of people don't know how to do. That's why there are home health people. That's why there's healthcare professionals to come and help with that.

Iris Waichler:

And so it's really important to be able to do those things. I think most of all, asking for help is a huge piece of it and acknowledging without guilt, that what you want to do isn't what you're able to do and not being angry at yourself for that.

Ben Smith:

Iris, I guess what's an interesting point you're bringing up is, you have and maybe there's a tragedy of irony that's happening here, right? Here you have someone that's aging and is declining and is need of caregiving. And it probably is, and we've covered this with other guests, there's a resistance to accepting help, because it feels to them a loss of independence, right? It feels like, I really by saying I'm declining here and here, or I'm really resigning to a reality, but in my mind, if I resigned to that reality, I get to keep independence because I don't have people checking in on me as much and I can do more of what I want to do. They view this as getting into this, accepting more help is going to be more prison like and just being dependent on everybody for everything.

Ben Smith:

But what you also made the point of, hey, the caregiver themselves that's giving the care is also saying, hey, I feel I should be all encompassing and be able to do all these things. I really don't want to ask for help either. It's like, everybody's just not wanting to ask for help. There's this loss of communication that's happening here that we're really not willing to admit. We're not willing to look to overcome that. I think what you're trying to say in a lot of your conversations here with us is, hey, just being able to say, hey, I need help. It's a really big step towards getting to those ports where we're all healthier and a little bit more imbalanced. You brought up one thing I want to ask you a question about.

Iris Waichler:

Sure.

Ben Smith:

My grandmother came down with dementia and it was a very, and it felt it was a three month, just really rapid decline. Of course you're seeing signs maybe, you look backwards once you see that happens, you look back a year or two and you go, man, there were definitely signs. It was there, it was slowly progressing, but then it just rapidly snowballed down the hill. It's just tremendously sad to see somebody you love and they're really just seeing themselves just lose independence. And as you mentioned, that grief. I guess what I really want to ask with you is, how do we ourselves as caregivers, right? We're providing the care to somebody. How do we cope with that grief? How do we cope with that emotion as we continue to see that our loved ones decline?

Ben Smith:

Because it's just tremendously sad to go, just from an aside too, from other family members that would step in and provide care. Some of them just couldn't cope and it just felt they had to retreat from the situation, because if they went to the situation itself, it was just so tremendously sad for them that they just couldn't handle that emotion and it was just better for them to just be a way completely. And again, we all cope with that differently, but how do you see people cope and what are some strategies to maybe still provide care, but also dealing and handling that grief?

Iris Waichler:

Yeah. That's such a great question. Thank you, Ben. I think a part of it is, people agree to do things with a good conscience and want to help. And like you said, they step in and that grief is so overwhelming as they see their loved one changing, that they can't do it, that they have to step back. It's really important to have a team of people in place and respite care is another way to prevent the burnout. Having identified people in your immediate family that has a certain skillset and tap into that. My brother's not a hospital guy, but he was there to help my dad with other things. And so in terms of the grief though, it's really important to acknowledge all the aspects of grief. What are the losses associated as you see your loved one changing like you described your dementia with the grandmother?

Iris Waichler:

It's an enormous number of losses. It's the loss of personality. It's the loss of the memories you had together. It's the loss of that relationship. It's the loss of their physical and emotional condition. Of course there's grief tied up in all of that. But I think it's important to give yourself permission to grieve those losses, because if people swallow the grief or don't acknowledge it, it comes up in other ways that can interfere with caregiving and also interfere with the quality of your personal life as a caregiver. Along the way, every step of that way, caregivers need to have somebody that they can talk to. It might be a family member. It might be a friend, it might be a priest. It might be, you need to see a counselor. And also another piece of it to help with that, that's really powerful, and it really helped people during COVID when we couldn't get out.

Iris Waichler:

We're so lucky in that there are incredible caregiver support groups online. At three in the morning when you feel you're really going to lose it, you can go online and find a chat room or a support group. Family Caregiver Alliance, or the National Alliance of Caregivers have sites that offer support groups where people can go. I think it's really important to talk to other caregivers to understand that you're not alone in feeling this way and that you're not less of a person for feeling this way or inadequate in some ways. Sometimes a grief turns into personal blame because you feel you can't do, be in 12 places at the same time. And so it's important to find other people that identify with you and can be there with you and normalizes those feelings of grief and loss and inadequacy and anger, and the things that you described Ben.

Iris Waichler:

And also connecting with other caregivers is a great way to get tips, because you say I was worried that mom was going to fall when she got up to go to the bathroom and someone might say, oh yeah, I got this mat that we put right by her bed and when she stands up, a little alarm goes off and I know that she's awake. It just helps you feel less alone because that's one of the things that happens for caregivers, it's such an isolating situation and you feel so terribly, terribly alone. It's really important to incorporate that in your caregiver plan, to allow times for yourself whether it's taking a hot bath, whether it's taking a walk, whether it's talking to a friend, whatever it is, you include moments where you can have joy.

Iris Waichler:

And you can build those moments into your caregiving relationship too. Caregiving can be really challenging, but it can also offer the most beautiful, intimate moments with people. It can help people rebuild relationships. If you could put things in your caregiving relationship, you described your grandmother with dementia. One of the things that research has found is that, that deep memory music is an incredibly beautiful tool to use. And so playing a song that was your grandmother's favorite song, even people with dementia who have no memory, it's deep embedded in the brain, and they will suddenly remember the words to that song and you can sit there and sing it together, and that can create beautiful moments.

Iris Waichler:

Even going out, if you have someone who loves flowers and they can't walk, but maybe you have a garden. Creating moments like that can be so beautiful, so rewarding and can help deal with the grief and the loss that we've been talking about.

Ben Smith:

You mentioned that, both my grandparents were big Elvis Presley fan. That was a very easy thing to go into and turn into, is play a little Elvis and that would stir both of them on that. You're absolutely right. Sometimes again, you'd get that moment where they would come back a little bit, right? And you'd see some signs just from that music or face or some cue would get them going. Iris, that's a really good point.

Iris Waichler:

Reminiscence therapy is a really beautiful tool too. Just having photographs of family members or telling stories, bringing up stories about family members, that's a beautiful thing too. And again, those memories are still there. They just need a trigger. If you have photographs of someone, that can be a cue. Or seeing an old movie that the person loved, can be a really joyful, beautiful experience too. There are a lot of creative ways that that can help the caregiver and help the person that's being cared for and create beautiful memories. We have dear friend, this was one of the peers that I helped take care of. He loved music and he had a pile of CDs, I'd go over every day to take care of him. And I'd say, what music are you in a mood for today?

Iris Waichler:

He had a very aggressive brain tumor. And so spending time with him, he chose the music and then we would sing. And then we would talk about where we were at the time when we first heard it. It created beautiful moments.

Abby Doody:

That's really wonderful. And so we've also heard from several clients who when their loved one passes away, right? That they've been caring for, for maybe years at this point, that all of a sudden they as the caregiver lose their sense of purpose. And so how do you help that caregiver in that post caregiving state rediscover their sense of purpose in life and grieve, and then move forward into this new part of their life?

Iris Waichler:

I think we referenced earlier that the isolation piece of caregiving, and I think one of the ways to help move forward, it could be baby steps, picking your best friend or someone that you feel comfortable with, but reducing that isolation and reconnecting with people is really important. And also identifying someone in your life that you can talk with, it can be a counselor, it can be a friend, it can be a priest. Again, someone you can talk candidly about. And then again, baby-steps, re-establishing an old hobby that you enjoyed. Reminding yourself about what things brought you joy, what things brought you passion. Maybe you played guitar and you couldn't do that as a caregiver, picking up your guitar again, and slowly maybe going back to church or whatever.

Iris Waichler:

Things that will nourish your spirit, nourish your soul. And also journaling is a really nice thing for people too. Of course, I'm biased about writing as a writer, but that's a great way to work through your grief, to talk about things that you're concerned about, setting goals and having that as a place to give yourself purpose and eventually creating projects that you enjoy. Projects too that have a beginning and an end, so you feel you have a sense of achievement and accomplishment. That feels really good.

Curtis Worcester:

Iris, I just want to flip the coin for a second here, to this point we've been talking a lot about the caregiver themselves, and I want to talk about the person who's in need of the care. In previous episodes of our show, we've talked a lot about solo agers or other populations who may not have kids or immediate family members that can step right in as a caregiver as we age. I want to ask you, what advice do you have for someone who doesn't have that immediate person already in their life established to step in as their caregiver?

Iris Waichler:

Well, it's a great question, Curtis. And like you said, there are people that don't have. There a number of opportunities. One thing is to think about immediately who's nearby, a neighbor, a friend, someone from your church or your temple or whatever religious organization you're a part of. Also if you're a senior, you can go to your local senior center or area on aging, contact them for advice and information. Another really valuable resource that people don't know about are people that are called geriatric care managers. A geriatric care manager is someone like me, who's a social worker, or sometimes they're a nurse who have expertise in aging, because a lot of the people you're describing are older people. They will come in and they will do an assessment with you, find out exactly what you need or make recommendations for you about what you need.

Iris Waichler:

And they'll go a step further and they'll say, okay, you need assisted living. These are the places in our area that offer that. These are the questions you need to ask. It's a beautiful thing. And so I would definitely recommend them. There's a site online called aginglifecare.org. And all you need to do is put in your zip code and it will tell you people in your local area that could do this. I would say that's a wonderful resource that I would really strongly recommend. The beauty of that is, you design an individual care plan with them, so they can be a part of whatever you need for as long as you need it. If something is set up and it doesn't work, you can always bring them back into the picture to help.

Iris Waichler:

Those are some really important places to go. Family Caregiver Alliance on network also has information. Alliance for Caregiving also has resources, information, and education on their sites for people of all ages. If you're a veteran, I would go to your local veteran VA hospital because they have a whole network of people in places that you can turn to. I just was going to say too, you can always contact your doctor and they may know, or a local hospital, they may have information about programs as well.

Ben Smith:

While you're doing that Iris, I just has had to go to Aging Life Care. The aginglifecare.org, it's like, yeah, that's pretty slick. You just do zip code and boom, there's some people that pop up that can help you with that. That's pretty neat.

Iris Waichler:

Magic of the internet.

Ben Smith:

I want to ask about, really our next part was again, Iris and all your written pieces. You really referenced that it's important to have the caregiver conversation, right? I think that for maybe some of us, you're stepping into a caregiving role, it might be tough to have that conversation. Can you talk about what that is? What things we need to talk about within the caregiver conversation, but also what do caregivers need to know to be well-positioned to step in when the time is right? Because I think when is a really important question here, and as we alluded to it previously, there's just sometimes as resistance on when that next step is necessary or when I need help, because it's this fight against this thought of being independent or dependent on somebody else.

Iris Waichler:

Yeah. I couldn't agree with you more Ben, there's a number of aspects to that. The first thing is, no one wants to have that conversation. The reason is, you don't want to think about someone you love needing help and getting sick. And the other piece of it is, that reminds us that someday we're going to get sick and someday we're going to die. And so no one wants to think about their own mortality. The other piece of it is just like what you said, it's that boundary thing. Respecting people's boundaries. It also opens up a door. When you have this conversation, you need to talk about things that are uncomfortable to talk about. Children don't want to talk to their parents about how much money they have or what their insurance is. Not having the conversation is probably one of the biggest mistakes that caregivers make.

Iris Waichler:

The second thing is they wait too long to have it. What I would say is, when we learn this lesson with my mom, unfortunately, because she was so young, we didn't have that conversation. She got sick when she was 52, she was perfectly healthy. Having the conversation is a gift biggest gift as an adult parent, you can give your adult child, because what happened with my mom was, she got very sick and her cancer metastasized to her brain and she couldn't tell me what she wanted. And so my dad came to me and said, you're the medical person. You make all the decisions. And so I was having to make care decisions for her, not knowing what she would have wanted. What you want to do is have the conversation when someone is young and someone is healthy, that's number one, because then you know the information that they're giving you is real and that it's accurate.

Iris Waichler:

And you want to come from a place of love and collaboration, not confrontation. So you don't want to say, when you get old, this is what I'm going to do. What you want to say is, I love you. I really care about you. I want you to have a quality of life. I want you to live as long as possible. And I want to work with you to understand what we can do to make that happen. Sometimes you can't wait for an opening, because that door may never open, that's number one. You may need to be the one to bring that conversation up if you're talking to your parents. And it's not a one-time conversation, it's a process. If you open the door and the door slams in your face, it hasn't really slammed, the doors open a little bit and you can go back and refer to it then.

Iris Waichler:

But what you want to do is say, ask questions like, I'm really interested in knowing when you get older, how you see yourself aging. Do you see yourself staying at home? Okay. And if it's a home where the bedrooms are on the second floor. Okay. Let's think about what kinds of things we could do so that you can be safe and stay here. Are you thinking that only family can take care of you or are you okay with us bringing in professionals if the time comes, on opening the door like that and then seeing where it goes and then being flexible and not taking it personally, if your parents says I'm never going to die, so let's not talk about it. Because whether you realize it or not, that door's been opened and it's a conversation and you can't go back to.

Iris Waichler:

It was such a contrast between my mom and my dad and I had the whole conversation. I knew everything about exactly what he wanted and it made my role as his primary caregivers so much easier because I understood. Also it's very important to have the legal stuff in place too, legal documents. That's another thing that people don't do. That's beyond a will, that can be a healthcare proxy, so who's going to be making decisions and including information like, if I'm on a ventilator or if I can't communicate, this is what I want. And people are terrified about doing that stuff, but it's such a gift to the person that needs care and also the person that's the caregiver. I call it a map, but having all this information is really important, knowing about the finances, so that if you need to bring somebody in what your insurance covers, what doctors you want to use, all those kinds of things.

Iris Waichler:

And the other thing that people don't do, is they don't update that information. They have it, and then the person that was going to be the caregiver moved to California and all of a sudden now you're still, you have to revisit it from time to time too. But I have to tell you when my dad died, I had a key to his safe deposit box. And he said, when I die, you get there right away, because I don't want the government coming in. He has this whole list of things he wanted me to do. And what you were talking about Curtis, moving from that caregiver role on, he made it so much easier for me. Because he gave me a list of tasks and things to do, and he gave me some initial purpose and then when I was finished with the things that he asked me to do, then I could move on, and it's really, really important.

Abby Doody:

Is there a consensus as to when is the best time to step in to this role that you just described as being a full time caregiver? And then how does that role either expand or shrink over time?

Iris Waichler:

Well, in terms of the timing of it, I'd say it really is individual what I described earlier, with my dad, I noticed his hygiene was slipping. I noticed, he was a real fastidious guy and his hair wasn't combed. He was wearing clothing that wasn't washed. The personal boundaries and what you were talking about, Ben, that independence dependence thing is so tricky. In my dad's case, we wanted to respect his privacy. We didn't want to be giving him a shower. We know he didn't want us to be giving him a shower, but he was living in assisted living. So what we did was, unbeknownst to him, we paid for people to come in. He thought they were coming in because they really liked him and they wanted to spend time with him. But while they were there, he would take a shower.

Iris Waichler:

Being creative like that. We respected his boundaries. We knew that he was safe and we knew that people were there watching him when they needed to be. Watching those cues, like I talked about earlier and being proactive is really important. Trying to honor boundaries as best as possible and then moving forward from then as things change and perhaps get worse, upping the level of care.

Ben Smith:

Iris, again, you've made the point a couple of times about respecting boundaries and it's tough. Just from a family experience and just seeing on my in-law's side, I can see why my wife's grandmother was just very resistant too. She was okay with getting help while she was in her home, but when it come to even having conversations of, hey, I'm burning you out. You're my daughter, I'm burning you out. I'm really seeing that. She required more and more, almost constant, immediate attention throughout all hours of the day and all hours of the night. It was really burning out really all of the siblings together helping in this situation. It felt like from just what I see is, maybe they overly respected the boundary, right?

Ben Smith:

They're saying, hey, I hear her saying she really doesn't want to move out of the house. She really needs this full time care, which we're not able to provide. We're trying to do it, but she says, she's not ready to move into an assisted living facility. She's saying, it's October and I just had my birthday. I really want to be for Christmas one more time in my house. There's always a delay in a stall that's happening. Meanwhile, here's the kids giving the care and they're going, geez, I woke up at 2:00 AM. I had to go over and run over there. She couldn't find this or she thought she heard somebody outside the house, so we're calling the police. All these things are going on. It's just like, and they're, again, sandwiched in terms of taking care of their own kids and all the other stuff that's going on with their own careers.

Ben Smith:

I guess my question too about this boundary, respecting those boundaries is, at what point is it respecting boundaries versus, but you also have to respect your own boundaries here too and making sure you're balancing that between it, because it feels like you can be in a no win situation.

Iris Waichler:

Yeah. Well, I'm sure there's a lot of your listeners that are going to go, that's me, that's me for many years.

Ben Smith:

That's right.

Iris Waichler:

Totally, totally important issue. I can tell you personally, my dad was still in his apartment, in the assisted living. And I got so many emergency room calls that I felt like norm walking into cheers. I'd walk in the emergency room and people would say hi, Iris. And I knew the names of all the doctors. That was the point. And so there are a couple of things you can do, answer to your question, Ben. One is, maybe the decision shouldn't come from me. You need to get a doctor to come in and say to your loved one, it's not safe for you to be here anymore. Or that geriatric care manager that we talked about, a mediator type of person, someone that they don't perceive has an angle, but can accurately say.

Iris Waichler:

Let's face it, families are families and sometimes parents don't want to listen to their kids or wives don't want to listen to their husbands or whatever. As I said, you bring all that family stuff with you. Bringing someone in, it might be a trusted neighbor, whoever someone that you know they like and respect, that they can listen to. There are little things you can do like if the loved one is at home and there's safety issues. This again came up during the pandemic. Technology is a beautiful thing. And so a lot of people, because they couldn't physically be with their loved ones, there's all kinds of devices out there where if someone falls, you can know about it, if someone moves from one room to another, there's all kinds of things to monitor safety. But the message, again, you need to continue to relay is, I love you with all my heart, but safety has become an issue.

Iris Waichler:

And you bring somebody in that has a little more credibility than you do with the person you're talking to. And you move from there. In my father's case, we eventually had to say, you've fallen so many times, you've done this so many times. He kept pulling out his catheters and it was really bad, really bad. That was the point in time when we said we need to up the level of care and we had him move to a skilled nursing facility. That's what I would recommend.

Ben Smith:

Iris, I want to ask about that, because again, he's probably, again, he's pulling the catheters. He's obviously not safe. How did he take that? Right. There's got to be this, the caregiver conversation might be elevating here a little bit more of, hey, maybe you will have to be a little bit more firm with why things have to change and where they have to change out, I gather. Right?

Iris Waichler:

Yeah. Again, what I said about the caregiver conversation is, it's not a one shot deal. And as we talk about the beginning of our interview, people's medical condition changes or their emotional condition changes or circumstances change. And so there's always that caveat. Let's talk about it in a month. Let's talk about it in two months, let's review where things are at. Always put that trap door there. In my dad's case, what we said to him was, we used the doctor. I called the doctor again and he said, listen, you're falling. These things are happening. It's a safety issue. I used my new friends in the emergency room too, to help reinforce what we were saying. And then I said to him, you need physical occupational therapy, let's go to a place that offers that and let's see where things go and move on from there.

Iris Waichler:

And in fact, we did go to a place that he was not particularly happy with. One of my siblings said, I'm not sure about this place. I said fine. We ended up finding another place because he said, I'd like to go somewhere else, and he loved it. That was the place he ended up dying. My siblings were all happy with it and it turned out to be a really good thing. As much as possible, as much as reasonable giving people a choice, in my dad's case, when he moved to assisted living, my dad sold his house and he said, I'm moving in three weeks. Let's find a place. I need a place to live, you help me find it. I thought he was joking, but he wasn't. What I did was, I narrowed it down to two places and I took him with me and we had a meal there, because food was the most important thing in his life next to his family.

Iris Waichler:

He made the choice. I didn't make it for him. And so as much as possible giving the person you're taking care of, within reason of course, power and control. Because as you talked about Ben, that loss of independence, it's so hard. It's so hard. That's why it's so hard to get older people to stop driving, because cars represent independence for people. And that's why you have these fights with people about not taking their keys away. All these things represent independence. I think it's important to acknowledge them verbally. And just say, I know it's really hard for you to think about leaving the house, you've been here your whole life. It's really hard for me too, let's talk about what we can do to just make sure that you're safe as possible. And we'll include the things that are important to you in the next step, whatever it may be.

Curtis Worcester:

I like that. Iris, I have one final question for you on this episode. And it's going to rotate a little bit. Here we are on the Retirement Success in Maine Podcast. One question we love to ask all of our guests is, what is your personal definition of retirement success?

Iris Waichler:

Well, my personal definition is finding meaningful things to do in my life. And so for me what I do is, I wake up in the morning and this is going to sound funny, but I take a walk with my dog, which to me is so relaxing and I get up very early and I allow time for myself. I make a nice cup of tea and I do a jigsaw puzzle. The reason I do jigsaw puzzle is it's from my mind, it's a very quiet, fun way to work my mind and wake up. And then at the end, I have a really beautiful, completed piece of work. I play guitar. I started playing guitar during COVID and now I play every day and I hadn't touched my guitar for months before then. Bringing music back in my life. And writing, I love writing. And so I've incorporated that into my regular routine as well. I have many joyful moments and also spending time with family and friends.

Ben Smith:

That's great. And I'll add, Iris, being a podcaster extraordinaire here too, that you've been a wonderful guest. You really have been a treat to have on here, because, again, these are the conversations we need to be having. And these are the things that people I think are really struggling with, as we said, the level of reach and depth of people that are giving care and receiving care in this country. But globally, anyway, we just need to have these conversations. So someone that has the expertise you have, being able to share that wisdom with us, being able to share your personal experiences. We really can't thank you enough. This has been such a wonderful treat to have you, and what a wonderful show in our library too, to have. Thank you for being a wonderful guest.

Iris Waichler:

It's been my pleasure. Thanks for your questions and for allowing me to be on the show.

Ben Smith:

All right. Well, Iris, I appreciate the time and we'll catch you next time.

Iris Waichler:

Thank you. Be well.

Ben Smith:

Take care. I thought Iris Waichler did a really fantastic job today, right? The topic being, balancing caregiving for aging parents and taking care of yourself. Right? We didn't want this to just be one or the other. I think it's a partnership relationship that's happening there about somebody that is in need of care and somebody that's providing the care. I think sometimes which I like what her book is really talking about is, is taking care of both. Right? And having the conversation about that, I thought it was pretty important. So again, Iris, had a really good, robust experience. I thought brought a lot to the table today. As always to wrap up our shows, give a little bit of lessons that we took away from today.

Ben Smith:

I'll actually start this one. I'd like to just reference one thing. We were going to actually ask her or really talk to, we just didn't have time was, about resources locally that we can use around caregiving. And actually one of the things that we can go back to, if you go back way back in the library, to number two, we talked to Dyan Walsh, she was the executive director of the Eastern Area Agency on Aging, and she was referencing one thing I just kept on the Rolodex until today's episode was, they actually have in all the area agency on aging throughout the state, they have a caregiving support groups. You're giving care and you go, I feel like I'm an island. I don't know what I'm doing. I need to talk to other people. And maybe they're well, maybe they've already gone through this stage and I'm only on this stage and they're well past that.

Ben Smith:

You can talk to people that are also giving care or have gone through being a caregiver and maybe the person that they've taken care of has now passed away or not need of care anymore. Just getting in a support group and be able to talk to, I know Iris talked about Facebook groups or community groups online. Maybe that's helpful for some people, maybe it isn't. I know Mainers we have a lot of rural geographic issues here. Maybe that's a better avenue, is maybe online to do that. But I know for a lot of people they like to be social and meet new people and this is another way to do that too. I just wanted to talk about that, because I thought that was a really important thing to bring up, especially within Maine, that we just have a really great network of area agencies on aging. I would be remiss if we didn't bring that one up. Abby, from your end, what was something that you took away from today's show?

Abby Doody:

I thought it was really important when Iris brought up the fact that when people age and we're caregiving, often we grieve the person twice, right? So once when they tend to lose their personality, maybe they lose some of their critical thinking. Maybe they don't recognize us like they used to, their memories are gone and then again when they pass away. I think that initial grieving of their personality and the essence of who they are is not really talked about. I think it's very much underestimated how much that really affects not only the caregiver, but the family around that person who's aging. I really liked that she brought that up and said that we need to honor that grief and really work through it, because otherwise it can can spiral. I really liked that point.

Ben Smith:

And I'll add too is, again, if you don't address grief, sometimes there's going to be other coping mechanisms that come out. One is, maybe it's avoidance, maybe it's, you're less likely to provide care anymore, right? As she said, maybe you're going to become angry in other situations or with other members of the family. Again, I can see where, we've had enough either from the social worker's perspective or the therapy perspective from the psychologist. It feels like sometimes we just need to talk through these things and be able to recognize the feeling and then maybe talk about it, bringing out the open, I'm thinking about Bodhi Simpson there, really acknowledging things and bringing them out, allows us to really identify, talk about them and address them. I think that's a really great point. Curtis, from your end, what is something you took away from today's show?

Curtis Worcester:

Yeah, I'll piggyback on actually your takeaway Ben, the support groups for caregivers. Iris did a great job. I feel emphasizing how important it is for caregivers to care for themselves. I think clearly we talked about it. It's a big issue and a lot of people face this, but you get so focused on the person you're caring for and your own health may be declining right before your eyes and you're not noticing it, and that may lead to you maybe not being able to give the best care to the person you're trying to caregive to. It's just so important. I know it's tough and we all have situations, everyone probably listening has situations where they know about how difficult it is to step back and say, you got to take care of yourself, whether it's sleep or eating or just, Iris said she likes to get up in the morning and do a puzzle. That's her thing. It's just so important, I think for everyone involved to have the best care and she did a really great job isolating and pointing that out.

Ben Smith:

I think, again, the statistic that Iris shared with us, that what we had in the intro read was, 26% of family givers report their own health as fair to poor. Well, again, those are the ones that admit it, right? Maybe that number is pretty higher. But again, I could see where, hey, I'm between this responsibility and this other responsibility and caregiving. I don't have time to go cook for myself and to have a healthy, balanced meal. I don't have time to go do this. Maybe I'm grabbing more fast food than I ever have and I'm eating three to 4,000 more calories than I'm used to doing, whatever the situation is. I could see where, because we've heard this saying a lot in our podcast is, maybe you love them maybe more than you love that yourself.

Ben Smith:

Maybe caregiving is an act of loving them more than you love yourself in the moment. And because of that, you prioritize them that much, that you don't prioritize your own health or express yourself that self love in any way or enough way to take care of yourself. I think that's another way to say it, I guess, was the point of that today. But I think that's a really important point, is to find ways to address that and to improve over our lives as it were in a caregiving role. Well, again, I want to thank everybody for listening in today. We are at episode number 44. We're going to have more links to Iris Waichler's publications, her books, again, that Role Reversal: How to Take Care of Yourself and Your Aging Parents, we'll have a few of those links there.

Ben Smith:

So to access that you can go to blog.guidancepointllc.com/44. Again, for episode 44, you can go to that website, find our show notes, find the transcript, find links to Iris's website and some are for our publications there. We really appreciate you tuning in today. I think this is a really important episode and conversation to have. Thanks for listening in and we'll catch you next time.