Caring for Caregivers With Lauren Eisleben

For our listeners , they'll remember that once again , it's April and that means that it's National Healthcare Directive Month , which you know . Kudos to you , denise . Before I had you in my life , I did not know that April was National Healthcare Directive Month , but now , now I do .

And for our listeners , they might recall that we tackled some really tough end of life discussions last year and that was in our inaugural season of what to know before you go series , and we appreciate all the feedback that we got from our listeners telling us that that series prompted them to understand more about end of life and those alternatives .

Also that people had their end of life wishes , alternatives . Also , that people had their end of life wishes , sort of discussions with their loved ones . Some people met with their physicians and talked about advanced directives .

Some of us filled those out right , we printed them off on the internet , right , and so all of that is a rewarding life change and we love knowing that the podcast really did and does make a difference in the lives of the people that listen .

You know it's not a comfortable time , are all sitting around the Thanksgiving table and I'd like to talk about end of life wishes . You know it's not a comfortable time and yet , gosh . What we know is that it saves so much heartache if the time comes that somebody has to make sure they're honoring their loved one's wishes .

So I'm very grateful that people heard us and did those tough things themselves heard us and did those tough things themselves .

Last week we met with Dr Jamie Myers to discuss all things hospice and if you missed that episode , we strongly encourage you to check that out , because he has a wealth of information about end-of-life care , the difference between palliative care and hospice , and , whether you're young or young at heart , knowing about those issues may be invaluable in the future when

someone you love needs those kind of services .

Not only do we love having her on as one of our guests and we love talking to her , but she's one of our favorites because the listeners love her as well and she's going to join us today to discuss all things caregiving .

So , as you may recall , lauren is a licensed professional counselor in Columbia Missouri where she counsels individuals , couples , families and groups .

Lauren is certified in emotional focus therapy and she is a supervisor in training for emotionally focused therapists , which is awesome because it's incredible to watch her share her passion and her knowledge and to help expand the breadth of therapists that are available .

So , for all those reasons , and probably hundreds more that I didn't say welcome to the show , lauren .

be honest .

So , just working alongside folks who are passionate about maintaining relationships , rather than cutting off relationships , which I think a lot of times what our society and our culture would advise is just to cut people off if things are difficult and whenever I ask people that , you know , that's usually the one of the first questions I ask them well , do you , do

you want to end this relationship ? And they're like , they look at me , like you know , they're shocked and they're like well , no , like that's why I'm coming to you and I say , oh great , Then we have a great place to start .

You know , my goal in helping caregivers is to help them maintain a really long , lasting , fulfilling relationship with anybody that they want to be in contact with .

And if you're in a family situation with somebody or a close friendship or something like that , chances are you're going to be with them for a long time and I want to help figure out how we can maintain that in a way that is life-giving for everybody involved .

Yeah , and I want to help figure out how we can maintain that in a way that is life-giving for everybody involved .

And I was thinking to myself well , one of the best things that we could do is we could get a little group together and we could kind of have a group speak about this . And that's where the friends and family coaching group was birthed from . It was from the family members calling and saying what do I do for me ?

And at the time , you know , when I started thinking about this , I was looking around for other resources , maybe other groups or other ways of family members getting connected , and really the only two that I came across were Al-Anon , which is , you know , the sister to Alcoholics Anonymous , which works with family members , and also NAMI , and for NAMI has a friends

and family group as well . Other than that , there weren't any resources for friends and family members . So what I did is I just kind of looked around for some , some literature and some research .

That said , you know what has been evidence-based and supported for helping caregivers and I just put some resources together and wrote a little eight-week curriculum and kind of launched the Friends and Family Coaching Group and I was like , yeah , we'll see how this goes . That was kind of my , that's kind of my attitude toward it .

One of the things that I loved so much about some of those first groups were and I find this time after time every single group . These people are desperate and hungry for help and they will . They will do basically whatever they need to do to improve their own quality of life and to continue helping the person that they're walking alongside .

And I tell them over and over again in every group I'm like you are the reason I keep coming back , because their energy to make changes and to really work with themselves is so contagious . So it's it's easy for me to go into a group like this and say what do we want to do today ? You know where are we stuck ? What are you struggling with ?

What was the week like ? And so that was . That was kind of how I was , how it was born . And then what happened on the flip side was all those friends and family members started asking me where their loved one could get help . And so I was like , oh yeah , we got to think about that . You know , we got to think about them too .

And that's where my ideas and thoughts and our practice started talking about the intensive outpatient program , because most of the things that we were talking about really did deem more care than just one hour a week .

And the family , friends and family group has now become an integral part of the intensive outpatient program , and so most of the time we're working with people in the intensive and we're also working with our family members , which , in my mind and my experience , is really the only way of providing good care , because these folks they're going to have us for a

certain amount of time , but they're going to have these relationships forever , and so I'll provide support on both sides . Then the chance that somebody can continue in their journey and meeting their goals is going to be a lot greater .

Most of it is group work , so we have eight different groups that meet over a three-day period , three hours a day , and so it's for folks who are either wanting to give more attention to some things than one hour a week or are coming as a step down out of maybe an inpatient treatment facility or a residential treatment facility and wanting to solidify some of

the things that they've learned before . They , you know , go down to one hour of counseling a week . So anybody who comes into the intensive will do they can . It's it's really client driven a lot . So it's available for up to 12 weeks . Everybody has their own unique stay and what they're willing to work on , what they want to do .

The friends and family coaching group is included at no extra charge . So up to two family members per person can come for eight weeks and run alongside them , and then individual therapy and or couples therapy is also included in that rate for the intensive . So we're allowing folks to really pick and choose how much they want to get involved right away .

Some people say nine hours a week is a lot , we'll just do that . But halfway through people usually pick up individual therapy or couples therapy and then we try to bring the families in really close to the beginning so that they can get , you know , eight weeks of support .

That's really cool . Well , it reminds me of as a as a caregiver or in general . You can't pour from an empty cup . So what I hear you saying is like we decided to partner with the caregivers so they weren't trying to do that . So , along those veins , do you think there is such thing as a typical caregiver ?

Anybody who who really enjoys helping , serving somebody else and and feeling the , the appreciation from that , is kind of going to do that across the board . So you know , it's not necessarily a pick and choose thing . It's usually like kind of scanning the crowd , being like who could I , who could I serve today ? You know , that's one thing .

The other is and this can be hard but hard to recognize in the person , but sometimes it is folks who did not get cared for themselves .

And when you know , when we're young and one of our , our basic needs is being comforted and being cared for , if that , if that need isn't met , our , our brain and our body doesn't really know what to do with that , and so it will start searching to figure out how to get that need met .

And a lot of times that need gets met by giving care to other people , and so that's not a negative at all .

It's just something to notice that you know usually there can be a common thread with with people who have either always felt really comfortable giving to others or were not given to themselves and kind of picked that up as a way of dealing with with their own pain makes them really good at caregiving for others as well I like what you said makes them really

good at caregiving for others .

And I think what you're talking about , too , is if someone isn't , you know , necessarily empathetic or has the patience to deal with caregiving . That's a huge part of the time , you know , with caregiving , that's a huge part of the time , you know .

Time , you know , I find that interesting . It seems like caregivers always find time . I'm not sure where they find it from , but they tend to always find a lot of time .

So on the flip side , they can get really tired and sometimes what can happen is they burn out really fast and then have to kind of quit everything Once again , that was something that I've dealt with from time to time . So that can be difficult . And then , as far as the not empathy , I will say that I don't necessarily consider that a characteristic .

I think what that comes from maybe what you're seeing is somebody who actually empathizes so much that they feel overwhelmed by the burden , and what that can look like is kind of holding somebody else at arm's length , not necessarily from a not caring place , but from a caring so much that I don't even know what to do with this , and that can be hard to step

into a caregiving role if everything feels very intense and urgent all the time .

Well , hopefully by now we've defined , you know you are a caregiver , but what are the stressors that people might identify with ?

And , and regardless of how often or not often that comes up , I have just learned to sense that in people and it really helps to put that out there at the beginning of working with somebody and walking alongside somebody , because it doesn't intensify the feeling , it actually validates the feeling , because really , at the end of the day , what we're afraid of when

we see somebody struggling is are they going to make it ? You know nobody wants to say that out loud . It seems really , you know , kind of morbid or something , but really the question is are they going to make it ?

And then I would say , second to that is you know , the stressors are the day-to-day basic necessities , which just gets overlooked time and time again . You know , I , we spend a lot of time talking about sleeping and eating and moving and your job . And what are you doing today , what are you going to do tomorrow ?

You know all those kinds of day-to-day things and when , when we're watching somebody struggle with some really serious things whether it be behaviors or or their mood or illnesses , chronic illnesses we're looking at them going . How are they going to do tomorrow ? What am I ? What am I going to need to do to step in to help them with tomorrow ?

What am I going to need to do ? That was a big that's what they translate .

Those are the things that you know , and anywhere in between is the continuum . Yeah .

I always try and let people know that you can take FMLA by the hour . So that's wonderful to use 12 weeks in a year's time is that you can even take it in increments of an hour . But again , financially , the financial hardship of do you take off work ? How long do I need to be off work ?

How are we paying for their medications and all the supplies that they need ? Those are huge parts of caregiving that really impact that process .

Right , so it would make a ton of sense for us to look at you know , our friend , and say , oh yeah , you should go ahead and take FMLA and work on all that stuff , but , like , I need to continue to go to work every day and take care of my own family and take care of you .

And you know and we just dismiss very quickly the toll that it takes on us mentally , emotionally , financially , physically , in walking alongside somebody you know , because we truly love them and care for them .

And , you know , rarely do I hear somebody say I'm going to take , I'm going to take leave so that I can rest up from , you know , talking to this person or helping this person , or you know , whatever I mean .

That hardly ever comes up and I think , just in general , it would be helpful for us as a community to tell these folks hey , what you're doing is actually really hard work too . You know what we're engaging in with people is deserving of support .

They're not going through their checkups , they're not eating well , they're not exercising , they're not sleeping well , and that's what sometimes really contributes to that One person dies and pretty soon the next one's gone . Yeah .

And she's like well , I actually have this lump , you know , and and uh , lo and behold , it was really bad news for her on top of a really trying year . So it's hard though it's hard to say I'm going to take time to to do those things for myself .

And I know , uh , last year I had an asthma exacerbation on the trail and you know , if you've heard me talk about it , I was a little dramatic . I said I thought I was going to die .

But I said tell that story because I quit treating my asthma during Matthew's bone marrow transplant , cause it like who cares about my asthma right , like I got bigger fish to fry than my asthma .

And so I just tell those little examples , because I think it's so easy to put our needs aside whenever you don't even have the energy for your own needs sometimes , right .

needs . Sometimes , right , yeah , usually , you know , I ask folks if you could take care of yourself in a way that you haven't recently or , you know , do something for yourself , because so much of our caregiving role is thinking about and executing for somebody else .

So , like , what is one thing and it's always I tell you what same answer almost every time it's well , I would just like to go away for the weekend . Yeah , you know , and it's I . I can .

I laugh out loud every time I hear it , because one , it shows up in every single group , no matter who the people are , there's always somebody who wants to go away for the weekend .

And it's always so telling to me because one , it doesn't seem like a huge ask , right , and I mean even like , could I go to somewhere else in the state for a weekend or something .

But when we get into it , all the hurdles and barriers for somebody who's caring for somebody to go away for the weekend feels insurmountable , and you know , at that point we start talking about what would it be like for you if you were able to do that and what would it take , and you know , and even just kind of start dreaming a little bit about .

You know what that could be like , because usually caregivers don't get asked what they want to do . You know or where they go , or you know how they want their life to look , because they're so embedded in their role and they care so much , and a lot of us will feel selfish if we do something for ourselves when we have somebody that's really struggling .

So , unfortunately , or fortunately in my world , what I tell people is you are going to feel selfish , and so there are lots of things that we can do while we're feeling selfish at the same time , and if somebody is in a pattern of not doing anything for themselves , I guarantee you they're going to feel selfish , and if we wait for that feeling to go away ,

we'll probably not be ever going away for a weekend . And so what I say is how can you tolerate the feeling of feeling selfish a little bit more and go away for the weekend ? The other thing that I say is what's the detriment to not going away for the weekend ? You know so .

There's a lot of sacrifices that we make as caregivers that really impact our own quality of life , and the longer that goes on , the snowball effect just comes into play . And if we don't ever do those things that we'd like to do , chances are the relationship with the person is going to suffer , and nobody wants that to happen .

Going to suffer , and nobody wants that to happen .

So you know , we want to be able to , to have the energy to show up in the way that we want to show up , and if , if we neglect ourself , then we probably won't be able to show up like that , and so I don't use that as a shaming tactic , but more as a reality , kind of this is what's going to happen .

So could we maybe make that more of a priority ? You know , or could you know , I , I will do a lot of like slicing it thinner for people . So , okay , so you don't want to go away for a weekend , what could you do for a couple hours ?

You know that you'd like to do , and then maybe we can work up to a half a day , and then maybe we can work up to a whole day . You know , and that and and that kind of thing .

And that can help a lot is to say , okay , this week , you know , could you go see a movie with a friend and then just go right back home , you know , cause you know you're going to feel really bad and just work with what God , instead of trying to fix the problem of how they're going to feel before they do the thing .

And then your your second question as far as how do we you and me come alongside people who , alongside people who are wanting to do these things for themselves ? So one thing that is hard is most of the time , if we ask somebody who's in this role to go out to dinner , they're probably going to say no 90% of the time . And so what do we do ?

We tend to stop asking , and that's just a norm kind of thing , that's just a social cue that we get . If somebody says no enough , you just stop asking .

And I just want to say that , if you want to keep asking , please do , because chances are at some point somebody's going to want to say yes , because chances are at some point somebody is going to want to say yes . So that would be one thing .

The second thing would be this is going to get kind of funny , but you know , for whatever reason in our society , we like to always bring people food Right . So it's like can I bring you a meal ?

And I remember I talked to somebody about this one time and they said if one more person asked me if they can bring me a meal , I can actually make my own food . And so I was like that's really good . I said what would you like them to suggest or to offer ? And then they just rattled off a list of things that this person would have never known .

Right that , no , we don't know what people like or what they need , and so one of the best questions you can ask , caregiver , is is there anything you need ?

Is there anything you want that I might be able to help you with , instead of kind of throwing out like hey , can I bring you a meal on Thursday night , or can I buy you a gift card for this , or you know I mean we could come up with lots of things Just say , hey , is there anything you need ?

And when somebody says no , just say , just let me know if there is , because a lot of times , here's the deal caregivers don't know what they need .

Just let me know if you think of anything , then we , you know , we take the pressure off , because the last thing we want is to add more pressure to a caregiver by having them tell us what they need .

And so I would just you know that seems like a kind of trait or you know , common sense , but you would be surprised at how many people don't really know or have a totally different something that they would really like , and if somebody just asked them , they'd be able to tell them well , and I think you could also say I'll check again with you next week and

just , you know , kind of make it a pattern that once a week you call and say , hey , I'm going to costco , need anything , hey , I'm going to the grocery store , target , whatever .

But five days , and more times times than not , while their loved one is in the hospital on respite care , they are sitting in the chair next to them .

Yeah , yeah , like no , we want you to get out , and but you know it's ingrained , I think , in a lot of people that they're they're they're the only ones that can really do a good job of taking care of their loved one .

We're also told that by the loved one , like you are the person that I'm living for , or you are the person that I can count on , or you give the best advice , and all that . All of that is true . All of that is true .

However , it doesn't really give a lot of service to the loved one if we don't ever allow them the chance to find somebody else or to make some decisions on their own , or to let somebody else care for them .

And so there's a twofold thing that I work with families on is , as you are taking care of yourself as a caregiver , you're also giving the opportunity for your loved one to take some responsibility and have some autonomy in their own decision-making , which is actually incredibly empowering for them .

They're very scared of it for a long time because they're used to being taken care of , but what actually ends up happening is they feel so proud of themselves for being able to do that and you also get a little bit of a break at the same time .

So while we don't make you know one causal or the goal of another , those two things do work parallel with each other and it can be a real win for everybody involved .

Or what we see is the caregivers burn out and become ill themselves .

I think most of the people I worked with , I would say , also have a chronic illness in a different way . You know , and it's hard , it's very hard for us on the outside to see mental illness challenges and struggles as chronic because for some reason we have a judgment on it that it's a choice , we make a moral statement about it .

There's lots of different ways to think about it and all of that could be true . I'm not arguing whether or not that's true .

What I'm saying is I will tell you that if you're in relationship with somebody who really struggles with mental illness , risky behaviors , substance use , eating disorder , self-injury , things like that you're going to be in this for a while and I tell the family members that you know , on the first day of group I'm like we're we're in this for the long haul and

so whatever we need to do to figure out how to get you through the long haul . There's never a two ending , there's never a destination . But how can we make this manageable ? You know to where you're living your own life alongside caring for somebody else .

It's hard to wrap your head around something that isn't necessarily driven from a physical illness spot , but that's , that's the power of stigma in our world and who I work with . Yeah , it's pretty chronic and it ebbs and flows and comes in waves and you know sometimes it's worse than others .

But just to really normalize that for people and say that it doesn't , it doesn't need to be solely physical , that that it's okay If this thing doesn't get fixed in 12 weeks or two years , or it's okay if something has seemingly been taken care of for the last decade and all of a sudden it's turned on its head again , you know there's just lots of , lots of

ways to work with this and we want to help people be able to have the longevity to do that , even if it's something that seems out of the norm .

So you said something really important about the moral judgment that people place on mental illness and I think that we could really do a service there if we could kind of unpack that for a second , because you have a patient with some mental health issue , right , and then you bring a care , so they're already that person's already faced the stigma that comes with

that right , so they have their own stigma . And then you have a caregiver who's trying to to care for that person and there's a stigma for them as they care for them . Like you know , it's not no one . No one was anything but so lovely and encouraging and helpful to me because I was caring for my child who had cancer .

But I think it can be very different for someone who's caring for their child who has mental illness , or their spouse who has mental illness . So how can we just , in the time we have together , what could you say to kind of help people reframe that ?

Because I think many of us have either a conscious or an unconscious bias there that is harmful for caregivers .

you . When you , you know , when you have a friend who we'll just take a friend or a family member , it doesn't matter a close , a close person to you who's struggling with something , what's your typical first kind of gut response to what they should do ? Get help . Okay , what else Somebody needs to get help for ?

When I talk about moral judgment , it's the responsibility that they put on the person who's struggling to get things together . Get it together , you know . And if you don't get it together , then yeah , like you're going to lose relationships and you're gonna lose your job and all that kind of stuff .

And the longer we hang around with people , the more people look at us like we might have a problem , like aren't we seeing this , you know ? And and that's what I mean by moral judgment is people get really uncomfortable when things don't change , yeah , when situations don't get better uncomfortable when things don't change .

Yeah , when situations don't get better , absolutely . When people don't , you know , kind of kind of shake their world upside down and make it make a big adjustment , we get real kind of antsy with that , just as creatures going like , ah , this is uncomfortable , it's not getting better , what if it never gets better ?

And sometimes we'll say to ourself I'm not going to be able to stay friends with this person , it's going to be too hard for me . Right , that's totally normal . It is OK to feel that , it's OK to say that , and actually the more that we say it and talk about it , the more we can do something about it .

So , you know , I would say that to kind of step back and say this must be so hard for you , what's hard about it ?

You know , even though that's not what we're trying to do , so I would say , even changing that phrase to tell me about this what's life like in your world , how does this go for you ? You know , when you , when you , how do you deal with this ?

It seems like it would be really hard and just kind of , you know , coming coming from a place of curiosity instead of judgment , a lot Like if we could just get curious about what's going on here . Instead of assigning a fix or a cure or an end or a goal or , you know , fill in the blank , we could just say I wonder what this would be like for you .

You know , usually , when my friends and families get in the room the very first week of the eight week series of this group , we talk about what do they want treatment to be , because I tell you what every person in their life has decided , what they think their loved one should do as far as treatment , and usually it's not something that the person is going to

do . We'll just say that . And so I'm like , guess what you get to decide what ? What do you think that ? What do you think is possible ?

You know , and it , and it's so empowering for them to say , oh , I could actually work on encouraging that , because I know they might die into it , but but we don't need to go lock up everybody until they get fixed and then return them back to the

world . You know , and I think that's the moral judgment that a lot of times we place on folks that are struggling because it can feel so hard to watch yeah well , I just think also , I always feel ill-equipped , sure ill-equipped .

So well , and let's just , let's just normalize that for a second and say , like , how would we know how to be equipped for some of this stuff ? I , I was thinking to myself .

I was like I , I , I think the longer I'm I'm in my , the longer I'm in this role , the less equipped I feel , because I'm like , well , you know , uh , I , that's not hitting , that's not landing . You know , I don't know . And sometimes I think that is the best way to show up for somebody is to say I have no idea what to do here .

Can , can we just like figure this out together , like what you know , how should we do this ? Um , and that's that's kind of the approach I take with these families and also with the loved ones who are struggling is , who am I to say , like , what we're going to do next ? I don't know what we're going to do . I'm not living that life .

I think the more we get into feeling like we have to have some kind of tool or some kind of answer , the less close we get with people , you know , the further away we get from them and their experience . And so it's totally okay and really normal to be ill-equipped , because most of the stuff we there's no equipping for it . Yeah , right .

And I mean I brought up mid-mo and she said there isn't a mid-mo anymore . I mean the desperation that that parent's feeling in that situation and there were no resources available for her and it's so heartbreaking to know that what she has done and been through and the end result was tragic .

And , you know , the more to kind of work with the fact that that could be a reality , the more we're going to be able to apply just our own self to the situation in the present moment . And it it you're right , denise , it is often incredibly tragic . You know .

It's like we thought everything was going to go okay and then all of a sudden , you know , or we thought it was going to be okay , and here we are , 25 years later and it's never been okay . Right , you know what is that like .

And it's , you know , for us caregivers to be able to show up for each other in those ways and say , yeah , you did everything you possibly could . This is just sometimes how it's going to be , what it's going to look like , and there is no cure for that .

I know of several people that were patients at Missouri Cancer who had loved ones who had mental health illness and they had cared for them for many , many years and continue to care for them and go through all the things that they had been through and they had cancer Right , Yep , and not to say that the strain of having someone in your family or loved one

that has mental health , but it is like you said , it's 25 years , 20 years , all of your , until that person is no longer here and either you know , follow medical protocols and do well for a while , but there's always that waiting for the other shoe to drop . That's extremely stressful for loved ones , absolutely .

And you know , I would say , even though , and even among communities that don't have a lot of resources , to keep asking for help in any way you can , you know , to really make that a priority for yourself , anything that you're able to give yourself by way of support you're going to be able to give to your loved one .

And so to continually reach out and say , hey , like I don't feel great in this way , or I don't know about this , or you know , just keep asking and looking for resources , or you know , contact one of us and we can help find and connect you with resources that we know of or that we know somebody who knows something .

But I would say that it is a priority and you are worth it to do that , because the role that you're playing is often thankless and very long , and so to be able to get support and advice and you know what do I do next is very well worth your time and energy .

Oftentimes , if you're caring for someone who has a terminal illness , and usually people can come alongside and hang in there with you for six weeks or two months or whatever but these mental health issues , chronic illnesses , where it's forever , that person is really on a journey that can be so lonely and isolating .

So giving them all this and your support groups gosh , such a wonderful resource for them . I cannot thank you enough for that , having worked with people that were dealing with all of that and doing something .

I think , as I understood it correctly , you're meeting with the patient , the person identified as the patient , but then also the caregivers , and the Alzheimer's Association started that years and years and years ago because they couldn't leave their loved one to come to a support group .

So they started having support groups and programs for the person who had the diagnosis , so that that person could be gone for an hour to get the support that they needed ? Yep , absolutely . Yeah , so keep doing what you're doing . Great work Will do , will do All right . Thank you so much , lauren .

Or if you have a topic you'd like us to discuss on the podcast , use that same email , theproblemwithperfect at gmailcom , to send us your ideas or feedback .

And while you're there , make sure you've subscribed to the podcast so you never miss an episode , as always a special shout out to our editor , jordan Overkamp , for making us sparkle . And remember , there's always enough grace for you today , so be sure to give it to yourself .