“Calling All (Parkinson’s) Care Partners: Managing Disease and Burnout” – Webinar Notes

“Calling All (Parkinson’s) Care Partners: Managing Disease and Burnout” – Webinar Notes

The Michael J. Fox Foundation (MJFF) hosted a webinar in December 2020 on managing burnout in caregivers for Parkinson’s disease (PD). There were four panelists: a social worker, two caregivers, and a person with Parkinson’s. They talked about being a caregiver to people with Parkinson’s disease while managing stress. They also answered audience questions throughout the session. 

The webinar was recorded and is available on the MJFF website.

The webinar can be viewed after registering. Registration is free. 

Here are some additional resources for caregiver stress on the Stanford Parkinson’s Community Outreach website.

I listened to this discussion and am sharing my notes below. 

– August Besser

“Calling All (Parkinson’s) Care Partners: Managing Disease and Burnout” – Webinar Notes

Webinar Host: The Michael J. Fox Foundation (MJFF)

Webinar Date: December 17, 2020

Summary by August Besser, Stanford Parkinson’s Community Outreach

This session had four panelists and a moderator:

  • Christie Brooks, HR professional, person with Parkinson’s
  • Prentis Brooks, HR professional, husband and caregiver to Christy
  • Taryn Fixel, member of MJFF leadership council; caregiver to her father with Parkinson’s
  • Amy Cheshire, social worker, Parkinson’s Foundation Center for Excellence
  • Moderator: Dave Iverson, contributing editor, Michael J. Fox Foundation

Dave Iverson: I’d like to start with Prentis and Christie. How did you first find out about Christie’s diagnosis, and what did Prentis do to provide support during that time? What were your concerns?

Christie Brooks: When I was first diagnosed, Prentis was on a business trip and I was on my own. I went to the neurologist and was diagnosed. When he came home, I said, “Hey, I got the results from the neurologist and I was diagnosed. I might need you to be my caregiver”. And he said “okay”! I said, “no I don’t want you to be my caregiver. I don’t want you to give your life up like that”. I had always taken care of my family, and I didn’t think I wanted him to take care of me.

Dave: Prentis, how did you negotiate Christie’s independence with your care?

Prentis Brooks: Christie has always been independent, and I’ve always admired that about her. Christie actually helped take care of my stepdad as a dementia patient, and I got to see the challenges and frustrations that they overcame during the circumstances. Coming back from my business trip, and knowing that she had come back from the neurologist, you know something is going on. It’s just a matter of taking that evolution and saying, “okay there are times where I need to step in and times where I don’t need to step in”. When it comes to her Parkinson’s, we negotiated some things for her surgeries as she recovered. You learn how to work through that, but circumstances happen, and you have to figure out if you need to lean in more or allow for independence.

Dave: Would you say the key quality you need is attention?

Prentis: Yes. Be observant, pay attention. There was an event we wanted to attend this past weekend, and I was just asking questions, like “do you want to go on? Do you want to keep doing this”?

Dave: Thank you. I want to bring Taryn in on this point, since she was a child caring for her father with Parkinson’s and had a similar kind of relationship. How has this evolved for you over your dad’s journey with PD?

Taryn Fixel: as you know, one day is different from the next. Some days are better than others. He might want help on Monday and not want help on Tuesday, and so really making sure to be articulate and asking questions like how would you like me to help you when I think you might need help?

Dave: Amy, let me ask your perspective on the challenges of caregiving when someone needs help on one day and not the next. Can you tell us what you see in your social work experience?

Amy Cheshire: I often say, just because you have Parkinson’s, doesn’t mean you are not immune from things that affect people who don’t have Parkinson’s. We all have good days and bad days. For whatever reason, you might just be having a really bad day, whether you didn’t sleep too well last night or didn’t sleep or eat well. It’s important to recognize that people will have off days, and to not overly read a lot into that if you can. Which is easy to say, but hard to keep in perspective. Just being aware of that and always trying to fall on the side of self-compassion can make daily life a little smoother.

Dave: I wanted to share this quote from Michael J. Fox on his relationship with his wife and caregiver. He said: “It’s so much more complicated than ‘It’s a great marriage.’ It’s a great understanding. It depends on mutual goodwill and mutual love and mutual concern.” 

Prentis and Christie, what surprised you about the changes from Parkinson’s disease? Christie, would you be open to sharing your story about wanting to look good?

Christie: Unrelated to Parkinson’s, I had four surgeries on my shoulder. I had to be totally immobile during that time. It was really hard to do things during that period. And one thing that was hardest for me was taking care of my hair. And Prentis learned how to take care of my hair in the way that I wanted. That was really important to me. I didn’t want to be frumpy, I wanted to look put together. I felt like if I felt better, if I looked better, I would start to feel better.

Prentis: I will say, that was a big challenge for me. I’m the youngest of three children, and we have a daughter. Christie usually handled her hair, and our daughter’s hair, I never had to do that. Coming back from my business trip and coming back to work through this, I had a lot to learn, and Christie help me through that. I would get frustrated, but now I have a little better understanding. Thankfully now, Christie’s cousin is a hairdresser and is willing to come over and take care of Christie’s hair at any time.

Christie: Before the COVID pandemic, I would go get a massage and a facial. I would always tell my friends: the massage is for Parkinson’s and the facial is for myself. It made me feel better about myself.

Dave: Amy, is there a lesson in there about “being open to expressing our needs”?

Amy: One of the hardest things for many care partners, myself included, is asking for help. Because it causes us to feel vulnerable, dependent, and is really a fine art if you can work on it. If you can practice it, it really can help. Especially through this pretty long journey relating to caregiving. You’re not always going to get the answer you want, and be prepared for that, but it’s amazing how many people can often be surprised when they reach out and ask for help. Whether it’s with a spouse, or neighbor, or mailman, whoever it is, people more often than not want to help. I also tell people, the more specific you can be with your request, the better they tend to land as well.

Dave: That’s a good point about being specific. Taryn, I’m interested in your perspective on this too. What did your mom need as a care partner?

Taryn: I think the best thing we could have done for my mom was to let her take breaks. One of my siblings would go and stay with my dad, and my mom would come and visit me, or vice versa. Those breaks have been really important for her, and a really nice bonding experience for us with my dad.

Dave: And I understand you’ve been helping take care of your dad from some distance now. You’re in California, your parents are on the East Coast, and I don’t know where your siblings are. It must take a lot of coordination.

Taryn: Sometimes it’s better than others, sometimes it’s not. We have really learned how to communicate together, and we’re really lucky. We have a really cohesive family; everyone is involved. And that’s really important, that the caregiving is shared amongst the children. Different people have different specialties. Let them lean into the thing that they are good at doing.

Dave: Has there been an issue of feeling like you are doing more than your siblings, or that your siblings feel like they are doing more than you?

Taryn: We are all very involved. I don’t think that’s been as much of a challenge for our family. We’ve definitely had moments where somebody has needed to say, “I need to pause”. We’ve been working with Parkinson’s for over 20 years, so that process of how we have that way of communicating has changed. I needed to get a lot more specific. You don’t want to say, “I need to pause” five minutes after you need to pause. You need to say it five minutes before you need to pause. For me, I found that if I wait too long, I’ve already crossed a certain mental threshold. And that’s not useful for my dad.

Dave: Here’s a question from the audience: “My husband is very private and a very individual person. He rejects most help. What can we do?”

Amy: That’s a good question, and there’s usually a good reason behind that. When someone uses the word private, they may mean more introverted. And sometimes, folks that are wired that way, get more stressed by having new people in the situation and having strangers involved in their lives. A different way to go about it is to share of how it is about you, and how it’s your problem too, instead of the person with Parkinson’s problem. You can say, “I know I’m starting to get kind of stressed, I need to take care of myself, this is what my doctor is telling me”. Start off very tiny and small. And then build to success. If you can make it more about you, and not so much about the other person, that is the best way to approach this.

Dave: I want to get Prentis’ perspective on this as a spouse and caregiver. How have you handled getting Christie help when she maybe doesn’t want it?

Prentis: Thankfully, I have not had to face that yet. Where Christie is at in her journey with Parkinson’s, she is very capable of doing many things by herself. She’s still working right now. I go back to the example of my mom, there were times where I felt like she needed to take a break and she didn’t. It was very grueling on her, and from that model I think the best thing for me to do is to keep our children engaged and what’s happening. Sometimes too much! Now, we have two helicopter children who sometimes overreact. But for me, it really goes back to myself. I had a situation a few years ago where I had two surgeries within a few months of each other. I was on my back for a week and Christie needed to take care of me. I had to ask her to do a lot of things that I had not asked anyone else to do. From that example, it reminds you that, okay, “I can put myself in her situation and I can help her”. It’s important for me to check in with her and see how she’s feeling, what she’s experiencing.

Dave: Here’s another audience question: “How can I remind my loved one to use his walker? He stands up great, and I don’t want to sound like a nag.”

Amy: I can’t tell you how many times this dialogue goes on in my office here! There’s never a perfect or great response. I think sometimes if you can shift gears as a care partner and put yourself in the other person’s shoes. Would you want someone to be telling you those things if it was you? All of this tends to come from a very well-hearted kind of place, and I think that’s also where caregivers get caught, because people will call that “nagging” or “friendly reminders”. I think it’s a way to try to feel like you’re getting some control over the situation. Parkinson’s is tough because there are so many things that you don’t feel like you have as much control over. I try to remind the person with Parkinson’s that most of this is coming from a well-hearted place. It’s often hard for caregivers to stop doing this once they get started, I’ve noticed. And then people kind of start to tune it out, honestly. There’s not an easy solution.

Dave: Taryn, let’s get your thoughts on this. Did you notice that with your parents?

Taryn: I do feel like a nag, in a kind of way. I say, “I don’t feel like I’m able to help you in this way. If you do this way and you fall, I’m not in a position to support you. How can we do it differently so that I can actually help you?” 

Dave: Thank you. Moving on, let’s look at the reality of the COVID-19 pandemic right now. Here’s another audience question: “How do you cope with the pandemic and being able/not able to bring in a caregiver during this time?”

Amy: The idea of social connection and social engagement is so huge for all of us. We’ve all been called to task during the pandemic, about how do you keep any of that going? And then you add Parkinson’s into the picture, you’re just adding another layer. We’re just concerned about caregivers feeling isolated. We know this goes on when we stop hearing from people. Once caregivers start to feel like they are pulling back and getting isolated, they’re often maybe starting to feel more hopeless about the situation. I think the pandemic has often just added to that. I know we really tried to think of creative ways to encourage people to keep engaged and to keep asking for help. I think the biggest way is to find ways to keep asking for help. It’s probably not going to be as much in-person. It’s super important to manage your expectations, and not put so much pressure on yourself. Keep reaching out in whatever way you can, whether that’s through the phone, or through zoom, or writing letters. Don’t lose that engagement.

Dave: Christie and Prentis, what would you add to that? What suggestions do you have for maintaining connections during this pandemic?

Christie: Our group of Parkinson’s people meet together to go on a hike. It’s socially-distanced, and we’re outside. Everyone has to find their connections differently, and to be comfortable with that. Zoom is going to be a big source of connection, not in-person. How do we make that as real and as intimate with the person we are Zooming with as possible?

Prentis:  I would like to add that I have a group of friends that have Zoom meetings since before COVID because we all live in different places. We make sure to meet every month or every other month, to keep that social connection. Most importantly, take care of yourself. I make sure I exercise, and I try to get enough sleep when possible. Make sure to eat healthy foods. Take care of yourself during this COVID pandemic.

Dave: Being a care partner, you often hear the saying, “You can’t take care of others until you take care of yourself”. Which is true to some degree, but doesn’t happen all the time. A question on here says: “How do I meet my needs when I haven’t met my husband’s needs”?

Amy: Honestly, the best way is learning to sit with those feelings. And a lot of people don’t like to hear that. We live in a world where people like to distract and push away hard feelings. I remember having a pretty intimate experience with my father who had Parkinson’s, because I was taking over for my mom as a caregiver. And I remember a cherished friend called me, saying “Hey, we are all in LA and we’d love for you to come out with us”. I looked at my dad, and I just knew there was no way I could leave him that night, even for a few hours. I had to turn down the invitation, and hang up the phone. I just started crying, because I just had to sit with the fact that things are different now. Sometimes your perception of how you view a situation can really go a long way and how you deal with it.

Taryn: Having that understanding of what your minimum required necessities are is really important. If for you, that’s connecting with a grandchild once a week, or going outside once a day, really make sure that you’re hitting that minimum is important. And it shouldn’t always be at the minimum, you want it to be above the minimum. Making sure that it’s okay to be flexible within that, so if your ideas to go out first thing in the morning to go for a job, and someone else needs help in the morning, that’s okay. You can go out for a jog later. The other thing that I do that I found very useful over the years is to write a gratitude list every day. To make a list of 10 things that I am grateful for. It doesn’t just change my perspective and make me feel positive, it also reminds me of what my priorities are.

Dave: Here’s another audience question: “How do you avoid burnout?”

Amy: I think whatever tools you have in the tool kit are helpful. Another one that we prescribe around here to the caregivers, is you need time off from Parkinson’s. Sometimes we literally write prescriptions to caregivers to whatever activity they use to enjoy that they have stopped doing. For example, whether it’s golfing or hiking. In a way, we mandate or strongly recommend that they get back to that thing. It’s like with parents. When mom is unhappy, it has a huge trickle-down effect often on kids. As a caregiver, if you are finding yourself getting more short-tempered with someone, these are all red flags that you’re headed into this burn out period. Whatever your activity might be, do you have one or five minutes during the day to help you calm down? You can even do that every hour if needed, just take a deep breath and try to focus. We really try to get caregivers to recognize when they’re headed to that burn out. The sooner we can help you figure out your burn out, we can help you figure out ways to avoid it.

Dave: Christie and Prentis, what are some things or ways that have been restorative to your mental states during this time?

Christie: I like what others have said about being in the moment. Live in that moment, and then get back to the routine. But what I want to say from a patient perspective, is that sometimes we have to realize that they need a break and need time away. The whole thing becomes very focused on us, and it’s hard to let them go do what they need to do. Or to let someone else come in to take care of us, to take that place. Or caregivers need those moments, and we have to give them those moments.

Prentis: I would just add to that to make sure to check in during the day. We talk about what we have going on at this time, and what we have going on in that time. That helps me think, “okay, how can I fit in exercise that’s important to me”? Sometimes I do it in the morning, sometimes I do it in the evening, but I’ll make sure to get it in. If I don’t, I know that next day I’ll have the opportunity.

Dave: Thank you. Here’s another audience question: “How do you handle a situation where the person with Parkinson’s relies on their caregiver too much? When they want to be dependent on the caregiver?”

Amy: That’s a hard question. The first thing I would say is, you’re not alone. A lot of times, what was behind that in my experience, is fear. The person with Parkinson’s often has a number of fears going on, whether they’re able to share these or not. Some common ones that tend to drive that experience are: “is my caregiver always able to be here? Are they always able to hang in there? How bad is this going to get?” These are often questions that caregivers are wrestling with at the same time. The big question is: “am I going to be abandoned? Is this going to be so hard that everyone is going to check out on me?” Sometimes, instead of getting into the minutia of these things, is if you can tap into more of the underlying feeling that’s going on, you can often get behind some of what’s going on there.

Taryn: Humor goes a long way. I often ask myself two questions: how can I make this light? And how can I help my dad maintain his sense of dignity right now? When I frame it that way, I get out of myself. I’m not as focused on my own stress, and I’m just focused on his concept of dignity. That flips a switch for me. When my dad has had really hard times, I’ve made it a point to watch something funny for five minutes at the end of every day. That works for me. Some people might have different practices, but it really, really helps.

Dave: Here’s an incoming question I wanted to quickly share: “How do we find a social worker like you, Amy?”

Amy: A couple of quick suggestions: the more you can expand your team, the better. Look for the Parkinson’s Foundation Centers of Excellence, which are all around the country and internationally located. Be sure to also keep an eye on the caregiver’s mental health. Up to 50% of caregivers will experience depression of some point. It will start eating into your energy. You can use websites such as Psychology Today and BetterHelp for online therapy sessions to work on your mental health.

Dave: Taryn, how do you help your dad maintain his dignity?

Taryn: I don’t do things for him that he can do himself. When we were in hospitals, I made sure to listen to what he wants, and that all questions are addressed to him. Oftentimes in the hospital, the doctor will address the questions to the caregiver. I’ll turn to my dad, and repeat the question, and ask him what he thinks. If there are times where he can’t fully articulate it as much as he wants, I’ll say “what I think is this”, and ask “is that right”? There are a lot of different strategies, and I just want to make sure he feels there, that he’s involved.

Dave: Here’s another question from the audience: “What do you do when you’re not feeling appreciated? How do you handle that?”

Prentis: I would say that, make sure that you’re living your purpose even if you’re not giving that feedback directly from your partner. I’m currently not having that experience because of our situation. I saw that happen with my mom, unfortunately. It’s something that really speaks to me, is to make sure you’re really living who you are, even if you’re not getting feedback from that person you’re caring for.

Dave: Here’s a final question from the audience: “How do you go about talking with someone with Parkinson’s when it’s time for them to stop driving?”

Amy: Driving represents something different to a lot of people. Or a lot of people, it may have been something that’s a part of their job. Some folks have a much harder time with changing their driving than other people. Some families will not have a big issue with this, and others it will be the hardest thing they will have to deal with in terms of Parkinson’s. If you were in that latter group, I have a couple ideas. If you’re blessed to have a driving evaluation program in your community, and many people are, this gets you out of the hot seat. Quite honestly, none of us are good driving evaluators. As doctors and providers, we are not good driving evaluators. If you can turn it over to a third-party to do a driving evaluation, that’s wonderful. To people with Parkinson’s, I would encourage you: this is a great opportunity to shine and demonstrate if you are a good driver. If you don’t have this type of program available, fall back on your doctor. Many of them are willing to fall on that sword for you. And then it becomes a part of their medical record, because their doctor has advised them to not drive.