April 18, 2019

Mental Health for Caregivers

Show Notes

On this episode, Chuck Gaidica is joined by Dr. Raymond Hobbs, a physician consultant at Blue Cross Blue Shield of Michigan and Barbara Steer, of the Area Agency on Aging 1-B. Together, they discuss the mental and physical stress of caregiving.

“People pour themselves lovingly into caregiving and then you think, ‘Oh, I couldn’t be feeling angry. I’m not tired. I’m not hungry. I can’t take time for myself. How can I go out with friends when my husband can’t enjoy a good meal anymore?’ People have these feelings and they end up getting isolated and that just makes things worse. A lot of feelings come up because of the stresses of caregiving.” – Barbara Steer

In this episode of A Healthier Michigan Podcast, we explore:

  • The mental and physical symptoms of stress
  • The importance of fully understanding a person’s disease/condition
  • Why you should set personal boundaries
  • Tips on how to avoid burnout
  • Using a primary care physician for guidance
  • External resources such as the “Powerful Tools for Caregivers” class via the Area Agency on Aging 1-B. For more information call 800-852-7795 or visit the website here.

Transcript

Chuck: This is A Healthier Michigan Podcast, episode 26. Coming up we discuss the mental health well-being of caregivers and ways we all can care for ourselves.

Chuck: Welcome to A Healthier Michigan Podcast, the podcast dedicated to navigating how we can all improve our health and well-being through small healthy habits, and guess what? We can start them today. I’m your host, Chuck Gaidica. Every other week, we’ll sit down with certified health experts from Blue Cross Blue Shield of Michigan and do a dive into all kinds of topics: nutrition, fitness, today caregiving and their mental health.

Chuck: On this episode, that’s what we’re gonna talk about. We’ve got two experts with us. We’ve got Dr. Ray Hobbs who’s here. He’s a physician consultant at Blue Cross Blue Shield of Michigan, a graduate of U of M Med School, board certified in internal medicine, geriatric medicine and palliative care. I want to come back to something in a minute, but he’s got a 4th degree black belt in jiu-jitsu, happens to play piano. These are both things I’d love to do. Dr. Hobbs, I’m coming back.

Chuck: Barbara Steer is here. She’s with the Area Agency on Aging 1-B. We have to throw the letters in, right?

Barbara: You got that in.

Chuck: But you know what’s good about this, is that you’ve got such experience, you co-facilitated Powerful Tools for Caregivers.

Barbara: Yes.

Chuck: So you’re gonna have a different level of experience than I have, and what’s been going on in my family. We’re glad you’re both here. Barbara has helped along the way with people-focused initiatives as a physician assistant, social worker, and she’s a baker as well, so she’s got her things that she does. How about jiu-jitsu?

Barbara: No.

Chuck: No. Dr. Hobbs, tell me. Black belt in jiu-jitsu. This wasn’t when you were a kid, this is in recent life.

Dr. Hobbs: I turned 66 this year. About 10 years ago, I decided I needed to get back into shape. The only sport that I ever really enjoyed was the martial arts, so I started jiu-jitsu when I was 55.

Chuck: Wow, and you just got your 4th degree.

Dr. Hobbs: Yeah, I got my 4th degree in September.

Chuck: Barbara, I don’t want to say it. I’m not gonna look right at Dr. Hobbs. Let’s be nice. Be nice to the man who’s sitting to my left. All right. Good to have you both here.

Dr. Hobbs: Nice to be here.

Chuck: This is a topic that’s very dear to me, because I’ve been dealing with the aging of my parents. We hear this a lot. As a baby boomer, you hear a phrase that’s been bandied around, the Sandwich Generation. Sometimes your kids go off, if you have kids, and they bounce back. They start living in the basement or they’re having issues within their own lives, and then your parents are aging and you feel like you’re sandwiched in.

Chuck: While that’s an easy visual, it doesn’t always work that way in all families. So much about caregiving that we sometimes don’t think about, especially upfront, is this idea that you have your own mental health issues to deal with as you’re struggling to deal with the care for somebody else. Dr. Hobbs, let me start with you. What are you seeing in your consultation now, but even in your practice, that helps folks like me and others listening today, this idea of being a caregiver, because sometimes it’s tough stuff.

Dr. Hobbs: I think the first thing to realize about being a caregiver, is if you just look at the demographics of aging, you find out that the fastest growing subsegment of the population right now is the number of people over the age of 85, which means that when you really think about it, many of us are gonna wind up being caregivers and eventually we’re gonna be cared for too, so it’s a very important topic. It’s complex. It affects you emotionally. It can be very, very stressful. Sometimes it’s one of those things where when it occurs slowly, you don’t even realize the level of stress that’s going on. That’s why it’s important to think about these things and to address it the way that we’re going to today.

Chuck: Barbara, you see this. I mentioned mental health, but the stressors that we can have as caregivers can initiate physical symptoms as well.

Barbara: Right, right. In the Powerful Tools for Caregivers class, we talk about, what are your symptoms of stress if you have stress? It can be mental, racing thoughts, crying, emotional, trouble sleeping, tense, so it’s the gamut: physical, emotional, mental.

Chuck: I’m sorry, but you know, the caregiving component, it may be that you are physically lifting somebody. It’s not just the debilitation of the person you’re watching who could be disappearing right before your eyes.

Dr. Hobbs: Right.

Chuck: Right, so you’re really getting involved with sometimes, all of your being.

Dr. Hobbs: Right.

Chuck: Yeah.

Dr. Hobbs: And then, the physical aspects of stress that can occur: migraines, back pains, all kinds of things like that. I mean, stomach upset, anxiety, all the things that go along with stress. I mean, that can affect the caregiver.

Chuck: How important is it that we understand, whether it’s dementia, Parkinson’s, it’s someone who is debilitated, maybe for a lengthy period of time, but there’s now demise. It could be a quick thing. How important is it that we understand what the person is dealing with, who we are now a caregiver to?

Dr. Hobbs: It’s really important for a variety of reasons. For one thing, whatever the disease is, if you’re going to be caring for this person, you need to know about the drugs that they’re taking so you can give them the right way, make certain they’re taking them. You need to know about what the course of this disease is. A great example’s Alzheimer’s disease, or dementia we’ll say. Alzheimer’s is one specific type of dementia, the most common type that we face though.

Dr. Hobbs: You can have a patient with Alzheimer’s disease that’s very early on, and are very functional. Then over the course of the next 10 years, but it could go up to 20 years, you’re gonna see the gradual demise of that patient with loss of memory, functioning, and things like that, that can be very hard to deal with. Many people, when they have a loved one who’s ill, it’s like they’re entering like a black box. They don’t know what’s gonna happen, what’s gonna go on.

Dr. Hobbs: That’s why it’s so important for them to know what happens with the disease. If there’s a number of siblings involved, for instance, as caregivers, it’s important for everyone to be on the same page because it makes it easier for them. ‘Cause there can be so much stress when you don’t know what’s going to happen and what’s going to go on. You need to know what the medicines are, what they’re being given for. You need to know what can happen in the future, the things that you might be able to do. Like, as an example again with Alzheimer’s disease, one of the problems with Alzheimer’s disease is loss of short term memory. Long term memory persists for a very long time. Short term memory goes very quickly. So they can tell you exactly what they did in 1952, but they can’t tell you what they had for breakfast today.

Chuck: Or sometimes know who you are. Talk about tough.

Dr. Hobbs: Absolutely.

Chuck: Barbara, in these Powerful Tools, is one of the ways we are empowered, is by and through information?

Barbara: Definitely.

Chuck: Because we can reach out to different organizations. In my family’s life, we’ve dealt with in recent years, aging parents and for one side of this, it has been a dementia, Alzheimer’s issue. But there’s the Alzheimer’s association and they have their own counselors. Then we have your agency, which is nationwide we should point out. It’s not just here in Southeast Michigan. Is that part of it, just being informed?

Barbara: Definitely. I mean, Dr. Hobbs pointed out the importance of knowing about your care receiver’s illness. Alzheimer’s and dementia, really good template for a chronic disease. It’s different from acute. There’s not gonna be a cure. There is a new normal with a chronic disease. We’ve had people in our groups, often it’s because of dementia but it’s other times severe disability from arthritis, bipolar illness, people with strokes, people with serious consequences of diabetes, Parkinson’s disease, many, many illnesses. The more you can know about that illness, it helps you know what to expect.

Chuck: I have heard a phrase that I have used. I know I’ve bandied it around with my own family, because there are siblings, so we have the dynamics I’m relating to in my own family … that when you become a caregiver, oftentimes you have to consider the analogy of being on an aircraft. If there’s an emergency and the oxygen masks drop from above, put yours on first before you try to save the person next to you. Because if you’re going under and you’re not breathing, there’s no way you’re gonna help a child who has no idea what to do. While that can sound harsh, I wonder how important it is for us as caregivers to consider, we do have a responsibility for self-care, right, to ourselves, to whatever extent that is. It doesn’t mean you have to put the mask on first, but …

Dr. Hobbs: Absolutely, but there’s another part of it too, which … ’cause I’ve had this kind of conversation with a lot of caregivers because they’re empathic, they’re loving, they’re kind, they’re taking care of their mother, their father. They will do anything for them. Then sometimes they don’t take care of themselves and I have to tell them, “Well if you’re not taking care of yourself, and something happens to you and you’re no longer here, who is gonna take care of your loved one?”

Chuck: Right.

Dr. Hobbs: You have to take care of yourself, and then you can take care of them.

Chuck: That’s tough stuff sometimes, because the choices you’re trying to make involve the person you love and you want to care for. You’re thinking, “I’ll eat later. Don’t worry, I’ll just stay here later than I thought I would.” It’s hard for some to create the boundaries that allow them to go home and take care of a husband or a wife and children and business and go to work, right?

Barbara: Right. People pour themselves lovingly into caregiving and then you think, “Oh, I couldn’t be feeling angry. I’m not tired. I’m not hungry. I can’t take time for myself. How can I go out with friends when my husband can’t enjoy a good meal anymore?” People have these feelings and they end up getting isolated and that just makes things worse. A lot of feelings come up because of the stresses of caregiving.

Chuck: I’ve seen caregivers also run into this issue, where their entire identity has shifted to being the caregiver, even though there may be others. Then when that person either moves to a new stage or is debilitated or sadly passes away, your identity is still wrapped up in being the caregiver and you’re not caring for them-

Barbara: And then what?

Chuck: Yeah, yeah.

Chuck: So how do we recognize the stress that may be imposed on us, as caregivers, Doc?

Dr. Hobbs: That’s a good question. The first thing is, like I mentioned earlier, it can develop slowly. I think it’s important … and you used the word boundaries. That’s really important because it’s important for us to set boundaries in terms of our behavior in the sense that we need to carve out some time for ourselves so that we can prevent these things from happening because when we don’t do that and we become so focused and we become the caregiver … I use that in the sense that you’re like nothing else. That’s your big job in life. When that happens, at some point you don’t become that effective as a caregiver because you’ve lost a lot of who you are.

Dr. Hobbs: You need to do things to maintain who you are as an individual. That’s why these things become so important, when you set time aside for yourself and you set aside a time for breaks and you also set things up so that you’re not the only caregiver. Because maybe you could get someone else to come in to help for four hours on a Saturday or something, so you could do something else. Those are things that you go, “Well wait a minute. Mom or Dad’s got this horrible disease. And I’m gonna take these four hours off?” Well yeah, you have to do stuff like that for yourself because if you don’t like that, you start losing things.

Dr. Hobbs: When you talk about stress, it also leads into burnout which is something that we run into a lot of times with the helping professions: doctors, nurses, counselors. But you run into it with caregivers a lot and it looks an awful lot like depression. It can be tied in with that. What happens is, you have problems with … You can have somatic or bodily problems like headache, muscle aches, muscle tension, things like that.

Chuck: Binge eating, or not eating, right?

Chuck: It can lead to things.

Dr. Hobbs: Oh yeah. With depression, you can do one or the other. Some people overeat and other people hardly eat and they lose a lot of weight.

Chuck: Yeah, I’m an Oreo cookie guy. If life is too stressful, you can find me there.

Dr. Hobbs: Sleeping … You know, you get depressed, some people sleep all the time. Some people have insomnia. It’s opposite poles of the same problem. There’s a medical word, anhedonia, which means loss of pleasure. All of a sudden, things that you do like very much don’t bring you pleasure any more. It’s like the world, instead of being in colors, is now kind of gray. Black and white and gray.

Chuck: Is that depression, or is that still something completely different?

Dr. Hobbs: That’s depression, but you know, depression and burnout are related. They tend to look a lot alike, except you can look at caregiver burnout and say, “Well the reason that this is going on is because of all the stress that’s going on with this particular loved one.” Depression can occur for a whole lot of reasons and sometimes it doesn’t even need a reason. It can be like a biochemical thing.

Dr. Hobbs: But the problems though, are very similar and they look alike and they behave a lot in many ways. Then as it progresses, you get yourself into a situation where your world becomes more narrowed. Like I said earlier, it’s like you lose a lot of the things that brought you joy. You’re not doing that now, and you’re not doing it. You’re getting isolated. You’re getting more stressed out. Eventually, you start feeling hopeless.

Dr. Hobbs: Then when things are getting like that you’ve got to ask yourself … and it’s easy to do this when you’re stepping back from it, like I am right now, just talking about it, but when you’re the individual and the caregiver, you’re in the midst of it and you might not even be aware of what’s going on.

Chuck: Family and friends mean well, but almost they want to say to you as a caregiver, “Snap out of it. Go find some joy. Go for a walk. You’ll find …” I didn’t really think of this being a clinical thing, that there could a reason why … Like that Claritin commercial, you know, where they peel the gray layer off and everything comes out into color? That you could get stuck in this world where everything just looks a little gray. You know, because you’ve just gone so deep into this caregiving.

Dr. Hobbs: Right, and you’ve stripped a bunch of things away from you because things that you would normally do, well you don’t have time to do that. You normally go see your friends for dinner on Wednesday, well you’re not doing that anymore. I mean, you like watching the football games. Well, you can’t. You’re not doing that now either. You don’t do this either. All of a sudden, it’s like things are kind of constricting on you.

Chuck: So, Barbara, the Powerful Tools for Caregivers … I’m picturing my red metal old toolbox-

Barbara: Exactly.

Chuck: … in the garage, right?

Barbara: A toolbox.

Chuck: And when I open that up, what tools am I looking for in there to help us with all that we’ve been talking about? Because goodness knows, some of us need some help there.

Barbara: Well, I mean, caregiving is the example of, it takes a village. It really does. The topics we talk about, we start with taking care of yourself, identifying stress. What are your symptoms of stress? Communication, if you don’t feel like you can or don’t know how to assertively express what help you need, it may not come to you and it feeds on that isolation and the development of further symptoms. We talk about communicating in challenging situations and learning from our emotions, making it legitimate to have difficult feelings about caregiving and how that affects you and your loved one. And then the tools, there are so many. Just being in the group is a powerful tool. You’re not isolated. Ah, there’s other people who are going through the same thing as me.

Chuck: Because you know, some people won’t reach out for help. They won’t go to a counselor … maybe it’s pride, or who knows what, time. But a group is helpful, because there are some other people going through similar.

Barbara: Right. There are six sessions. It’s 90 minutes.

Chuck: These are held where?

Barbara: They’re everywhere in the state.

Chuck: Okay.

Barbara: I’m through Area Agency on Aging 1-B. I can tell you that phone number.

Chuck: Go ahead. Throw it out. We can give that as show notes, too.

Barbara: Okay, yeah. It’s 800-852-7795. The website is aaa1b.org. You can contact them and they’re a good clearinghouse for lots of resources. But within the program, some of the things that might be helpful to talk about now, we always do an action plan. What is something that you want to do? Not that you have to do, not that you’re gonna schedule the next five appointments for your care receiver. What do you want to do in this next week? And then, how are you gonna do it, very specifically. Do you want to get away for a half hour? Then how are you gonna do that? Who you gonna call? Who you gonna pay? What’s it gonna cost? What’s it gonna take? How you gonna do it? What might get in the way? How you gonna get past that? How confident are you that you can make this happen? These little steps towards self care can be revitalizing.

Chuck: Just taking action on those steps is self care.

Barbara: Yes.

Chuck: Because sometimes we get stuck.

Barbara: It’s empowering.

Chuck: You know, you raised this issue of, “Who do you call? How much are you willing to pay?” Even when those answers come back, in the case of our recent experience with caring for Mom and Dad, we’ve got three different siblings. One doesn’t live in this part of the state, so we’re using the visiting model of two or three days a week to supplement around family. Then you discover that there’s either, or could be, a reliability issue. Sometimes they’re not making the same amount of money you’re paying the company, which means that they could go get a better job somewhere else. Mom and Dad get used to a particular face that’s not me or my brother or sister, and then that person, their car breaks down or they get a better job or a different offer and they move on.

Chuck: So the realistic nature of what’s happening with caregiving in America that supplements for families gets complicated because I never knew they couldn’t administer a pill to my mom and dad if I’m not there. You know what I mean? It’s the realistic things where a family member has to give it. “Oh man. Oh, we have to have a nurse.”

Barbara: There’s a lot to learn. There’s a lot to learn. That can be overloading, and it’s a shifting condition, the situation is changing.

Dr. Hobbs: But I think one thing that … One source, one resource that’s kind of well, obvious to me, is your physician. The physician that made the diagnosis of the loved one. Because if it’s a cancer patient, an oncologist, that’s what he sees all the time. He’s going to know what resources are out there. He’s gonna have nurses that can help. A lot of information is available from the healthcare provider that’s taking care of the one that’s being cared for.

Barbara: Right. Start there.

Dr. Hobbs: They can refer you to places, and they can sometimes refer you to groups where you can share your story with other people that are doing the same thing.

Chuck: You know, the other thing that I came to see, and I’m sure you both see this a lot, is that especially when you have siblings or spouses that are caregivers at the same time, we are all so wired differently that I can’t necessarily relate to how someone else is grieving, or they’re sad while I am able to maybe get out and go for that walk to find joy. So those dynamics start to creep in. We’re not all wired the same. Things hit me and they flow off my back and I don’t internalize. That may not be the same for another sibling. So now you have dynamics there that don’t create necessarily strife … or I guess they could, but certainly can create more stress.

Barbara: In one of our sessions, we talk about, “What are some of the feelings you have being a caregiver?” Or “What are some of your feelings when you’re feeling sad?” And then, “How do you,” and you go around, “How do you handle that?” If it’s a walk, if it’s meditation, whatever it is, as you said, it’s different for everyone. Then, maybe that’s a place where you can make your action plan. “Okay, I’ve identified that I have this feeling and it’s unpleasant and here’s what I’m gonna do about it. It helps me to walk. Okay.”

Barbara: I also want to say that, to the point of depression, when people are recognizing that, we tell them, “If you’ve been feeling this kind of blue, down-in-the-dumps, anhedonia, if it’s been two weeks, you go to see your medical care provider. This could be depression. Don’t wait on this. This could be serious.”

Dr. Hobbs: Absolutely.

Chuck: The action plan idea, you know so many people get in the weeds on this idea of caregiving that action, a plan … We’re being reactive. Some days it really feels like you’re putting out fires, so to me I really find such high value in this idea. How could you learn to, and love baking, unless you have a little bit of a plan? As much as it may have been something you just came up with yesterday, or jiu-jitsu? We see this in our daily lives. I’m going to start something, you have to begin to start. Then you begin it, and pretty soon you wake up and you’ve got a black belt, and then a 4th degree. I’m not making light of it. I just think, we do those things in normal life and sometimes we forget we can make a plan to find joy.

Barbara: We can make a difference. I facilitate several self-management groups. For all of them, making a plan, making a little step this week that you can do, and then you succeed at that and you build on it.

Dr. Hobbs: There’s that famous Chinese quote by Lao Tzu, “The journey of 1,000 miles begins with one step.”

Barbara: One step.

Dr. Hobbs: That’s something to think about.

Chuck: Very powerful. As you mentioned early on, Doctor, we’ve got this aging demographic, and you cited over age what … 85, or …

Dr. Hobbs: 85.

Chuck: In America right now. I don’t want everybody to raise their hand. We don’t need to, but I’m a baby boomer, born between 1940 … All three of us are-

Dr. Hobbs: Yeah.

Chuck: … right? Okay, so Barbara, will you take care of me and then I’ll take care of Dr. Hobbs? We’ll make it a promise.

Barbara: Okay.

Chuck: 74 million of us in America, this is the big bulge in the python, that’s rolling demographically-

Dr. Hobbs: Absolutely.

Chuck: … through the world. So if you just look at that demographic, and then you add a generation ahead of that, and if you go 50-plus in America, you’re talking about 110 million people, a third of the population.

Dr. Hobbs: You know, they say that Hallmark now makes a Happy 100th Birthday card.

Barbara: Really.

Dr. Hobbs: Yeah.

Barbara: Wow.

Dr. Hobbs: The oldest person I ever took care of was 110.

Chuck: What were they doing at 100 to 110? How were they doing? Because that’s hope to me.

Dr. Hobbs: They were doing really well. The interesting thing was, it was an older woman who was brought in by her daughter, and her daughter’s daughter, and her daughter’s daughter … it went on, it was like five generations, they were all alive.

Chuck: My goodness.

Dr. Hobbs: So, she was 110. They brought her in to me and they said, “Dr. Hobbs, we’d like our mom to live to be as old as possible. What should we do?” The problem is, there’s really nothing written on what you do with a 110-year-old, because nobody’s every really had a lot of 110-year-olds. So it’s like a work in progress.

Chuck: I want to encourage all of us that this isn’t just about aging, because as you pointed out, it could be a stroke, it could be something else that enters your life immediately. Just recap for us very quickly, Barbara, the notion of the action plan and the tools. Give us a few quick ideas of what we can take away from today’s podcast.

Barbara: Well, get information. Contact the Area Agency on Aging as kind of one-stop shopping. They can identify resources for you, or contact your physician. Contact a website for the disease, the-

Chuck: The various organizations.

Barbara: … various organizations. Recognize that you deserve to pay attention to your own well-being, and it will help you, and it will help you help your care receiver. Connect with people. Be okay with having the difficult feelings. They’re normal. They’re natural. Then, I think these action plans are so helpful. Recognize that you can’t change the situation, but maybe you can change your response to it, maybe you can change the way you think about it. And then, make those little steps towards self-care that you deserve.

Chuck: Dr. Hobbs, you were one of these people that people turned to as their primary source for many years, and still do. As you wrap things up for us, a few fast points for us to take away.

Dr. Hobbs: First of all, find out as much as you can about the disease in question. Learn about the drugs, the treatment, what you’re gonna do, why these things are being done, what side effects would be, and what the idea is, and what the course of this condition is, whatever it is, to find out so you can expect what’s gonna happen. And then, talk to your provider about if there’s any support groups that they know of, and they will. They should be able to help you out. This is going to a very wide area. Talk to your physician. They can refer you to different agencies, different groups. Talk to your friends. Talk to other people that are going through the same thing so that you’re not isolated.

Chuck: Dr. Raymond Hobbs, good to see you. Thanks for your time, Barbara Steer. Good to have you with us.

Barbara: Thank you.

Chuck: So much good stuff today.

Chuck: If you liked this podcast, we’ve got lots of episodes for you. This one was episode 26, but we want to thank you for listening. It’s called A Healthier Michigan Podcast, brought to you by Blue Cross Blue Shield of Michigan. And I mentioned, there are previous podcast episodes, that while they may not deal directly with the idea of caregiving, they may help you out. Maybe you are stressed. Maybe you want to figure out how to de-stress. We’ve got those for you as well, all locked and loaded.

Chuck: If you want to check out our website, it’s ahealthiermichigan.org/podcast. You can leave us a review there, or a rating on iTunes or Stitcher. You can get all the podcast episodes, new and old on your smartphone or tablet and be sure to subscribe to us on Apple podcast, Spotify, or your favorite podcast app. If you’re a caregiver, and even if you’re not, have a good rest of your day and just take care of yourself. I’m Chuck Gaidica.