Almost two years ago her husband was diagnosed with early onset Parkinson's Disease. They have three kids, a mortgage to pay, and he has developed some compulsive behaviors he isn't proud of. Esther helps them learn how to turn off the 'caregiver,' and remember they are much more than that to each other.
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00:00:00what you're about to hear is an unscripted one time couples counseling session it contains mature themes and listener discretion is advised for the purposes of maintaining confidentiality names and some identifiable characteristics have been removed but their voices and their stories are real among the top stressors in any
00:00:26couple's relationship our family relationships is death and illness I'll be with you in the Senate health and that's true but you picture being I have early onset Parkinson's mom I was diagnosed about a year ago this is a young couple direct to beginning of their life together they
00:00:52have three young children and their entire life has begun change more and faster that they can even get their head around yeah feels so ill equipped to handle something that you know giving where I know that %HESITATION action is %HESITATION is it hard for me not being able
00:01:25to get he saw it fashion hiding stuff love him so much may want to put him and conditionally angry and scared when I come home from work there are some days when it's all I can do just to get in the door and not have to talk about
00:01:48anything she deserves better than that the beauty of the request from the intake interview was not how should we deal with his illness it was her saying how do we continue to experience a sense as young as beautiful as vibrant as loving and the sexual I'm not ready
00:02:15to just not be debt I still want us to experience alive ness and vitality between the two of us piece this is where should we begin with us there around and I feel like we've been in survival mode for so long fundamentally I think we have two different
00:02:45like figures that life and I think years as that you would lose me and mine is but we wouldn't Liz just be a survival mode for so long that we're not really living it's been good at living before not good at feeling alive yeah yeah I know how
00:03:06you are most more focused on the feeling dead yeah so we're putting yeah that's a good way to put it put it into words I think like personally with my with all the health stuff that's how we know you finance thirty nine arm it's like and so much
00:03:26time doing doctors appointments and medication and all that it's like just finding a day were like I don't feel like crap is I challenge all the medications are to control symptoms there's no arms no medication for that to change the trajectory of the disease so it's it's just
00:03:48a you doing any of your own things too exercise on what can on some boxing and swimming and running and cycling they said the boxing is the one finds the new rule Parkinson's it's a very intense work out but it's kind of cathartic and same time because you
00:04:07get to hit something that helps and I you part of a group any type of group do you have a source of support from it support and information both I'm we've taken some classes informational sessions who had one once a month for the last school year and that
00:04:26was very informative as far as support group I'm I'm not really in one right now just because I don't feel like I'm in a place for that so meaning in some ways I just don't want to face it so seeing people that are more advanced in the disease
00:04:43is a little right sounding so it's kind of like the Oscars and sand anything %HESITATION think angels part two thing is just part of it average age for diagnosis is fifty five so in most of these groups I'm a good ten years younger than everybody else in the
00:05:02room twenty from twenty in most cases because in the average age of diagnosis of fifty five but then you know most people that are in groups like that have had the disease for awhile so there sixty seventy and and higher so finding people to relate with that are
00:05:22going to the same things as it is in a bit of a challenge the first person we talked to after the diagnosis was like this can be the best thing that ever happened to you you know eat it's a great time to take early retirement and do a
00:05:38new class every day all these classes are offered to lead to a different exercise class every day and all of those things are offered during the work day so if you can't retire and you have kids who need to be at dance class in school and reading homework
00:05:56it's hard to relate to people who are retired yep yep yep yeah and don't have little kids in the house because it's really different to like it's you know we talked about telling our kids went and they were like you know so hard I had to call my
00:06:09daughter college but was like my daughter was too so that was a real different conversation and you sold your kids and addiction and did change anything about the they are would you have to continue on now on that just being that kids with Daddy so in general there
00:06:28and they're just standing kids at that age arm our our middle son had a bit of a hard time he went through a couple weeks where we told them but he was still processing and he wasn't asking questions so he was going to this thing where he thought
00:06:45he would catch it just like playing with Daddy so once that came out it was %HESITATION we cannot acted him on that he's not as forget about it without like we had to tell them because they knew something was going on and we don't want to lose their
00:07:02trust there were a lot of extra appointments and a lot of shuffling them to different places and I could see that the adults were all worried we didn't want them to hear especially the oldest from somebody else so we told them a very the children's book origin yeah
00:07:23you have three kids you have both sets of parents yes you'll so are on the giants yes you are the youngest of three all these people are part of your life and friends so feel so lonely sometimes I say more because what's gonna what's happening and I think
00:07:51sometimes happens is that there's such an emphasis on the physical and on how you doing and how you're feeling in your exhaustion and this and that that date the rest doesn't get enough attention not how you feel that's what this means for you not how you're dealing with
00:08:08it as a couple not how you are not going to classes where they keep calling you a care giver and about my life to that it's the worst thing ever that was like our whole class we took once a month for like what nine months nine months make
00:08:23the call this the care givers we can ever break out like a partner care part whatever it's still it's a horrible right now so for have you been able to preserve the wife and the husband the man and a woman the partners to lovers we're trying but I
00:08:42think that a lot of times we just feel like we're surviving I think you go I think we are partly %HESITATION it was quite a few %HESITATION I think I tend to defer to her on raising the children and that kind of thing %HESITATION so raising the children
00:09:09and what it is %HESITATION housework and the stereo typical %HESITATION I don't think you have the language less but he means the emotional work I'm in charge of connecting hiring conversation so it's my job to talk about feelings connection the motion state of the relationship that I I
00:09:39have heard you all the luck she said all the talking the the family I was raised in was %HESITATION we didn't talk a whole lot it was like anyone I know my parents let me but it was never wasn't sent off an arm and so I just don't
00:09:59bring it up very often so did you choose this woman I think in some ways it was because of that because she this is gonna sound cheesy because that's okay we like to like it's at sign up for it with movies comment that you make me want to
00:10:16be a better man it's kind of like that where she brings out of me tell when's the last time you told her that not ten seconds help %HESITATION so a gonna do it again but this time you can look at her rather than me you make me wanna
00:10:36be a better man so why she knows the man she's with and she knows he's an introvert and she knows that she would come home and keep to himself and not speak much at this point where she needs to feel more connected with him she wants a little
00:10:55more a little bit more of his internal voice of what goes on inside of him so that she doesn't she like she has to do all the talking for her and for and that's why when he begins to talk about why in fact she did leave it to
00:11:15her to do what she clearly koristi emotional work I encourage him to speak that which he made any sense but no less feel king guy with that you help me do the things that I never thought I could do you are so amazing with with friends and family
00:11:42in our lives that I can take that for granted sometimes you make me can I conference on Mike today right here right now right here right now keep going really mom your loan if gets no kids we have time they have nowhere else to be I feel like
00:12:07one thanksgiving going is singing when I get home I love that noon stop everything you're doing to say goodbye greatly when I come home I know I don't stand a lot but that means a lot this is where I stall out as I can't think I can't have
00:12:27anything else to say even when I come home and I don't say a word to you now it's not because I don't want to talk to you sit in your own words when I get home within a day I feel like you always try and take the time
00:12:46to C. harvest day is going check in to highs and lows and I know I'm not always good at participating in a it's always amazing to me that you take the time to do that really appreciate it I feel like you do a lot of things that I
00:13:07have a hard time doing and I think that's why I don't want to spend my life with you and this is something that you could do better what would it be you may not become as extroverted as it is possible right arm but you couldn't be more often
00:13:29reminding her that you're actually appreciate the way he goes about it just something I can do better I think it would be telling you what I see in our children just how you bring these amazing people out of them %HESITATION I think our kids are very in tune
00:13:52with a lot of their motions because you help them with that I don't do that come you help me see that I can be a better father and a better husband just by interacting with him as more you bring the boundaries about which is good that has me
00:14:19but they need both essential to take and actually I would say you're one of the most appreciative husbands time now really thanks the thing I worry about is when you don't tell me not like the little stuff and I feel really appreciate it so worried that you don't
00:14:38tell me the stuff that you're afraid of rushing off because that's what makes me were all of quiet because I don't know when that either she was going to drop that makes sense thinks she highlights a very important distinction here I worry that you're quiet not because you
00:15:02have nothing to say but I worry that you are quiet because in fact you have something very important that you don't want to say and she knows the distinction between his being quiet introverted versus his office skating hiding something that she actually ought to let her know speak
00:15:32to the he worried that Heini won't bring the the big stuff to you that the things and I'm ashamed of when she says the things you're afraid of what are we talking about dad's for a lot our married life I've struggled with addiction to **** like she said
00:15:55earlier one of my biggest fears is that I will do something to lose her I get that I married someone quieter and it's not the quiet that bothers me it's when you don't know if the quiet is not having something to say or if the quiet is hiding
00:16:18things and then in a sense something is off then I feel really was that all my life is so busy I don't want to have to whole things out of you I just want you to tell me I can't love you are except you for who you are
00:16:36if you don't share with me I know you worry about losing me I worry about us not ever really sharing that and moving forward not sharing well a huge thing is that when he came was on one of his medications %HESITATION they told us when he went on
00:16:58it that it could bring out very compulsive behaviors and that he needed to call the doctor at the slightest inkling of a compulsive behavior at that for most men it was sacks for most women were shopping and we talked about it and he promised that he would come
00:17:18to me but he didn't come to me and tell it was really out of control by the time he told me it's an honestly it didn't feel like she told me because he wanted to tell me he told me because we were on the way to a doctor's
00:17:35appointment he knew he needed to get the medication adjusted he knew I'd be in the doctor's appointment if it wasn't for that I don't know if you would've told me so I got this bomb dropped on me while I'm driving our to the doctors and then we were
00:17:53going to have our first big date night like context so we had our first like great big night out honeymoon not honeymoon anniversary and I'm still processing that he spent our savings and that I don't necessarily believe what he says he spent the money on so I never
00:18:18know if I've gotten to the bottom of it because I know he screamed I know is afraid of losing me he has me you have me I'm left in the state of fear not knowing what is coming or is there more than I need some now and you've
00:18:36had this conversation and this is this is where it usually stops right about here and he says he's sorry and I don't want to feel guilty I should feel guilty why shouldn't he can give twelve and this is part of problem I feel like no I mean isn't
00:18:55that the amongst other things but isn't that one appropriate response to when you've done something that's it's true I don't I feel like I have to be so perfect when he comes to me about something because I don't want to shut him up more safety say feels bad
00:19:13about something you come get man because I mean I don't get to be thing like I feel like I submit some point like I didn't put the kids in the single summer camp all three of them twenty four hours a day seven days a week all summer even
00:19:32when he was out of commission for more than two weeks because but we don't have the money because the whatever you spent about him and I don't get to be mad because they have to be a safe place to tell things too you know this is a quintessential
00:19:51moment that shows what she means when she says I do the emotional work he should feel that it's normal that you should feel guilty but if he feels bad that she feels that she has to go and attend to him to make him feel better to bring him
00:20:07up to pamper him which then reserves her possibility of actually see how mad she is about the fact that he squandered their entire life savings and so she's caught because she has nothing to gain from being mad because then she's would feel so bad that she has to
00:20:25take care of him and on the other end she needs a room for her feelings as well this is a new direction that I think so many of us recognize you're listening to where should we begin with Esther Perot will be back in a minute now back to
00:20:57where should we begin with Esther Perot I do resent that but I don't know how that passed it because really worried that if you tell him you're mad that he's gonna go in his closet yes yeah is that we do we know that for a fact are you
00:21:19protecting him from himself all the time we actually don't know I think any strong emotion from me and he automatically shuts up that's been my experience I think any negative strong and yeah I mean it doesn't even have to be directed towards him I mean I've been grieving
00:21:36all summer because my two best friends after the diagnosis just totally goes to not be so when he says we have a community around us I don't feel that and that's not directed at him but just me being angry at them makes it up the point if I
00:21:58only had to say they have like feel like you're not on my side he's at all I like your site eggs what exists what effects they just want you guys to all be friends again yeah at the data I want to understand something so when she becomes more
00:22:14vocal or more intense or not even and you away here just even you what you get overwhelmed you feel like like I too much noise it struck on a blackboard it's it's you want to fix it you want to make it go away right away but you don't
00:22:31know what to do your friends what I wanted to be better I'm I wanted to %HESITATION I wanted to go away might be might not be the right word but %HESITATION I don't know what to do about it but I want there to be a solution %HESITATION ends
00:22:50to what to the whatever the the strife is whether whether it's %HESITATION why do you want it to be a solution because I feel like I always have to fix it I'll always feel like I have to like have the here is you know you do step one
00:23:06two three and four and then we're done engineering yes that's not relationships diner so do you know what's the best thing you can do when you say I want to do something not have you asked her I don't think I'm asking it depends on the thing when it
00:23:28comes to like my friends like I just want you to be mad to say like a really really sucks and I thought they were better people yeah it's not fair and can you have again then we can move on green it and let it go so if I
00:23:51give you a sequence but then be helpful thanks so much step one in the sequence we're gonna take the example of the friends one is in relation to your friends when his relation to each other I'm really upset my girlfriends go ahead I'm really upset that after everything
00:24:15I did for my friends a I'm being so cruel that I can't even wave at them when we dropped the kids off at school you know what I've done for each of them in the past in its Seoul unfair and so hurtful and so heavy really angry so
00:24:42step one you just say I hear you say more what else just bring it on I hear you that sucks you have known each step one is you have knowledge not what happened but her feelings experience off you seem really upset what else would happen what mark where
00:25:06you left with this now and be curious half I don't have the language own I hear what you're saying I hate I wish there was something I could do to make it not now no I'll have to do squat I know but I said let's create a space
00:25:27where she can on low and if you know that that is doing plenty of you don't have to do more than that you're not going to fix her relationship should have girlfriends and maybe she will and maybe she won't at this point she needs a place where she
00:25:43can safely events that is doing plenty you have created the frame and you hold it yeah I don't get more angry when you commiserate with me I get less angry because what happens is like I feel so it tapped into the bad guy and it feels so unfair
00:26:05to me I'm just reacting to like I'm not the bad guy like I why can't I say high school %HESITATION doesn't make me more mad it just makes me go thank you yes they stock that was mean but then I can let it go like it doesn't build
00:26:22up to get more and more Matt it's like okay it's right that does suck and you are my friend yes you're on you're on my side you with me yeah another loan yeah yeah they're not alone no matter what I know what I'm saying sometimes I don't know
00:26:47how to say on but you are never alone and then on occasion you bring her love a glove yes went went alone because you just said it feels good to hit okay it glows in the mail yes you and you bring it says and you say you need
00:27:11to get some steam out and then you get to work on your illness she gets to practice and a note and you go for five minutes downstairs you bang away and if you will this one had something so show her that will also make the boxing not just
00:27:29be a medical thing okay Dale and on occasion if need be is just said to him I need to bluff okay and that becomes the code word that says I'm really pissed and I need to feel that there is room here for me to be mad on occasion
00:27:48and not be afraid that you're going to shrivel up so if you would have a blow if you don't trip and I think that's really wife's minister and not do the same under the steps is first drug knowledge and then you may need to validate and just say
00:28:05if this was done to me I'd be pissed to in this was done to me it would be really upset he just validate it makes sense that you pissed after the very decision you can empathize and then do you know me too if the shoe was on the
00:28:20other side that's the feeling like that myself this very lonely saying this isn't so raw deal and then the next one is honey I'm here is not much to say and that's where the hug speaks volumes coming yeah I'd do it but yes I don't want and now
00:28:42we need to do the same thing around the convention and dismiss spending to savings in response to the side effects of the medication but the compulsion to perform did that begin does now that's been there before that's what they're for should then does another one and the same
00:29:02right right and I understand the compulsion it's related to the medicine but that's not all of it and he didn't come to me or a doctor or that people are community we've set up to say if you can't talk to me tactic this friend if you can't talk
00:29:21to a friend call the doctor can email this doctor and any time over side effects from the medication and we have set that deal up because it didn't want to be your mom I feel like this is the ultimate like sex killer in our relationship as it is
00:29:38that I am in such mom freaking out all the time we have three young kids don't sleep through the night yeah and I white but sent my check on feelings and I sort out disputes and when I feel like I am also carer taking bets then I don't
00:30:01want to have sex with it like at it I that is a really hard hat to shift movie and so most women but it away okay that feels good do you know this do you know the I don't think they do when you initiate sex and I'm like
00:30:21I'm able to just like that and that friend of mine it's because I am in mambo and mom mode is like the furthest thing from sexy mode ever like it's just like such a hard transition I have to come out of mom mode to enjoy sex otherwise I
00:30:39just and what did she do that what are the things that the biggest thing is when I feel like you are taking care of your self and coming to me from a position of strength and I don't feel like I'm your care partners then I feel like I
00:30:58can get in touch with %HESITATION right like I am a woman with a partner that feel so different to me but that mental shift is really hard to make sometimes she is shedding the light on one of the very important aspects of female designer in mambo she needs
00:31:24to be selfless she needs to be responsible to attend to the needs of others she is in the burden of care taking if he comes to her with confidence that's what she means about strength the biggest turn on confidence it means that he's not coming to her saying
00:31:45I need to but he's coming to her and saying I want to if he needs her and she's more of mom she isn't once again named care taking if he wants her then she can focus on herself she can attend to her own desire she can be self
00:32:06centered rather than selfless and so now when I don't want to be your babysitter your mom or give you discipline like I have to do with the kids I still have this haunting over me but like %HESITATION but where did our savings go and I still will don't
00:32:30really know where that money went night I don't think you've told me everything and not feeling of in security I don't really know all there is to know I don't really know all of you and maybe I better be taking care of you and looking up on you
00:32:46and checking in on you know makes you feel like I have not a teenager which is super unsexy come so this is the part where if you can come back at me we can have a conversation but if you don't come back at me I feel like I've
00:33:04just shut you down and now so for the money goes I have told you everything he really spend on games and not on point enough venom for spend on Sam in out purchases on video games now now I know it's seems like a lot just then a video
00:33:27games it's stupid but it's it's the truth and your point you says getting better not only gone you get different with me when you're watching report I can sense set but I can't always put my finger on it and then you get way more like for Abby light
00:33:51and like all girls like you touch my arm for like we like have a connection or like a draft together a look in my eye I feel things slowly changing in our dynamic and then ISIS backed that you're watching reporting but because you're so ashamed to talk to
00:34:11me about the details what I worry about is are you watching it out where her are you watching it when letting you rest and I am running on empty like to me there's a big difference between the kids are in bad and I want to go **** or
00:34:31whatever and like right you know I'm are you coming home late because you're watching points when I don't know I'm it's always in the times where kids are slain you're a slave I feel like I'm definitely not as in tune with you when I'm watching more porn I
00:34:53can I can the high ceiling for things they don't like so you know inform you never get to reject it there's never somebody who says non com didn't in both senses of the word for that matter but you don't get rejected informed you don't have to ask yourself
00:35:13if you're being competent or adequate you don't have to measure yourself up one bit and inform you don't have to wonder if she's enjoying it or not because she pretended that she is having the best time for it takes care of three very important main vulnerabilities so it's
00:35:32not for its own because I enjoy on occasion watching porn it becomes the go to for a lot of teams okay means what okay means arm I hear what you're saying hands now I'm trying to fix it means that trying to think of when we leave here mom
00:35:56what am I gonna do with that maybe the singing is just fine knowing that that's the thing and technology and just saying I'm worried I'm anxious now I'm lonely I'm restless I'm turned on I want to be turned down I feel and then fill in the blank and
00:36:27then make a list of ten other things that you can do is what do you like to build things to like to fix things yes we like to fix mechanical things five o'clock in the morning some people build beautiful things I think he's on to something here I
00:36:48think one of the reasons why I drive so much in our relationship is because sometimes you think you don't have a hobby and you feel a little lost and maybe this is a great chance for you to try and figure out what it is that brings you joy
00:37:04because we can't control how you feel physically but I think we could find stuff that you just really do enjoy they can be all alive even if you're feeling really tired and crappy we could have continued focusing on the point we had just begun but knowing that we
00:37:29were nearing the end of the session I made a different choice he's been the protagonist of the relationship for the last three years and the last thing we needed was hurt continuing to help him figuring himself out would now me joining her so that it's two women helping
00:37:48him to figure himself the thought in this moment that she needed the space and so we changed direction we were looking so forward to this year because the little one was getting bigger announced that you know it's easier to go out and get babysitters everything gets easier once
00:38:08they're out of diapers and closer to sleeping through the night you know on without you know we're going to do all these things again now the energy is not there so we have to also figure out how do you balance and then every time it feels like we
00:38:22re balance then the disease progresses and so then you have to re balance again were in this constant like trying to get her feet under her **** I'm not leads to this horrible cycle of survival survival survival rather than living and I don't want my kids to grow
00:38:44up like that you know I want them to enjoy things than are you able to enjoy it with them some days I'm he's trying but it's like bringing the spring cloud a lot but there's a difference between energy and attitude and this find it's very it's still early
00:39:12Thursday was to shock there is the what does this mean there is the how fast it is progressing there is the I'm going to continue normal then there is the new normal then there is the deal known there's a lot of things to absorb here and I don't
00:39:30know that one can avoid it it is it is what it is then starts a new face and then all phases Hama going to live with this what can I control it in a way what can a determined and what and what attitude do I want to bring
00:39:47to this attitude is different from energy very healthy people physically has to be better with a terrible attitudes and they are very sick people with an amazing attitudes David did right now you have a bit of a you know a story I am the guy who doesn't talk
00:40:10I am began a whole %HESITATION you know needs to fix things but then I am the guy who doesn't have a big repertoire of how you fix things and then and and and it just isn't it senator narrow and it's really rigid and I don't see it being
00:40:24that true editing once one gives you and says do this even if you mimicked me because the way we learn like your children is first to imitate then you identify and then you internalize so at first you may make me I say do it and then you do
00:40:39it and then at some point I should do it your way do it with your own words and then after awhile you just do something that is not at all what a suggestive but it is it has the same effect I hate the whole care partner business but
00:40:53if this does keep progressing as fast as the S. %HESITATION yeah things are going change for us what do you say the young couples who you know we're not old I didn't we send in sickness and health we meant to if we just thought would be a lot
00:41:10older %HESITATION I don't have anything revolutionary to say I think on many levels you probably know so much more than me already about this but the attitude is one in which you continue to do two things you continue to create experiences that bring joy and pleasure and fun
00:41:36even if they're small tanks beauty music you try as hard as you can two separate when you're the woman and when your dead wife and when you're a kid you know and you to at some point you may need a care giver you're gonna creates other sources of
00:42:01support that I created you're going to continue to educate yourself and you're going to look at what the us to some of the things that other people there are young people you just have to find them and what it did the Yukon just go by the doctors I
00:42:19have to go by the people who have experienced it and have tried takes it doesn't mean that's the writing for you but it gives you ideas from and you're gonna start to create a network of people that you've never met that live in various parts of the world
00:42:33you're going to use all your nice little tech skills for something else than to mold on porn okay in moments like dis I'd to have to confront my own helplessness there is nothing I can do towards the progressive ravaging effects of his Parkinson's but I always think about
00:43:07the book man's search for meaning by Victor Frankel which he wrote about his experience in the **** concentration camps when he said that everything can be taken from a man but one thing the last of the human freedoms to choose one's attitude in any given set of circumstances
00:43:27to choose one's own way and I want to give this man that freedom that he can no that he didn't choose his illness far from but he can choose how he will leave with his in this Esther Perales the author of meeting in captivity unlocking a Roddick intelligence
00:44:05and her new book the state of affairs rethinking infidelity both are available on audible the more episodes of where should we begin good audible dot com slash S. there and if you're interested in being a part of the series or to sign up for us there's newsletter go
00:44:22to Esther corral dot com where should we begin as an audible original production produced by living in that and eva walked over for Houston sound designed by Paul Schneider recorded binary go Connie and one Marcos Percy executive producers are esoteric around and me Jesse Baker Eric Newsome is
00:44:43our big boss and we couldn't do this without Lindsey recounts ski Jim Cullen and most of all the couples who share their stories with us we would also like to thank Andy gaze Vanessa Harris protein that really see many stand in Darwin Tomlinson Sarah Moscow with Rosa %HESITATION
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