The Caregiving Soul:

Caregiving: Preparing for the Unknown with a Loved One

 

Dannelle speaks with Dr. Zev Minkoff, husband of Empowered Us’ Director, Eva Minkoff. In this episode, Zev shares insight into some possible ways to prepare for caregiving and how to best communicate with our loved ones. You’ll learn some of the tools he uses to stay present and centered when the uncertainty of caregiving feels overwhelming.

“We had a very intense, emotional conversation about what it looks like to be the spouse of somebody with Ehlers Danlos Syndrome (EDS)…Everything from how does taking care of the kids work? How does navigating the healthcare system work? How does being intimate work when you have a partner who gets injured easily?… I think that helped decrease my fear of the unknown”. – Dr. Zev Minkoff

Timestamps

  • 02:23 Zev’s three core values and how they connect to his caregiving experience 
  • 04:03 More about Eva’s diagnoses 
  • 06:19 How to advocate for loved ones to get a proper diagnosis 
  • 11:03 How to prepare to be a caregiver 
  • 16:39 Zev’s thoughts on Eva’s future and prognosis 
  • 21:06 How to help caregivers as a physician 
  • 23:04 How the healthcare system can support family caregivers 
  • 25:34 Zev’s passions outside of caregiving

Takeaway Learnings

  1. Preparing for a care partnership is not something we’re taught how to do. Committing to an ongoing conversation about what works and doesn’t work for both care partners’ needs create opportunities to find solutions as care needs change. 
  2. Being in a care partnership takes courage. It’s important to find ways to be both compassionate and set personal boundaries when flare ups or moments of distress occur. 
  3. Strong care partnerships, whether professional or informal, are centered around communication. An essential part of effective communication for professional caregivers in particular is asking: “What questions do you have?”. When we’re dealing with the unknown, we can support caregivers by creating an environment that normalizes questions and demonstrates empathy. 

Actionable Tips

  1. No one wants to react to an emotionally charged situation in a way we later regret. Dr. Zev described using the count down from 10 technique to take a moment before reacting. Taking a pause gives us time to respond with our best selves.
  2. The stressors of caregiving mean that we need to stay tuned in to our mental health. In addition to professional therapy, it’s important to know we have no or low-cost options as well. Using a meditation app as part of our self-care routine, making sure we’ve got the number for a crisis or support organization, like those available through the National Alliance on Mental Illness (NAMI) or the Caregiver Action Network, and checking in with a caregiving support group are a few ways we can prepare to take care of our mental and emotional health.
  3. When in situations with so many variables outside of our control, prepare as best you can for the unexpected to stay more flexible, like packing an extra bag with supplies you can’t otherwise easily access, planning extra time for travel, using a mobility device or private transportation if feasible, and of course, don’t forget the extra snacks and water.

Resources Mentioned in the Episode

  • Technically Sick – The Empowered Us show, hosted by Monica Michelle (wife of Stuart who Zev speaks with)
  • Caregiver Action Network website or the Caregiver Action Network Help Desk (The National Caregiver Hotline that Zev and Dannelle Discuss): 855-227-3640
  • Headspace: A meditation app Zev uses

Crisis and Support Organizations for Caregivers that Dannelle mentioned: 

Support groups for caregivers (local and online)

About Dr. Zev Minkoff

Dr. Zev Minkoff is an outgoing, double board-certified Pediatric Gastroenterologist and the husband of Empowered Us’ Eva Minkoff. Eva has been diagnosed with Fibromyalgia and Ehlers Danlos Syndrome. Zev’s background in medicine gives him an understanding of the medical system and a different perspective in anticipating being a future primary caregiver for his wife.

Transcript

[00:00:00] [Music] 

[00:00:06] Zev: We had a very intense emotional conversation about what it looks like to be the spouse of somebody with Ehlers-Danlos Syndrome or EDS and what my life could look like in that sense. And everything from how does taking care of the kids work? How does navigating the healthcare system work? How does being intimate work? 

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[00:00:22] When you have a partner who gets injured easily, how to adapt your life to all the challenges that come with caring for a loved one with an uncertain progressive illness. We talked about tools, perspectives, challenges, experiences, and I feel very thankful that I had that conversation so I could get a glimpse of what life could be like. I think that helped decrease my fear of the unknown, which is very understandable, but being cautiously optimistic, I think, is the better approach compared to having excessive fear of the unknown. 

[00:00:53] Dannelle (Recorded): Hello and welcome to The Caregiving Soul. The Caregiving Soul podcast is a series of conversations about what it’s like to care for loved ones in need, how we can better navigate the relationship, and the physical, emotional, and logistical complications we encounter as partners in care.  

[00:01:16] I’m your host, Dannelle LeBlanc.   

[00:01:22] [Music Ends]   

[00:01:22] Dannelle: Today we’ll be speaking with Dr. Zev Minkoff. He’s a Pediatric Gastroenterologist and husband of Empowered Us’ Eva Minkoff. Eva has been diagnosed with Fibromyalgia and Ehlers Danlos Syndrome. We’ll be talking with Dr. Minkoff about their approach to preparing for caregiving.  

[00:01:42] [Music]  

[00:01:44] Dannelle: Welcome to Dr. Zev Minkoff! 

[00:01:49] [Music Ends]   

[00:01:49] Dannelle: It’s so nice to finally meet you! 

[00:01:53] Zev: So nice to meet you Dannelle. I’ve heard so much wonderful things about you.  

[00:01:55] Dannelle: Yes, same! I’ve heard so many wonderful things. It’s great to put a face with some of the stories from your wife, Eva. And I’d just like to thank you so much for joining us. The perspective that you have as both a medical professional, as well as anticipating being a spousal caregiver is something that is more common than gets talked about.  

[00:02:23] To help us understand your perspective, what would you say, Zev, are your three core values and how do they connect to your caregiving experience? 

[00:02:34] Zev: Well, I think the core values kind of permeate throughout every aspect of my life. The first one is trying to make the world a better place. That is something that I really feel strongly about and has been since I was born, and it comes in different ways. I’m a doctor. I do understand that I have a really amazing ability to make the quality of life for the patients that I have in my community better, but I dedicate a portion of my time and my efforts to doing research so that, potentially, I can make an impact on people that I’ll never actually meet myself. So that’s the more macro level. 

[00:03:07] On the community level, being a physician in whatever area I happen to be in at that particular time, I understand that in the past, most physicians were in one place for their whole life. That seems to be less likely as time moves forward, but just having the opportunity to make a positive impact wherever I happen to be at that time. And within my own home, within my own family, making the lives of my family better. And for Eva to try to make our smaller nucleus of our family as happy and as successful as we can be.  

[00:03:38] Dannelle: I’m so glad that you mentioned that making an impact within your own home, in addition to making an impact in your community and in the larger world, because it can feel so overwhelming sometimes that we can feel like we don’t have the capacity to make a difference, but we can make a difference wherever we are in multiple ways.  

[00:04:03] Your wife, Eva has been diagnosed with fibromyalgia and Ehlers-Danlos syndrome. When I met Eva, that was actually the first time that I had heard of Ehlers-Danlos syndrome. Can you tell us what that means in terms of the diagnosis and symptoms and impact on her health?  

[00:04:25] Zev: It’s a difficult combination of things and here’s why. We, as doctors, can struggle with things that are difficult to diagnose. We can struggle with things that are difficult to treat. Both of these conditions happen to be both difficult to diagnose and difficult to treat.  

[00:04:39] Fibromyalgia is, I believe, within the realm of neurology, but some people put it in the realm of pain specialists in terms of who would actually care for it. It’s essentially a hypersensitivity of nerves throughout the body, but it’s much more than. I apologize that I can’t speak to the exact clinical criteria and I’ve tried. I’ve looked into this, and how to diagnose it, so that I could look for it in my own patients. And it’s very subtle. And it’s very difficult. 

[00:05:04] There are certain physicians that actually don’t even believe that it’s a real thing because it’s relatively new. Now there are certain kind of criteria that you can use. “Oh, if you have pain here and here and here, when I press, then you have fibromyalgia”, but that is something that is still relatively new and difficult to diagnose. And then what do you do about it? Thankfully, Eva has had the ability to see some specialists that are some of the top people. But I know that not everybody has those resources, and we found some things that worked for her to help with her pain, brain fog, some of her sensitivities to different types of food, to different temperatures, things like that. 

[00:05:40] Ehlers-Danlos has multiple different subtypes. It is very difficult to parse apart. And to have somebody that is a specialist in this is something that is recommended. The main thing that I know about it is most physicians do not feel comfortable with it. There’s increased risks of complications because it’s a connective tissue disease. Getting into how do you define connective tissue diseases and what aspects of care it impacts, it’s scary. There are only a certain number of people that really delve into it and understand exactly what these people need. The rest of us ask when we see a patient that has this, because it’s not something that we see very common.  

[00:06:19] Dannelle: It is scary. It’s scary for the person who has the condition. It’s scary for the caregiver, and scary for physicians as well, to struggle with the diagnosis and difficulty and treatment. With that being the case, what would you recommend we do as caregivers when we’re struggling trying to get a diagnosis when the symptoms may be subtle and very difficult to diagnose? 

[00:06:51] Zev: I think that this is something that advocacy is very important for – specifically advocating for ourselves and our family members, but simultaneously having realistic expectations of what comes with seeing an expert. I am very glad that Eva was able to see one of the top people in terms of her diagnosis of Fibromyalgia and Ehlers-Danlos, but at the same time, it was a lot of money and difficulty.  

[00:07:17] Part of me said, what is it going to change? Okay, we now feel more comfortable with the diagnosis, but did we walk out of that with any different action plan, goal, than we walked into it with? I have seen people that have an unrealistic, unfortunately, expectation that once they see the specialist in this field, their lives are going to be categorically different. 

[00:07:39] I don’t think that that tends to be the case for most people. Obviously, there are exceptions to the rule, but simultaneously advocating to see a top person is important and it can be very helpful, but it’s probably more so going to make you feel better about the things that you’re currently doing rather than lead to big changes about what you’re not doing. And sometimes you also can see the top person in X field, and then they tell you, “oh, you don’t have this”. So, you were putting your eggs in that basket, and it can be disappointing.  

[00:08:10] Dannelle: You mentioned an action plan, being important versus having all of the answers to whether or not the diagnosis is A, B or C. Would you say that when we go into a physician’s office, a specialist’s office, that we are asking for help to create an action plan in order to manage symptoms, versus just focusing on a diagnosis? 

[00:08:36] Zev: Yeah, I think that that’s a great question. Specifically, because I think that when you go in to see a specialist, you should have your questions ready to go. The idea that this individual in their kind of spiel and what they normally say is gonna answer your specific questions or help you with your particular subtleties of what you’re looking for might be not realistic.  

[00:08:55] What I would recommend an advocate is that if you have questions, “what’s the best way to do this?” Have that written down on your phone when you walk into that room and advocate for yourself to have some time to ask those questions, to say like, “Hey, I’m approaching it this way. Does that sound like a reasonable approach? What would you recommend in terms of how I access this care, this particular test, this therapy?” And they may not know. That can be frustrating as well, but in terms of bouncing ideas, getting a second set of eyes on what you’re currently doing, I think that’s a very good idea, because it can be hard to know what questions to answer as a physician. 

[00:09:31] Dannelle: It can be so hard to accept, but sometimes there is not a good answer. Sometimes there is no good answer and that’s really difficult.  

[00:09:42] Zev: Yeah, I struggle with that sometimes I feel that there are certain situations where I am essentially being pressured to give an answer even if there isn’t a good one. I’m a pediatrician so certain parents are open to the idea of, even the specialist, not having an answer and for other parents, or patients, that’s totally unacceptable to them and they can get very upset. And I understand that, but it’s this difficult realm. And this is something that I learned.  

[00:10:07] I’ve done some volunteering abroad in Israel. I worked in a pediatric oncology clinic in Haifa, in Israel, and I spoke with one of the doctors there and I asked why they went into this particular field. Right? Because sometimes it can be incredibly uplifting, but it can be also very sad, very difficult. And I asked why they chose that particular aspect of medicine. They said when the diagnosis is easy and the treatment is clear, it’s very easy to be a good doctor, but it takes a much better doctor to still provide very good care when the diagnosis is difficult and the treatment is difficult. I thought that that was something that was really wonderful and inspiring for myself. 

[00:10:47] Dannelle: That is such an inspiring perspective that it takes a much better doctor to manage it when it’s difficult, when it’s so hard, when there’s no good answer. So how are you and Eva preparing both physically and emotionally to become future caregiving partners as Eva requires more assistance? 

[00:11:16] Zev: Part of it’s already underway because obviously these are progressive conditions, but first and foremost, we’re having good communication about the present and the future. One of the things that we have found to be helpful is having support from physical therapy, from couples therapy, different types of therapies. And again, I understand that this is not something that everybody necessarily has access to, and that’s a shame. That’s something that we should continue to request and to fight for. 

[00:11:41] But we have advocated for ourselves and asked for these types of supports: couples therapy, coaching, physical therapy, both for Eva, for myself, and for us as a couple. We found that to be very helpful and finding ways to be adapting. Like I said, this is an aspect of my life: I just moved across the country, I just became a new physician. I’ve just started practicing on my own, finishing fellowship and being an attending physician in the last few months, adapting is the name of the game. 

[00:12:08] One of the ways that we can try to continue to do the things that we love and that we want to do, or as close to them as possible, despite Eva’s limitations, despite our limitations, as opposed to stopping them completely – Eva loves to dance, she grew up as a dancer, but there’s certain types of dance that just are not realistic for her anymore because of how demanding they are on her body. So, we have different types of dance classes, and we have found different ways of traveling, continuing to do the things that we want to do in an adaptable way and understanding that next year, 10 years from now, hopefully 50 [Laughs] years from now that we’ll hopefully continue to do those things with further adaptations. 

[00:12:45] One of the other aspects is planning. Eva and I love to travel. What I do recommend is when you’re traveling with somebody that has illness, disability, that you look into and you plan for that as part of your traveling, which is – things like sleep is a priority for Eva. We no longer take red eye flights, which is the flights overnight. Even if they’re significantly more convenient or cheaper, that’s just not something that Eva can tolerate. She can get very sick and she can have flares and it can take days for her to recover from that. Whereas for me, it would be relatively easy to kind of bounce back from.  

[00:13:20] Another thing is if you have the ability to plan for the weather where you’re going. When we were traveling in places that were extremely hot we specifically built into our plans being out of the sun in the hottest weather. So, we would go out in the morning, come in in the afternoon, go back out in the evening. Again, I know understand that not everyone can necessarily afford this, but choosing convenience and flexibility over price in certain scenarios is very important. 

[00:13:48] One of the other things that I have found is that it can be exhausting having Eva have to explain herself every time that we’re in a group and the group wants to do X, and that’s just really not realistic for Eva at this particular time. So, with her permission, I’ve kind of taken it upon myself to speak up a little bit more for her and explain why she needs X, Y, and Z when that’s not the most convenient thing. It’s interesting because I’ve discovered that I don’t even necessarily think about, “oh, that’s not the most convenient thing that this is what we need to do to help Eva”. That’s actually already built into my thought process without even being consciously aware of it.  

[00:14:24] The other thing that I really recommend is introspection about how not to get frustrated. When there are frustrating situations, I personally have found the following to be very helpful, which is counting backwards from 10 till one, very slowly. It’s amazing how things can actually change in that ten second period. And if the moment hasn’t passed, then I start again. I’ve never had to do it more than two or three times. Things just feel much different after that than they were right when I initiated that. The frustration does tend to pass at least a little bit and I can make a more level-headed decision. 

[00:14:55] Dannelle: I love that example, counting backwards from 10 when we’re frustrated. And I’m wondering if you have experienced an interaction with someone that frustrated you and in that 10 second period, something happened for that other person that was frustrating you? 

[00:15:17] Zev: The time that I was able to use this counting down from 10 tool was actually just the other day. Eva and I were camping, and it was much colder than we had anticipated at night. And we were both very, very cold to the point where Eva couldn’t sleep and to leave where we were in the middle of the night was unfortunately not realistic, even if we wanted to. What I was able to do was to take a moment, instead of getting angry, frustrated, being short with her, I was able to take a moment and count backwards from 10. 

[00:15:48] That allowed me to be able to better understand the situation, how she was feeling, what was possible and what was not possible. Also, to look for solutions while simultaneously not catastrophizing the situation. I was able to think, “okay, well I have two layers of blankets on me. I can give Eva one of my layers and while I will be colder, I think that I’m better able to deal with that than Eva is”. 

[00:16:11] And that did make a significant difference for her. And she was able to go back to sleep thankfully. I did need to be firm with her though that leaving in the middle of the night, in an area that we were, was not possible. I was able to be compassionate, and I was able to be loving, and supporting, while simultaneously being firm with what is and is not possible and what we can do within that realm. 

[00:16:34] Dannelle: Well, it sounds like it was a very effective technique. You mentioned you have the introspective, you also mentioned feeling hopeful. Can you tell us more about how you and Eva are feeling about her diagnosis and the future of her care?  

[00:16:54] Zev: One of my kind of core values is being cautiously optimistic. I feel like that is the best approach to life. And it’s something that I have been lucky to have kind of a disposition, but that’s something that I’ve also reinforced. And I recommend for everybody that’s open to perspective shift to do your best to adopt, at least try, to see if being cautiously optimistic is for you, because I think that it really is the best. 

[00:17:18] And what does that mean? That means hoping for the best, but preparing for the worst at the same time. And not spending some time thinking about what that worst could look like and having that kind of built into a sort of plan if X then Y but not spending too much time on every single detail of it, because we don’t know what’s coming next. 

[00:17:36] Essentially anything can happen any day. I don’t see why I would spend so much time and energy worrying when it’s not actually likely to impact the outcome. Thinking about what’s going to happen every second of every day, isn’t actually necessarily going to change that. So, I do my best to be cautiously optimistic.  

[00:17:54] Something that was particularly helpful for me was actually speaking with Stewart, who’s Monica’s husband, Monica, who is the host of Technically Sick. Her husband, Stewart, and I had a very intense emotional conversation about what it looks like to be the spouse of somebody with Ehlers-Danlos or EDS – what my life could look like in that sense. Everything from how does taking care of the kids work? How does navigating the healthcare system work? How does being intimate work? 

[00:18:20] When you have a partner who gets injured easily, how to adapt your life to all the challenges that come with caring for a loved one with an uncertain progressive illness. We talked about tools, perspectives, challenges, experiences, and I feel very thankful that I had that conversation so I could get a glimpse of what life could be like. I think that helped decrease my fear of the unknown, which is very understandable, but being cautiously optimistic, I think, is the better approach compared to having excessive fear of the unknown. 

[00:18:49] An aspect of being cautiously optimistic includes planning for the worst. One of the things that we did when Eva and I were with Stuart and Monica is that Eva faced a fear of hers, which is what it would be like to be in a wheelchair. Eva actually sat in Monica’s very technologically advanced smart wheelchair. And I could see that it reduced Eva’s fear about it because it took it from this thing that she had difficulty imagining and had a lot of anxiety about the potential of that happening. 

[00:19:17] And when she actually sat in it, she felt comfortable in the wheelchair itself. It was difficult for her at first, but I feel that after she was able to have that experience, she was able to be much more reasonable about it and much more levelheaded about it and actually be rational about areas that it could be helpful. For instance, potentially using a wheelchair in airports. Something that she doesn’t need all the time at this point, but would that be something that would actually be helpful for her in an airport setting to decrease the strain and the difficulty of travel on her? 

[00:19:49] That would not have been something she would have ever considered prior to having that experience of actually sitting in the wheelchair and seeing what it actually meant for her. But now that she’s had that experience, I do feel that that was able to help inform our decisions because it took out some of the fear to actually have that experience and to actually be able to see herself in it, as opposed to picturing herself in it. 

[00:20:12] For myself I’m happy to say that seeing Eva in the wheelchair was not triggering, it felt actually quite natural, and it seemed like a good tool. It didn’t seem like something that was a burden. And we actually thought about and talked about the places that it could be useful and helpful. I think that that helped both of us to better understand the reality of the situation and allow us to start planning for when we could use that particular tool, which is something that we wouldn’t have been able to have a conversation about in the past, just because of the fear that had surrounded it specifically in terms of Eva’s concerns. Obviously, we don’t know what Eva’s state is going to be down the road, but like I said, being cautiously optimistic, I think is the better approach to having excessive fear of the unknown.  

[00:20:59] Dannelle: To be cautiously optimistic we need these tools and these resources. You specifically mentioned earlier that you and Eva are preparing through good communication, adapting, and good support, which is what you just described in reaching out to Stuart, and that conversation helping to manage the worry, because the worry exists regardless. It’s about managing it. As a medical professional, Zev, how do you support family care partners that you encounter in your practice?  

[00:21:39] Zev: As a pediatrician, I interact with caregivers in every interaction with my patients because under 18, all the patients have to come with their parents and even above 18, often they come with them anyway. So, there’s an aspect of interacting with caregivers that is very much part of being a pediatrician and can be very difficult in simultaneously treating the patient and the caregiver. 

[00:22:02] I do my best to use language that is understandable. We are taught in medical school to discuss things in a way that we are talking to other doctors. And then when patients walk in the door, they do not have that. It can be very natural just to speak in “doctor speak” about this thing that you know very well. You can feel great about how great of a job you did explaining I and then the patient walks out and they didn’t understand it. And didn’t feel comfortable asking to clarify. I do my very best to use language that my patients and families can understand.  

[00:22:34] For instance, something that I deal with a lot is something called irritable bowel syndrome or functional abdominal pain. I have like phrases of how I give explanations and also the take-home reading material. I had Eva look over it (obviously not patient specific information, this is kind of more general information) to make sure that I wasn’t using “doctor speak” in it so that my patients can understand. And also, I’m working in an area of California that there’s a large Spanish speaking population. I’m trying to learn Spanish so that I can better understand and not just rely on translators.  

[00:23:04] Dannelle: How do you think the professional healthcare system can better support as as family caregivers? 

[00:23:12] Zev: One of the things that I think that we can do to help support our caregivers is to promote healthcare and mental health resources for caregivers, especially those that can no longer work in a traditional job based on the needs of the family members. I don’t know the number, but I’m sure there are many people that have lost their healthcare because they had to take care of their family member. That seems unacceptable to me, not just that, but the mental health aspect for caregivers is huge and advocating for that – I think that that is something in particular that I would love to see changed. 

[00:23:48] Dannelle: You mentioned mental health, resources and referrals. Can you give us an example of what type of referral or suggestion you might make for family members or for your patients who might need help? 

[00:24:04] Zev: Yeah, there is. I know that it used to exist. I’m not sure if it still does, but there was a national hotline – caregiver’s support hotline. I’d look for it again today in order to kind of prepare for this. I think I found something somewhat relevant, but I think that that would be an absolute minimum. I recommend looking for it nationally and locally, the caregiver resources that exist. And if anything, at least have somebody to talk to. If you don’t have those resources to have a therapist, on your own at this time, that there should be something that can help with just supporting the caregivers themselves in the short term. 

[00:24:35] There is a particular service called Headspace® that for a while was giving away, to physicians, free care through Headspace® during the pandemic. And I think that perhaps approaching them about doing the same for caregivers could be very impactful. I think that that would be very much appreciated, and those are things that can be done on your own time in the middle of the night. You don’t have to coordinate. It’s when you have time that you can do those things and they can be very helpful as well as more traditional mental health care. Understanding that it is okay to spend time, and money, on yourself, and the things that you need; that while there is somebody that is in your life that needs you. If you’re not there for you, and you’re not able to take care of yourself, your ability to help them is diminished.  

[00:25:21] Dannelle: Absolutely. And Dr. Zev, I believe the resource, the hotline, that you were referring to is available through the Caregiver Action Network. And we’ll make sure to include that in the resources for this episode. I’d like to close by asking what part of your life are you passionate about continuing as caregiving intensifies?  

[00:25:44] Zev: One thing is that Eva and I are planning on starting a family soon, and there are risks with that with Eva’s conditions. There are absolute risks with that. We understand that and it would be very reasonable for us to say that we don’t feel comfortable with those risks and to not move forward with having a family. But that’s something that we have decided, and we agreed upon. And obviously it’s going to be a challenge. Of course, starting a family will be a challenge in many ways, but extra risks, extra challenges there. That is something that we are not willing to give up on at this time and that we are cautiously optimistic about and I’m very excited about.  

[00:26:21] That is one particular aspect that we are very excited about, and it’s going to be more challenging. I am absolutely worried about spending all day taking care of patients then coming home and taking care of children and taking care of my wife, but I’m so excited about that at the same time. While it sounds draining, it sounds absolutely wonderful as well. And I can’t wait for that challenge. 

[00:26:44] Dannelle: Well, congratulations to you both. I am cautiously optimistic right along with you. And I’d like to thank you so much for joining us. This has been so enlightening.  

[00:26:56] Zev: Thank you so much for inviting me. And I really do appreciate it. I look forward to hopefully being able to help others through some of the things that I have thought of and some of the experiences that I’ve had, and hope that this strikes a cohort and is able to give some resources and at least maybe some perspective to your listeners. I really appreciate what they’re doing for their loved ones. 

[00:27:17] [Music]   

[00:27:20] Dannelle (Recorded): Thank you for joining our conversation with Dr. Zev. The tips and stories he shares, both as a husband caring for his wife and a doctor caring for his patients, provides us some insight into some possible ways to prepare for caregiving and the importance of communicating with our care partner.     

[00:27:42] For more information on Dr. Zev and preparing for caregiving, check out our show notes.    

[00:27:49] Every episode of The Caregiving Soul has a page on empoweredus.org, where you can find the extended show notes – including tips and takeaways, transcripts, and relevant resource links.      

[00:28:05] If you’d like to share your own tips related to this topic or connect with us, visit the Empowered Us Contact page or reach out to us on our social channels.      

[00:28:17] The Caregiving Soul is an Empowered Us Original presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to this show wherever you get your podcasts.     

[00:28:35] And remember, the right care includes care for you.  

[00:28:46] [Music Ends] 

Read Less

Caregiving: Preparing for the Unknown with a Loved One

 

Dannelle speaks with Dr. Zev Minkoff, husband of Empowered Us’ Director, Eva Minkoff. In this episode, Zev shares insight into some possible ways to prepare for caregiving and how to best communicate with our loved ones. You’ll learn some of the tools he uses to stay present and centered when the uncertainty of caregiving feels overwhelming.

“We had a very intense, emotional conversation about what it looks like to be the spouse of somebody with Ehlers Danlos Syndrome (EDS)…Everything from how does taking care of the kids work? How does navigating the healthcare system work? How does being intimate work when you have a partner who gets injured easily?… I think that helped decrease my fear of the unknown”. – Dr. Zev Minkoff

Timestamps

  • 02:23 Zev’s three core values and how they connect to his caregiving experience 
  • 04:03 More about Eva’s diagnoses 
  • 06:19 How to advocate for loved ones to get a proper diagnosis 
  • 11:03 How to prepare to be a caregiver 
  • 16:39 Zev’s thoughts on Eva’s future and prognosis 
  • 21:06 How to help caregivers as a physician 
  • 23:04 How the healthcare system can support family caregivers 
  • 25:34 Zev’s passions outside of caregiving

Takeaway Learnings

  1. Preparing for a care partnership is not something we’re taught how to do. Committing to an ongoing conversation about what works and doesn’t work for both care partners’ needs create opportunities to find solutions as care needs change. 
  2. Being in a care partnership takes courage. It’s important to find ways to be both compassionate and set personal boundaries when flare ups or moments of distress occur. 
  3. Strong care partnerships, whether professional or informal, are centered around communication. An essential part of effective communication for professional caregivers in particular is asking: “What questions do you have?”. When we’re dealing with the unknown, we can support caregivers by creating an environment that normalizes questions and demonstrates empathy. 

Actionable Tips

  1. No one wants to react to an emotionally charged situation in a way we later regret. Dr. Zev described using the count down from 10 technique to take a moment before reacting. Taking a pause gives us time to respond with our best selves.
  2. The stressors of caregiving mean that we need to stay tuned in to our mental health. In addition to professional therapy, it’s important to know we have no or low-cost options as well. Using a meditation app as part of our self-care routine, making sure we’ve got the number for a crisis or support organization, like those available through the National Alliance on Mental Illness (NAMI) or the Caregiver Action Network, and checking in with a caregiving support group are a few ways we can prepare to take care of our mental and emotional health.
  3. When in situations with so many variables outside of our control, prepare as best you can for the unexpected to stay more flexible, like packing an extra bag with supplies you can’t otherwise easily access, planning extra time for travel, using a mobility device or private transportation if feasible, and of course, don’t forget the extra snacks and water.

Resources Mentioned in the Episode

  • Technically Sick – The Empowered Us show, hosted by Monica Michelle (wife of Stuart who Zev speaks with)
  • Caregiver Action Network website or the Caregiver Action Network Help Desk (The National Caregiver Hotline that Zev and Dannelle Discuss): 855-227-3640
  • Headspace: A meditation app Zev uses

Crisis and Support Organizations for Caregivers that Dannelle mentioned: 

Support groups for caregivers (local and online)

About Dr. Zev Minkoff

Dr. Zev Minkoff is an outgoing, double board-certified Pediatric Gastroenterologist and the husband of Empowered Us’ Eva Minkoff. Eva has been diagnosed with Fibromyalgia and Ehlers Danlos Syndrome. Zev’s background in medicine gives him an understanding of the medical system and a different perspective in anticipating being a future primary caregiver for his wife.

Transcript

[00:00:00] [Music] 

[00:00:06] Zev: We had a very intense emotional conversation about what it looks like to be the spouse of somebody with Ehlers-Danlos Syndrome or EDS and what my life could look like in that sense. And everything from how does taking care of the kids work? How does navigating the healthcare system work? How does being intimate work? 

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[00:00:22] When you have a partner who gets injured easily, how to adapt your life to all the challenges that come with caring for a loved one with an uncertain progressive illness. We talked about tools, perspectives, challenges, experiences, and I feel very thankful that I had that conversation so I could get a glimpse of what life could be like. I think that helped decrease my fear of the unknown, which is very understandable, but being cautiously optimistic, I think, is the better approach compared to having excessive fear of the unknown. 

[00:00:53] Dannelle (Recorded): Hello and welcome to The Caregiving Soul. The Caregiving Soul podcast is a series of conversations about what it’s like to care for loved ones in need, how we can better navigate the relationship, and the physical, emotional, and logistical complications we encounter as partners in care.  

[00:01:16] I’m your host, Dannelle LeBlanc.   

[00:01:22] [Music Ends]   

[00:01:22] Dannelle: Today we’ll be speaking with Dr. Zev Minkoff. He’s a Pediatric Gastroenterologist and husband of Empowered Us’ Eva Minkoff. Eva has been diagnosed with Fibromyalgia and Ehlers Danlos Syndrome. We’ll be talking with Dr. Minkoff about their approach to preparing for caregiving.  

[00:01:42] [Music]  

[00:01:44] Dannelle: Welcome to Dr. Zev Minkoff! 

[00:01:49] [Music Ends]   

[00:01:49] Dannelle: It’s so nice to finally meet you! 

[00:01:53] Zev: So nice to meet you Dannelle. I’ve heard so much wonderful things about you.  

[00:01:55] Dannelle: Yes, same! I’ve heard so many wonderful things. It’s great to put a face with some of the stories from your wife, Eva. And I’d just like to thank you so much for joining us. The perspective that you have as both a medical professional, as well as anticipating being a spousal caregiver is something that is more common than gets talked about.  

[00:02:23] To help us understand your perspective, what would you say, Zev, are your three core values and how do they connect to your caregiving experience? 

[00:02:34] Zev: Well, I think the core values kind of permeate throughout every aspect of my life. The first one is trying to make the world a better place. That is something that I really feel strongly about and has been since I was born, and it comes in different ways. I’m a doctor. I do understand that I have a really amazing ability to make the quality of life for the patients that I have in my community better, but I dedicate a portion of my time and my efforts to doing research so that, potentially, I can make an impact on people that I’ll never actually meet myself. So that’s the more macro level. 

[00:03:07] On the community level, being a physician in whatever area I happen to be in at that particular time, I understand that in the past, most physicians were in one place for their whole life. That seems to be less likely as time moves forward, but just having the opportunity to make a positive impact wherever I happen to be at that time. And within my own home, within my own family, making the lives of my family better. And for Eva to try to make our smaller nucleus of our family as happy and as successful as we can be.  

[00:03:38] Dannelle: I’m so glad that you mentioned that making an impact within your own home, in addition to making an impact in your community and in the larger world, because it can feel so overwhelming sometimes that we can feel like we don’t have the capacity to make a difference, but we can make a difference wherever we are in multiple ways.  

[00:04:03] Your wife, Eva has been diagnosed with fibromyalgia and Ehlers-Danlos syndrome. When I met Eva, that was actually the first time that I had heard of Ehlers-Danlos syndrome. Can you tell us what that means in terms of the diagnosis and symptoms and impact on her health?  

[00:04:25] Zev: It’s a difficult combination of things and here’s why. We, as doctors, can struggle with things that are difficult to diagnose. We can struggle with things that are difficult to treat. Both of these conditions happen to be both difficult to diagnose and difficult to treat.  

[00:04:39] Fibromyalgia is, I believe, within the realm of neurology, but some people put it in the realm of pain specialists in terms of who would actually care for it. It’s essentially a hypersensitivity of nerves throughout the body, but it’s much more than. I apologize that I can’t speak to the exact clinical criteria and I’ve tried. I’ve looked into this, and how to diagnose it, so that I could look for it in my own patients. And it’s very subtle. And it’s very difficult. 

[00:05:04] There are certain physicians that actually don’t even believe that it’s a real thing because it’s relatively new. Now there are certain kind of criteria that you can use. “Oh, if you have pain here and here and here, when I press, then you have fibromyalgia”, but that is something that is still relatively new and difficult to diagnose. And then what do you do about it? Thankfully, Eva has had the ability to see some specialists that are some of the top people. But I know that not everybody has those resources, and we found some things that worked for her to help with her pain, brain fog, some of her sensitivities to different types of food, to different temperatures, things like that. 

[00:05:40] Ehlers-Danlos has multiple different subtypes. It is very difficult to parse apart. And to have somebody that is a specialist in this is something that is recommended. The main thing that I know about it is most physicians do not feel comfortable with it. There’s increased risks of complications because it’s a connective tissue disease. Getting into how do you define connective tissue diseases and what aspects of care it impacts, it’s scary. There are only a certain number of people that really delve into it and understand exactly what these people need. The rest of us ask when we see a patient that has this, because it’s not something that we see very common.  

[00:06:19] Dannelle: It is scary. It’s scary for the person who has the condition. It’s scary for the caregiver, and scary for physicians as well, to struggle with the diagnosis and difficulty and treatment. With that being the case, what would you recommend we do as caregivers when we’re struggling trying to get a diagnosis when the symptoms may be subtle and very difficult to diagnose? 

[00:06:51] Zev: I think that this is something that advocacy is very important for – specifically advocating for ourselves and our family members, but simultaneously having realistic expectations of what comes with seeing an expert. I am very glad that Eva was able to see one of the top people in terms of her diagnosis of Fibromyalgia and Ehlers-Danlos, but at the same time, it was a lot of money and difficulty.  

[00:07:17] Part of me said, what is it going to change? Okay, we now feel more comfortable with the diagnosis, but did we walk out of that with any different action plan, goal, than we walked into it with? I have seen people that have an unrealistic, unfortunately, expectation that once they see the specialist in this field, their lives are going to be categorically different. 

[00:07:39] I don’t think that that tends to be the case for most people. Obviously, there are exceptions to the rule, but simultaneously advocating to see a top person is important and it can be very helpful, but it’s probably more so going to make you feel better about the things that you’re currently doing rather than lead to big changes about what you’re not doing. And sometimes you also can see the top person in X field, and then they tell you, “oh, you don’t have this”. So, you were putting your eggs in that basket, and it can be disappointing.  

[00:08:10] Dannelle: You mentioned an action plan, being important versus having all of the answers to whether or not the diagnosis is A, B or C. Would you say that when we go into a physician’s office, a specialist’s office, that we are asking for help to create an action plan in order to manage symptoms, versus just focusing on a diagnosis? 

[00:08:36] Zev: Yeah, I think that that’s a great question. Specifically, because I think that when you go in to see a specialist, you should have your questions ready to go. The idea that this individual in their kind of spiel and what they normally say is gonna answer your specific questions or help you with your particular subtleties of what you’re looking for might be not realistic.  

[00:08:55] What I would recommend an advocate is that if you have questions, “what’s the best way to do this?” Have that written down on your phone when you walk into that room and advocate for yourself to have some time to ask those questions, to say like, “Hey, I’m approaching it this way. Does that sound like a reasonable approach? What would you recommend in terms of how I access this care, this particular test, this therapy?” And they may not know. That can be frustrating as well, but in terms of bouncing ideas, getting a second set of eyes on what you’re currently doing, I think that’s a very good idea, because it can be hard to know what questions to answer as a physician. 

[00:09:31] Dannelle: It can be so hard to accept, but sometimes there is not a good answer. Sometimes there is no good answer and that’s really difficult.  

[00:09:42] Zev: Yeah, I struggle with that sometimes I feel that there are certain situations where I am essentially being pressured to give an answer even if there isn’t a good one. I’m a pediatrician so certain parents are open to the idea of, even the specialist, not having an answer and for other parents, or patients, that’s totally unacceptable to them and they can get very upset. And I understand that, but it’s this difficult realm. And this is something that I learned.  

[00:10:07] I’ve done some volunteering abroad in Israel. I worked in a pediatric oncology clinic in Haifa, in Israel, and I spoke with one of the doctors there and I asked why they went into this particular field. Right? Because sometimes it can be incredibly uplifting, but it can be also very sad, very difficult. And I asked why they chose that particular aspect of medicine. They said when the diagnosis is easy and the treatment is clear, it’s very easy to be a good doctor, but it takes a much better doctor to still provide very good care when the diagnosis is difficult and the treatment is difficult. I thought that that was something that was really wonderful and inspiring for myself. 

[00:10:47] Dannelle: That is such an inspiring perspective that it takes a much better doctor to manage it when it’s difficult, when it’s so hard, when there’s no good answer. So how are you and Eva preparing both physically and emotionally to become future caregiving partners as Eva requires more assistance? 

[00:11:16] Zev: Part of it’s already underway because obviously these are progressive conditions, but first and foremost, we’re having good communication about the present and the future. One of the things that we have found to be helpful is having support from physical therapy, from couples therapy, different types of therapies. And again, I understand that this is not something that everybody necessarily has access to, and that’s a shame. That’s something that we should continue to request and to fight for. 

[00:11:41] But we have advocated for ourselves and asked for these types of supports: couples therapy, coaching, physical therapy, both for Eva, for myself, and for us as a couple. We found that to be very helpful and finding ways to be adapting. Like I said, this is an aspect of my life: I just moved across the country, I just became a new physician. I’ve just started practicing on my own, finishing fellowship and being an attending physician in the last few months, adapting is the name of the game. 

[00:12:08] One of the ways that we can try to continue to do the things that we love and that we want to do, or as close to them as possible, despite Eva’s limitations, despite our limitations, as opposed to stopping them completely – Eva loves to dance, she grew up as a dancer, but there’s certain types of dance that just are not realistic for her anymore because of how demanding they are on her body. So, we have different types of dance classes, and we have found different ways of traveling, continuing to do the things that we want to do in an adaptable way and understanding that next year, 10 years from now, hopefully 50 [Laughs] years from now that we’ll hopefully continue to do those things with further adaptations. 

[00:12:45] One of the other aspects is planning. Eva and I love to travel. What I do recommend is when you’re traveling with somebody that has illness, disability, that you look into and you plan for that as part of your traveling, which is – things like sleep is a priority for Eva. We no longer take red eye flights, which is the flights overnight. Even if they’re significantly more convenient or cheaper, that’s just not something that Eva can tolerate. She can get very sick and she can have flares and it can take days for her to recover from that. Whereas for me, it would be relatively easy to kind of bounce back from.  

[00:13:20] Another thing is if you have the ability to plan for the weather where you’re going. When we were traveling in places that were extremely hot we specifically built into our plans being out of the sun in the hottest weather. So, we would go out in the morning, come in in the afternoon, go back out in the evening. Again, I know understand that not everyone can necessarily afford this, but choosing convenience and flexibility over price in certain scenarios is very important. 

[00:13:48] One of the other things that I have found is that it can be exhausting having Eva have to explain herself every time that we’re in a group and the group wants to do X, and that’s just really not realistic for Eva at this particular time. So, with her permission, I’ve kind of taken it upon myself to speak up a little bit more for her and explain why she needs X, Y, and Z when that’s not the most convenient thing. It’s interesting because I’ve discovered that I don’t even necessarily think about, “oh, that’s not the most convenient thing that this is what we need to do to help Eva”. That’s actually already built into my thought process without even being consciously aware of it.  

[00:14:24] The other thing that I really recommend is introspection about how not to get frustrated. When there are frustrating situations, I personally have found the following to be very helpful, which is counting backwards from 10 till one, very slowly. It’s amazing how things can actually change in that ten second period. And if the moment hasn’t passed, then I start again. I’ve never had to do it more than two or three times. Things just feel much different after that than they were right when I initiated that. The frustration does tend to pass at least a little bit and I can make a more level-headed decision. 

[00:14:55] Dannelle: I love that example, counting backwards from 10 when we’re frustrated. And I’m wondering if you have experienced an interaction with someone that frustrated you and in that 10 second period, something happened for that other person that was frustrating you? 

[00:15:17] Zev: The time that I was able to use this counting down from 10 tool was actually just the other day. Eva and I were camping, and it was much colder than we had anticipated at night. And we were both very, very cold to the point where Eva couldn’t sleep and to leave where we were in the middle of the night was unfortunately not realistic, even if we wanted to. What I was able to do was to take a moment, instead of getting angry, frustrated, being short with her, I was able to take a moment and count backwards from 10. 

[00:15:48] That allowed me to be able to better understand the situation, how she was feeling, what was possible and what was not possible. Also, to look for solutions while simultaneously not catastrophizing the situation. I was able to think, “okay, well I have two layers of blankets on me. I can give Eva one of my layers and while I will be colder, I think that I’m better able to deal with that than Eva is”. 

[00:16:11] And that did make a significant difference for her. And she was able to go back to sleep thankfully. I did need to be firm with her though that leaving in the middle of the night, in an area that we were, was not possible. I was able to be compassionate, and I was able to be loving, and supporting, while simultaneously being firm with what is and is not possible and what we can do within that realm. 

[00:16:34] Dannelle: Well, it sounds like it was a very effective technique. You mentioned you have the introspective, you also mentioned feeling hopeful. Can you tell us more about how you and Eva are feeling about her diagnosis and the future of her care?  

[00:16:54] Zev: One of my kind of core values is being cautiously optimistic. I feel like that is the best approach to life. And it’s something that I have been lucky to have kind of a disposition, but that’s something that I’ve also reinforced. And I recommend for everybody that’s open to perspective shift to do your best to adopt, at least try, to see if being cautiously optimistic is for you, because I think that it really is the best. 

[00:17:18] And what does that mean? That means hoping for the best, but preparing for the worst at the same time. And not spending some time thinking about what that worst could look like and having that kind of built into a sort of plan if X then Y but not spending too much time on every single detail of it, because we don’t know what’s coming next. 

[00:17:36] Essentially anything can happen any day. I don’t see why I would spend so much time and energy worrying when it’s not actually likely to impact the outcome. Thinking about what’s going to happen every second of every day, isn’t actually necessarily going to change that. So, I do my best to be cautiously optimistic.  

[00:17:54] Something that was particularly helpful for me was actually speaking with Stewart, who’s Monica’s husband, Monica, who is the host of Technically Sick. Her husband, Stewart, and I had a very intense emotional conversation about what it looks like to be the spouse of somebody with Ehlers-Danlos or EDS – what my life could look like in that sense. Everything from how does taking care of the kids work? How does navigating the healthcare system work? How does being intimate work? 

[00:18:20] When you have a partner who gets injured easily, how to adapt your life to all the challenges that come with caring for a loved one with an uncertain progressive illness. We talked about tools, perspectives, challenges, experiences, and I feel very thankful that I had that conversation so I could get a glimpse of what life could be like. I think that helped decrease my fear of the unknown, which is very understandable, but being cautiously optimistic, I think, is the better approach compared to having excessive fear of the unknown. 

[00:18:49] An aspect of being cautiously optimistic includes planning for the worst. One of the things that we did when Eva and I were with Stuart and Monica is that Eva faced a fear of hers, which is what it would be like to be in a wheelchair. Eva actually sat in Monica’s very technologically advanced smart wheelchair. And I could see that it reduced Eva’s fear about it because it took it from this thing that she had difficulty imagining and had a lot of anxiety about the potential of that happening. 

[00:19:17] And when she actually sat in it, she felt comfortable in the wheelchair itself. It was difficult for her at first, but I feel that after she was able to have that experience, she was able to be much more reasonable about it and much more levelheaded about it and actually be rational about areas that it could be helpful. For instance, potentially using a wheelchair in airports. Something that she doesn’t need all the time at this point, but would that be something that would actually be helpful for her in an airport setting to decrease the strain and the difficulty of travel on her? 

[00:19:49] That would not have been something she would have ever considered prior to having that experience of actually sitting in the wheelchair and seeing what it actually meant for her. But now that she’s had that experience, I do feel that that was able to help inform our decisions because it took out some of the fear to actually have that experience and to actually be able to see herself in it, as opposed to picturing herself in it. 

[00:20:12] For myself I’m happy to say that seeing Eva in the wheelchair was not triggering, it felt actually quite natural, and it seemed like a good tool. It didn’t seem like something that was a burden. And we actually thought about and talked about the places that it could be useful and helpful. I think that that helped both of us to better understand the reality of the situation and allow us to start planning for when we could use that particular tool, which is something that we wouldn’t have been able to have a conversation about in the past, just because of the fear that had surrounded it specifically in terms of Eva’s concerns. Obviously, we don’t know what Eva’s state is going to be down the road, but like I said, being cautiously optimistic, I think is the better approach to having excessive fear of the unknown.  

[00:20:59] Dannelle: To be cautiously optimistic we need these tools and these resources. You specifically mentioned earlier that you and Eva are preparing through good communication, adapting, and good support, which is what you just described in reaching out to Stuart, and that conversation helping to manage the worry, because the worry exists regardless. It’s about managing it. As a medical professional, Zev, how do you support family care partners that you encounter in your practice?  

[00:21:39] Zev: As a pediatrician, I interact with caregivers in every interaction with my patients because under 18, all the patients have to come with their parents and even above 18, often they come with them anyway. So, there’s an aspect of interacting with caregivers that is very much part of being a pediatrician and can be very difficult in simultaneously treating the patient and the caregiver. 

[00:22:02] I do my best to use language that is understandable. We are taught in medical school to discuss things in a way that we are talking to other doctors. And then when patients walk in the door, they do not have that. It can be very natural just to speak in “doctor speak” about this thing that you know very well. You can feel great about how great of a job you did explaining I and then the patient walks out and they didn’t understand it. And didn’t feel comfortable asking to clarify. I do my very best to use language that my patients and families can understand.  

[00:22:34] For instance, something that I deal with a lot is something called irritable bowel syndrome or functional abdominal pain. I have like phrases of how I give explanations and also the take-home reading material. I had Eva look over it (obviously not patient specific information, this is kind of more general information) to make sure that I wasn’t using “doctor speak” in it so that my patients can understand. And also, I’m working in an area of California that there’s a large Spanish speaking population. I’m trying to learn Spanish so that I can better understand and not just rely on translators.  

[00:23:04] Dannelle: How do you think the professional healthcare system can better support as as family caregivers? 

[00:23:12] Zev: One of the things that I think that we can do to help support our caregivers is to promote healthcare and mental health resources for caregivers, especially those that can no longer work in a traditional job based on the needs of the family members. I don’t know the number, but I’m sure there are many people that have lost their healthcare because they had to take care of their family member. That seems unacceptable to me, not just that, but the mental health aspect for caregivers is huge and advocating for that – I think that that is something in particular that I would love to see changed. 

[00:23:48] Dannelle: You mentioned mental health, resources and referrals. Can you give us an example of what type of referral or suggestion you might make for family members or for your patients who might need help? 

[00:24:04] Zev: Yeah, there is. I know that it used to exist. I’m not sure if it still does, but there was a national hotline – caregiver’s support hotline. I’d look for it again today in order to kind of prepare for this. I think I found something somewhat relevant, but I think that that would be an absolute minimum. I recommend looking for it nationally and locally, the caregiver resources that exist. And if anything, at least have somebody to talk to. If you don’t have those resources to have a therapist, on your own at this time, that there should be something that can help with just supporting the caregivers themselves in the short term. 

[00:24:35] There is a particular service called Headspace® that for a while was giving away, to physicians, free care through Headspace® during the pandemic. And I think that perhaps approaching them about doing the same for caregivers could be very impactful. I think that that would be very much appreciated, and those are things that can be done on your own time in the middle of the night. You don’t have to coordinate. It’s when you have time that you can do those things and they can be very helpful as well as more traditional mental health care. Understanding that it is okay to spend time, and money, on yourself, and the things that you need; that while there is somebody that is in your life that needs you. If you’re not there for you, and you’re not able to take care of yourself, your ability to help them is diminished.  

[00:25:21] Dannelle: Absolutely. And Dr. Zev, I believe the resource, the hotline, that you were referring to is available through the Caregiver Action Network. And we’ll make sure to include that in the resources for this episode. I’d like to close by asking what part of your life are you passionate about continuing as caregiving intensifies?  

[00:25:44] Zev: One thing is that Eva and I are planning on starting a family soon, and there are risks with that with Eva’s conditions. There are absolute risks with that. We understand that and it would be very reasonable for us to say that we don’t feel comfortable with those risks and to not move forward with having a family. But that’s something that we have decided, and we agreed upon. And obviously it’s going to be a challenge. Of course, starting a family will be a challenge in many ways, but extra risks, extra challenges there. That is something that we are not willing to give up on at this time and that we are cautiously optimistic about and I’m very excited about.  

[00:26:21] That is one particular aspect that we are very excited about, and it’s going to be more challenging. I am absolutely worried about spending all day taking care of patients then coming home and taking care of children and taking care of my wife, but I’m so excited about that at the same time. While it sounds draining, it sounds absolutely wonderful as well. And I can’t wait for that challenge. 

[00:26:44] Dannelle: Well, congratulations to you both. I am cautiously optimistic right along with you. And I’d like to thank you so much for joining us. This has been so enlightening.  

[00:26:56] Zev: Thank you so much for inviting me. And I really do appreciate it. I look forward to hopefully being able to help others through some of the things that I have thought of and some of the experiences that I’ve had, and hope that this strikes a cohort and is able to give some resources and at least maybe some perspective to your listeners. I really appreciate what they’re doing for their loved ones. 

[00:27:17] [Music]   

[00:27:20] Dannelle (Recorded): Thank you for joining our conversation with Dr. Zev. The tips and stories he shares, both as a husband caring for his wife and a doctor caring for his patients, provides us some insight into some possible ways to prepare for caregiving and the importance of communicating with our care partner.     

[00:27:42] For more information on Dr. Zev and preparing for caregiving, check out our show notes.    

[00:27:49] Every episode of The Caregiving Soul has a page on empoweredus.org, where you can find the extended show notes – including tips and takeaways, transcripts, and relevant resource links.      

[00:28:05] If you’d like to share your own tips related to this topic or connect with us, visit the Empowered Us Contact page or reach out to us on our social channels.      

[00:28:17] The Caregiving Soul is an Empowered Us Original presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to this show wherever you get your podcasts.     

[00:28:35] And remember, the right care includes care for you.  

[00:28:46] [Music Ends] 

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