Advice for Parkinson’s Care Partners

EP 104 - podcast image

Kelsey Phinney talks to Her Mom, Connie Carpenter Phinney, about Being a Parkinson’s Care Partner for Over 18 Years

Every obstacle presents an opportunity.
– Connie Carpenter Phinney

Parkinson’s impacts the whole family, especially those most involved in the day-to-day care of the person living with Parkinson’s. As a care partner, it can be easy to lose sight of your own health and well-being as you care for your loved one. However, taking the time to prioritize your own physical and emotional health will not only ensure that you have the stamina and bandwidth to care for your loved one, but the joy you get from taking care of yourself and minding your own needs will make a big difference in their life as well.

In this episode with Conne Carpenter Phinney, you will learn: 

  • About her journey as a care partner to her husband, Davis Phinney
  • Practical strategies she uses on a daily basis to stay healthy, connected and present
  • The key rule that guides all of the choices they make
  • How to take care of your marriage, no matter what
  • How to face obstacles with determination, compassion and humor

Notes

  • It can take a year or longer to adjust to a Parkinson’s diagnosis and live with it
  • It’s important to teach your person with Parkinson’s to accept help from other people
  • Commit to continued dialogue about your experience and frustrations
  • Acknowledge that you hate Parkinson’s, too
  • Be sure not to confuse hating Parkinson’s with how you feel about the person with Parkinson’s
  • Create a safe environment in which to live – move or remodel if you can
  • If your person with Parkinson’s has REM Sleep Behavior Disorder, consider getting separate beds
  • Accept the roller coaster that is Parkinson’s and that there will be good days and bad days
  • When you have bad days, ask yourselves, “How did we get here?” (consider sleep, medication, food, exercise)
  • Always go to doctor’s appointments with your person with Parkinson’s. Record the conversation and be sure to go over what the doctor said when you get home
  • Take care of your marriage and keep honesty, humor and playfulness a priority
  • Avoid the temptation to feel sorry for yourselves
  • Every obstacle presents an opportunity

Concepts Mentioned in this Podcast & Further Reading

Advice for Parkinson’s Care Partners with Connie Carpenter Phinney

Connie Carpenter Phinney: I’m Connie Carpenter Phinney, married to Davis Phinney who has Parkinson’s and the mother of two brilliant children.

 

Kelsey Phinney: That’s my mom, and we were lucky enough to have the time when I was home last to sit down and talk about her journey as a care partner and what advice she has for other care partners out there. This is the Parkinson’s Podcast brought to you by the Davis Phinney Foundation. I’m your host, Kelsey Phinney, and this is episode four, Advice for Care Partners. As always, if you’re enjoying these podcasts, please subscribe and leave a review.

 

Kelsey Phinney: To start out. I was curious what my dad’s diagnosis story was actually like because I was so young at the time. I wasn’t really in the thick of it like my mom was.

 

Connie Carpenter Phinney: Diagnosis with Parkinson’s is difficult. There’s not a test you can take. So Davis started having tremors, which of course is the most overt sign of Parkinson’s. Not always. Not everyone with Parkinson’s has a tremor, but he had a tremor. He had a real problem modulating his voice and he was working in television at the time. And so voice modulation tremor, extreme fatigue. Were the red lights that started to bring us into a series of doctor visits and it took probably a month or two of intensive visits before we really realized to nail down Parkinson’s disease and you know, it’s funny because at the time we thought we were maybe a little bit relieved because of course anytime you’re looking for problems that are originating from the brain, there are some very dire ones that can lead to death and there are ones like Parkinson’s you know, you’re really going to live with for a long time. So we didn’t really know what to think when he was diagnosed. Michael J. Fox made it public that he had Parkinson’s right around the time that Davis was diagnosed, which led us to understand that people that were 40 years old could be diagnosed with Parkinson’s. And before that we just did not know that. Yeah, he was 40 years old, it’s been 18 years now since he was diagnosed.

 

Kelsey Phinney: Beyond diagnosis. I was curious to know, because I can’t remember how she told my brother Taylor and I, that my dad was diagnosed with Parkinson’s and how their life changed after diagnosis. And how they dealt with that in the beginning together.

 

Connie Carpenter Phinney: You know, you were six I think, Taylor was 10 on Davis was diagnosed in 2000. I told you guys in a way that was consistent with your age, maybe a little more information for Taylor, maybe a little less for you, but I mean the overriding message to you was that Dad’s got a disease, it’s causing him to slow down or maybe stop working for awhile and he’s going to be home more. And you know, your dad had a rough summer fellow in the diagnosis. He was super tired and some of it was the medication, some of it was the adjustment to the diagnosis and had to let go of the work that he had worked hard to get, like, you know, covering the Tour de France for example. And um, so it was a rough summer for him and for the family. And I think that more than anything, um, it was what really started to bring us closer and closer together because we realized that time is precious and his health was really precious.

 

Connie Carpenter Phinney: And it was just sort of a transition, you kind of move through it and you tell your friends and some of them say, “are you sure?” And that doesn’t really help because you are sure and what you know, because they’ll say, why do you look so good? Yeah, you just look good. That’s great. And that’s really different than a diagnosis of cancer for example, because as you know, your Uncle Chuck was diagnosed with lymphoma right around the same time and that was a battle, people lined up to prepare meals and provide support for their children and, and everything. But when you’re diagnosed with a disease like Parkinson’s, you don’t know what to do and especially when the person is 40 years old and seemingly at really the peak of their life, uh, and, and at the peak of his powers really in a lot of ways, you know, business wise and even athletically, he was still very strong.

 

Connie Carpenter Phinney: And um, so it was a really difficult time for us and one of our friends told us that it would be, in fact, it was his team Dr. at the Money Race, Max Justa told me or told dad that he would probably take a year to adjust to that diagnosis and I think that was really smart and when I meet people that are newly diagnosed, I always let them know that, that it takes a year to adjust to the diagnosis to understand what it means to come to grips with that and then to begin to live with it because you’re going to live a really long time with it when you’re young and you’re diagnosed. So it’s, you know, it’s rough. It’s rough for, for, for anyone with the diagnosis phase, especially I think when you’re younger.

 

Kelsey Phinney: I just want to reiterate the sentiment that it takes about a year to adjust to the diagnosis and start living your life with this change. So when things are hard or aren’t going well health wise with my dad, I know that he has my mom to worry about him and take care of him. So I often am more worried about my mom’s wellbeing. So I asked her what tactics she employs by herself, with my dad and with her friends, that help her take care of herself because she’s been living with Parkinson’s for the last 18 years too, even though she personally doesn’t have to struggle with the symptoms of the disease.

 

Connie Carpenter Phinney: You know, that’s such a good question, is how you take care of yourself as a care partner on how you value yourself and the journey because you’re not the one with the disease. And when I speak to groups of caregivers for Parkinson’s, I do acknowledge the fact that we are fortunate. We don’t have Parkinson’s, we may have other things. We all have our health challenges and other challenges in their life. And they don’t go away because you’re a person. It’s not always your spouse. You know, for many people it’s their parents or some people it’s their children. For some people it’s their siblings that have Parkinson’s. And um, and so I think it’s, I think the most important thing as a caregiver is to teach your person with Parkinson’s is to accept help from other people. Whether that means that they’re going to accept a ride somewhere, on a regular basis, to maybe a class. Your dad carpools to get to his singing class.

 

Connie Carpenter Phinney: That’s a real benefit for me and that’s a benefit for him because it’s just another way to have camaraderie with people with Parkinson’s and to look after yourself and not be asking for that ride from me. As an example too, even today, you know, there’s certain rules that we try to live by to make it safe in our household, right? For living with Parkinson’s because people with Parkinson’s trip more. They have balance issues, they sometime don’t make the best decisions because cognitive and executive function can be altered and so even today I had a conversation with them about, you know, sometimes you’re putting me in a position of having to come down on you because you’ve done something that wasn’t smart and I know you know that. But when you put me in that position as your wife and someone who loves you and cares for you, it makes me really uncomfortable because it makes me look like a bad guy and I don’t want to be the bad guy.

 

Connie Carpenter Phinney: I want you to be safe and I want you to be smart and your choices and when you’re not, it’s really hard on me and if you ever aren’t sure about a choice, just ask me. And so I think that the number one thing, aside from teaching your person with Parkinson’s, how to ask for help and accept help is also for you to continue a dialogue that’s very rich and, and that stays open and that acknowledges that sometime you’re going to be frustrated and truly more than anything else acknowledged the fact that you don’t like Parkinson’s. And when I speak with groups, a lot of times I get them to acknowledge the fact that, you know, we hate Parkinson’s. We say it together, you know, I hate Parkinson’s. Well, that’s kind of liberating because to dislike the disease is one thing but don’t, don’t dislike your person with Parkinson’s.

 

Connie Carpenter Phinney: When those attributes of Parkinson’s, when the symptoms of Parkinson’s bother you, remember that that’s not within your person with Parkinson’s control and, and that’s the disease. It’s not your person with Parkinson’s. On that note as well, I think that a lot of people that are living with someone with Parkinson’s, incredibly it’s a bigger problem when it’s your parent with Parkinson’s because maybe you don’t see them daily or you don’t understand the complications of the medicines, but so much of the behavior, if it’s not Parkinson’s, it can also be the medicine. You know, there’s a lot of aberrant behavior that comes out of the medicines and that’s why you know, another real key tactic in caregiving is to be able to have a dialogue with your medical team and to make sure that you’re. you’re seeing a movement disorder specialist or a neurologist who has a real open door policy to you calling and asking questions and if that means you need to sign off on certain documents with a doctor, a HIPPA release, for example. That’s so important to being able to understand the disease better and to help your person with Parkinson’s and in turn help yourself.

 

Kelsey Phinney: To summarize what you just said, we can all get some relief in being able to dissociate Parkinson’s symptoms and medication side effects from our person with Parkinson’s who we love. It’s also essential to keep an open and rich dialogue about safety for both of you. I asked my mom to share with you guys the ways in which her and my dad have changed things with their house, within their household and lifestyle shifts that have made it safer for my dad living with Parkinson’s and just safer in general.

 

Connie Carpenter Phinney: And I think that in terms of trying to maximize the safety of the person with Parkinson’s, you have to really take a look at your house, your house, where you live, maybe you even need to move. Two years ago we moved into a single level condo that was less than half the size of our house and we have been so happy there because A, it’s just so easy to manage and B it’s very uncluttered and super safe for dad. We also were able to renovate the bathroom so we have grab bars. We don’t have a lip when you’re walking into the shower. All the little things that can really cause some pretty bad accidents for a person with Parkinson’s that has unsteady sheet, we also have separate beds in the same bedroom, but we have separate beds because he also as many people with Parkinson’s suffer with REM sleep behavior disorder.

 

Connie Carpenter Phinney: And so he would act out his dreams, which wasn’t safe for me because I would get hit, you know, in the night because he was acting out his dream, not that because he doesn’t like me, it’s just making those choices, which are, it took forever for us to decide to have separate beds because there was a point of that, that felt like a failure for us. And a lot of couples live in separate bedrooms even, you know, because one might snore when, you know, has totally different hours, whatever. But we’d always shared the same bed. So it was a big decision for us and really the really the right one. And he sleeps a lot better having his own space and not having to worry about me. And um, I certainly sleep a lot better. So again, it’s just making a few choices. It wasn’t easy to downsize, that was a big choice, but I always wanted to downsize before we needed it. I was wanting to be on one level before we needed it and then the last two years we’ve really needed it, so it’s just made a big difference in our lifestyle and our life. You know, we’re super happy with that.

 

Kelsey Phinney: If you’re interested in learning more about home safety, please visit the Davis Phinney Foundation’s home safety checklist, which you can find on their website at www.davisphinney.com/landing-home-safety, or you can look up home safety in the search bar. Next, I asked my mom if she could explain how she lets my dad have his good days while also being there for the bad days and how she explains that to other people because we tend to like to put people in boxes and with Parkinson’s there can be a lot of ups and downs. So I just wondered if she had some tips for navigating that.

 

Connie Carpenter Phinney: Another real cue to living with a chronic illness like Parkinson’s is to understand that there’s going to be bad days and good days. It’s a bit of a rollercoaster. There’s even good parts of the day and bad parts of the day and you have to acknowledge that that it’s just, there’s no stasis is, it’s never just an even playing field as far as Parkinson’s goes. And so I think sometime it’s hard for people because they might see your father looking fantastic one day and then the next day he’s stumbling and tripping and it looks almost like he’s a drunk. Which you know, is another thing that a lot of people with Parkinson’s get accused of just because they’re a bit unstable on their feet. That’s the nature of Parkinson’s. There’s a lot of up and down and we’ve just gone through a really rough summer where Davis was really disabled and I think that, you know, in a lot of ways it was really hard for people that did see him because you know, they’ve seen him being so active and then all of a sudden he’s really quite unable to do all the things that he was able to do before.

 

Connie Carpenter Phinney: But lucky for us it was transient and I think you, you work for the good days and acknowledge the good days and you accept the bad days, but even in that acceptance of bad days, you want to ask yourself, well, how did we get here? Did we get to this bad day because you’re overtired, you’re under medicated? You know there’s too much stress? You didn’t eat properly? What, you didn’t exercise? And ask yourself those questions because quality of life, that’s everything with living with the disease. And if you can help your personal with Parkinson’s to have a better quality of life, then your quality of life as a caregiver will be better too.

 

Kelsey Phinney: You work for the good days and bad days, but like in life and certainly in my life as a professional athlete, if you can learn something from the bad days, then it often can increase your chances of having more good days. So from that I wanted to know if my mom keeps notes to keep track of my dad’s symptoms and how she advocates for him at doctor’s visits and in turn how they ensure that doctors’ visits, particularly with their movement disorder specialist, which maybe only happen once or twice a year are as productive and informative as possible.

 

Connie Carpenter Phinney: I think it’s super important that the person with Parkinson’s does not go to any medical appointment unsupervised because it’s a known fact, and in fact I’ve to movement disorder docs about this, that when a person with Parkinson’s comes into the room and sees the doctor who they haven’t seen for a while, they’ll perk up and they’ll behave in a way that isn’t consistent with the way they are at home. They’ll actually behave better. Doctors know that, but it’s important for you to go in with them because it’s easy for the doctor to, or for your person with Parkinson’s to under value some of their symptoms. So yes, you need to keep track of what you’re going in there to discuss and I always recommend to people that they not take notes when they’re meeting with their doctor because their meetings with their doctor are too brief.

 

Connie Carpenter Phinney: And as we get older we don’t remember things as well. And so if you can go in there and just record it, record the conversation on your phone. Then later when you go home and you’re disagreeing over anything that the doctor might have said, you’ve got proof. It’s not just in your notes. And so I think that’s a really important thing because it allows you both to be fully present in the conversation. It allows the doctor to understand who the person with Parkinson’s support team is and if you can’t go send a close friend of that person with Parkinson’s or another relative, um, because otherwise it’s not going to be a worthwhile visit. They’re not going to get what they need out of that. And a lot of times the person with Parkinson’s is stubborn and being stubborn helps you live with a disease like this, you know, but it doesn’t help you when you’re in the doctor’s office and you need to admit that your digestion isn’t working, you’re not sleeping, you’re tripping. You know, I’ve been in the office when they’ve said to your dad, you know, have you fallen lately? Oh No. I’m like, well, what about two days ago? And so, oh yeah, that It’s really important on that note that, uh, you accompany a person and that you, you become active in their management of the disease, because management of Parkinson’s is everything. You know, it’s, it’s a management situation. It’s exercise, good nutrition, a positive outlook, good rest, all of that are so important to living well with the disease. That’s the goal and living well. I mean, for both of you. And I think for the, for the caregiver caregiver burnout is really problematic because it is a long-term disease. And what happens if you get sick? And, um, as you know, I’ve had my health challenges and at one time telling your dad that, uh, you know, I was going to tell three people, bring three people in to help.

 

Connie Carpenter Phinney: We have my close friends who I affectionately refer to as my sister wives and give him a chance to, to do some caregiving as well. And if it wasn’t going well, I would be inviting more into the house so, you know, it gave him a chance to not only work with them and uh, and with me and, you know, make you know, make the situation as positive as possible because there again, you know, it’s not just a one way street. It’s got to be both ways. And I’m fortunate because I care a lot about your dad and he cares a lot about me and that just can’t get lost in the equation either.

 

Kelsey Phinney: A couple takeaways are to always either go with your person with Parkinson’s to doctor’s visits or send a close friend or relative. And instead of taking notes, record the visit in order to pay attention in the moment and have all the information later. And then beyond that, it’s important to be able to ask your person with Parkinson’s for help in return if you’re having a hard day or going through some health issues and always finding the best balance to live well together, which I think my parents have done an amazing job at. So next I’ve noticed that ever since I stopped living at home, my mom asks me every time I come back to visit what I think of my dad and what I think of his symptoms and I wondered why she does that.

 

Connie Carpenter Phinney: Yeah. I think when you see the person with Parkinson’s every day, you get a certain view of how they’re doing. There’s times when I lose my objectivity completely as to how well Davis is doing. So when you come home or when your brother comes home and you haven’t seen him for a while. I do. I always ask how do you find your dad, what do you think? And I also think it’s hard because when you go away, the image that you have in your mind might be a little more of a positive image. Then sometimes when you come back, and especially if you catch him when he’s tired or something, but I think it’s important too, for me to know what, what do you think? And I’ll ask that of his friends that we see only periodically or something, or they might say something to me like, wow, he looks a lot better. That’s what you want to hear. But sometimes we undervalue sometimes just asking other people their opinion,

 

Kelsey Phinney: Something to consider if you are the care partner day in and day out is asking other close family members or friends what they think of your person. This can help with seeing the progression of the disease or on a positive side, seeing how much a medicine or therapy helps improve the symptoms. I’ve always looked up to my parents for many reasons, but one big one is the strength of their relationship. So for my final question, I asked my mom how her and my dad take care of their marriage outside of the dynamic of care partner in person with Parkinson’s to live the best life that they can.

 

Connie Carpenter Phinney: Davis and I have been married 35 years. That’s an amazingly long period of time, so I think in any long lasting marriage you’ve come to some agreements in terms of how you’re going to deal with each other and what your dialogue is with each other. And Davis and I have always conversed a lot. It’s one of those bad things about Parkinson’s when his voice is not very easy to understand is that our conversations are briefer, but I will say that the number one thing we’ve done is keep our dialog going, keep the honesty, playfulness, the humor in our relationship. All the things that kind of brought us together to begin with I think are still there and a lot of ways. We’re very respectful of each too. That’s just what it takes to stay married for a long period of time. And it also helps in dealing with, with Parkinson’s. And um, I don’t think either of us spend any time feeling sorry for ourselves because that’s not a productive emotion.

 

Connie Carpenter Phinney: I think a lot of people get in that trap or in that situation and sometime it’s super understandable, but I always say too, like there’s, there’s always time for a do over, you know where you go back, and I always encourage people to rewrite the rule books of their, of their relationship with that person. With Parkinson’s, it’s hard if it’s your parent and all of a sudden you have to show your parents what to do. It’s hard if it’s your spouse and your spouse has always been the one that really ran the household or you know, or earn the income and now has to retire. I mean things change, but things change in the course of any normal marriage and it’s the way that you confronted, discuss it and move through it. That allows you to find the happiness that you’re really seeking and you know, the overall and overarching thing I tell anybody, whether they’re living with Parkinson’s or not, is that we’re a culture that undervalues contentment and happiness and I don’t mean happiness in terms of just in the absence of thinking about other people. It’s actually the inclusion of thinking of other people. You know, how, how do you cultivate happiness within your family, within your circle of friends and within your village? That’s what’s important. More than ever now in our culture it sounds kind of lofty, but it’s as you know me, that’s the way we live as we seek to be content with what we confront and with the opportunities that we have and there’s that whole thing about looking at obstacles as opportunities. I think that’s a big part of how we live and maybe what made us good athletes back in the day is that you know, every obstacle presents in itself an opportunity not to look at it as just a wall in front of you that is maybe a wall with a door that you get to go through and see what’s next. So hang on. That’s, that’s the message I try to give to people and it’s not realistic for everybody. I understand that. It’s way too optimistic for a lot of people, but Parkinson’s is not curable and my optimism is not curable and so we’re a good combination.

 

Kelsey Phinney: So there you have it. The wise words from a woman who has been a care partner for most of her life and the last 18 years with my dad, she’s a huge inspiration to me and I really don’t think that I could say any of that better myself, but I will leave you with a couple of questions to consider. One, what do you do to take care of yourself? Two, what types of things can you do to make your home the safest and most comfortable environment for you and your person with Parkinson’s? Three, what can you do to make doctors visits as valuable and productive as possible. And four, what do you need in your relationship to continue to have a beautiful relationship, whether that’s marriage or parent to child or siblings? How do you ensure that your relationship is just as important as the relationship you cultivate as care partner and person with Parkinson’s. We’ll see you next time with episode five. Thanks for listening.

Connie Carpenter Phinney

Connie Carpenter Phinney is an entrepreneur, author, artist, lifelong athlete, Parkinson’s advocate and Board Chair for the Davis Phinney Foundation. Connie particularly enjoys sharing her experiences via the written word and she is an eloquent and humorous public speaker. She has two adult children, Taylor and Kelsey, with her husband Davis Phinney.

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