Living with a Rare Disease: The Importance of Well-Being - Episode 2: Resources for Caregivers

  hi everyone and thank you so much for joining us today on care connections a podcast series where we have real talk on rare conditions sanofi genzyme has been committed to supporting the rare disease community for over 35 years on our show we tend to focus on the people who are living with the health condition today we're going to focus on those that are a critical part of a person's journey with the health condition their caregivers joining us again for today's episode is dr kendra buraker we spoke with her in our last episode focusing on the patient's perspective of living well with a rare disease now we'll be talking with her about the mental health side of dealing with the loved one's diagnosis and being a long-term caregiver dr buraker is an expert pediatric neuropsychologist who has worked for over 20 years of patients and families affected by rare medical disorders to help them learn and accept their losses and limitations and also to help them transform their experiences into something livable and bearable to help them focus not on what was but the possibilities 

 

that can still be so we are so excited to start this episode let's get started welcome dr buraker we're so happy to have you here with us well welcome me thank you very much so today we are going to be focusing on the care circle can you start by talking about the common emotional or psychological challenges that members of the care circle may face when their loved one is diagnosed with a lysosomal storage disease this is a very unique experience because members of the care circle can feel first and foremost isolated and not well understood which leads to anger and resentment and irritability and they may experience some depression and anxiety for good reason because they don't know what's happening caregivers they become more distressed and anxious and depressed if they're unable to participate in things that they typically do so valued activities interests going out with friends and the second thing that members of the care circles feel is really unprepared because when you think about it when you get a diagnosis and the doctor or your team is sitting in front of you you're the one that gets the information and so they have to either go online and figure it out and they struggle with accessing resources that they don't know even exist which causes really a lot of panic anxiety and burnout in our last episode you talked about how patients often go through a grieving process when diagnosed do members of the care circle also go through that similar grieving process and what does that look like they certainly do go through the same grieving process because like i said before it's a end or it's a change it's a metamorphosis into something that they didn't have in their mind as having and so they had to really switch gears very quickly not only did they have to switch gears they experience a little bit different emotions in that they have to be the caregiver they have to be the cheerleader at the same time they juggle that they have a sense of sadness and emptiness and guilt because they don't have it they have anxiety am i going to do this right what's going to happen and then possibly some anger and do you think that different family members are impacted in different ways for instance whether it's a sibling or a spouse oh yes everybody reacts differently based on their experiences they've had all their life up until that point and so it's your perception of how you view the world how you view other people so if it's a sibling siblings are affected and i've seen this in some of the lysosomal storage diseases where three of the siblings have it one does not and so that sibling feels very guilty or they sometimes quit coming around because they don't know how to handle the ones who were diagnosed if younger they feel loss isolation another thing is they also may over identify and worry about getting the condition and i want to say this to the listeners who have small children the small children naturally eavesdrop and so they take on the worry and the anxiety and the mood of the parent who is discussing the chronic condition also siblings might feel pressure to over achieve siblings might say i can't even complain about a headache or hangnail because you have this chronic condition they may feel resentment if special treatments giving to someone and they don't have that same special treatment or on the flip side i've seen this a lot is when let's say that the one that has the condition takes up so much time and then one that doesn't has a lot of cancellations in their life and so if it interrupts the general continuity of life then resentment and anger kind of bubble up but on the flip side and this is really exciting they can feel really empowered and they can feel very wise about it and then they start learning about the disease or condition and they become very very involved and many of the siblings actually go on to be nurses or doctors or in the care field now that's very true and we find that all the time a lot of times when we speak to siblings they have wanted to continue on helping people in that capacity very interesting so i also want to talk about parents so when we think about a child's caregiver we often think of a parent and i can imagine that biological parents may feel a degree of guilt having potentially been the one to pass on the disease so how do parents tend to respond to a child's diagnosis of a lysosomal storage disease this is on a spectrum i've seen those who do not respond well and then i've seen those who work through it but there are several reactions to finding out your child has a genetic condition which you don't have any of the symptoms and so you have a child can you imagine you know carrying a child for nine months giving birth to the child all of a sudden the doctor says they have this genetic condition again you have to go through the grieving process but i call it the shame blame worry it has a certain term it's called genetic guilt process where parents feel guilty and have a lot on their plates they feel guilty if they do something fun with their friends they feel guilty if they don't they have to learn so many things it's a steep learning curve so the parents actually have to learn all the medical terms they have to learn the insurance terms they have to learn the educational terms they have to learn everything on how to navigate hospital systems different doctor personalities at the same time they're keeping the rest of the family going they're feeling grief and guilt and fear and confusion but the only thing that can lessen that guilt is to know you did nothing wrong because unfounded guilt it'll drain you it'll erode the confidence required for you to make wise decisions it becomes decision fatigue it causes parents to focus on the past rather than really going into the future and advocating and i i know this from a personal experience i lost my son in 2007 and i can't stress enough for parents to take care of themselves and to lessen the guilt that you did nothing nothing wrong that only comes with you know some talking about it putting words to it self-care and somehow replacing that guilt within purpose yeah and that comes back a lot to what you said in the first episode of finding that meaning and purpose within the disease another common type of caregiver is a partner or spouse so when the caregiver is a partner how do you think that impacts the relationship and do you have any tips to maintain a healthy relationship i have so much to say about this one because i think it goes both directions so the one who has the chronic condition feels very very guilty and like they're somehow holding back with what they want their spouse to have and couples are most satisfied when there's a give and take and it's equitable so when somebody has a chronic condition partners seem to accept some inequity if the patient has a lot of physical limitations let's say and they can't do things with the other one and then the other one takes on guilt so it's just this it's like a catch-22 it's like going in a revolving door in and out in and out and i'm going to tell you something when i watched patients come into the clinic i would just kind of stand back and i would guess even before knowing what the condition is if it's an excellent condition or if it's a autosomal recessive because a lot of times when the genetic condition is the fault of one of the parents then a lot of blame and a lot of negativity is put on that person if it's autosomal recessive and both of them carry the genetic variant they don't have that and they sit together more we have to come you know full circle talk about it communicate in an honest safe problem-solving way that can promote deep respect for validating each partner's needs so you mentioned earlier that caregivers and other members of the care circle can experience anxiety we also know that they may experience depression so what does that look like and what are the symptoms for listeners who may not know this is very critical to know this i was giving a talk a couple of years ago and i was talking about actually depression and anxiety and a woman in the audience raised her hand and it was just the most profound question to me because i made the assumption that people should know what it feels like and she said what does it feel like to be depressed because maybe i am and i don't know it and i think that as a society we often use terms but we don't explain what we mean depression can have somatic components such as fatigue just terrible fatigue like being in slow motion like being under the water and treading the water and can't come up out of the water either you overeat or under eat and you become hyper vigilant this has been experienced in watching patiences where they watch everything very closely they ask questions all the time but that's to be expected but when it gets to the point where it's controlling their thoughts that's where people need help there's a loss of interest so they might have liked to done things before and they don't anymore they don't have any feelings one way or the other so they become pretty indifferent but they feel helpless like nothing's going to help the situation and then they become hopeless they have sleep issues like over sleep under sleep feelings of worthlessness guilt or you know it's really amazing they could do really reckless behavior things that they've never done before i'll give you a quick example of this when parents come in i say that you know you're going to go through a process and sometimes if you don't understand that process you could go through a period where you do maybe things you didn't do before like by a harley davidson or you get five to ten tattoos or do something you typically wouldn't do and i had this guy come in and he pulled up his sleeve and he goes oh no look i said hey okay so we got that out of the way and he said yeah but that's the type of thing that he would never have typically done before but that's what i mean and you know it's a way to control the pain you're feeling at the time is to do something that's out of ordinary it's a way of controlling it you mentioned the signs of depression in terms of anxiety symptoms is that more that hyper vigilance that you were describing yes they become hyper vigilant they don't know when to settle down so they're always kind of ramped up they're really quick to temper they never seem to be satisfied with an activity or you know no matter what they do it just doesn't fulfill them but they're always like waiting for the other shoe to drop and anticipating that so anxiety is feeling really ramped up can't calm your thoughts down especially when you go to sleep got it and then my final question on this is can anxiety and depression exist at the same time or do you typically go through a period of depression and then have more moments of anxiety you can have both and so the real estate in the brain kind of shows that you can have both usually you become angry and the anger becomes depression and then depression becomes anxiety but people sometimes are just naturally born to be more of an anxious type person so there's some sort of biological under tones to that as well and neurotransmitters go together as well and then how you have learned to cope and what has worked for you but you can have both or you can have one but it's very good to figure that out through professionals so that you can get the focused therapy that you need that will help the most so clearly a diagnosis within the family unit or with someone close to you can take an emotional toll and they may be focused on that person rather than themselves so what advice would you give to members of the care circle to make sure that they take care of themselves and their well-being while also taking care of their family member elise i'm so happy you asked this because you know that a lot of focus goes on just the care of the person has the chronic condition and if i could split up the screen it would be okay we're gonna concentrate on the one who has the chronic condition we're gonna focus on the one that is care taking but i think we often ignore that person and then they end up having a lot of stomach issues they have sometimes nightmare they it turns into post-traumatic stress disorder they become very isolated so it's so critical it's going to be harder to do than things that i say because there's so many so many times in hours and a day and minutes in an hour but you have to eat properly get enough rest and exercise even if it's for a few minutes now movement is what i like to call it take some time and don't feel guilty please do activities that you enjoy or you've always wanted to do seek non-judgmental support and what i mean by that is sometimes you can tell a friend how you're feeling and they can come right back and say oh i shouldn't be feeling that way seek support that is very free of all judgment and put your feelings on paper good self-care i can't say this enough is the foundation for everything else you do nothing else happens if you do not take care of yourself it's not okay to do that it makes you a whole thinking feeling person who who is doing what you need to do to take care of yourself embrace it because you're no good you're no good to anyone if you do not take care of yourself i've had people who are taking care of people say i go to the dentist just to get away and that's not what i'm talking about i'm talking about doing things that you really really enjoy doing you know get back to the hobbies get back to something and just carve out a little bit of time for yourself yeah that's so true and by taking care of yourself and making sure that your needs are being met you have more space to potentially provide care for your loved one as well so how can members of the care circle do both as you're suggesting provide support for their loved one and for themselves you have to set time during the day you have to understand what your needs are because sometimes your needs get buried and they get very so deeply you don't even know what you like and you become so tired of making decisions people in general hate to ask other people for help and other people will say oh let me know what i can do for you and that really sometimes angers those people who are caretakers or caregivers because you know good intentions mean nothing and they find what angers them is the inconsistency of the help they just want consistent help so make sure that you tell them exactly with clarity what you need them to do you know they could also find resources if you can't find resources say hey here's what i want you to do i want you to look this up i want you to look you know activities in the community that i could do you can do x y and z i need a pound of sugar could you put it on my doorstep i don't have time to talk but caregivers have to tell what they what they want move in the direction of your values and clarity will come in helping you decide what's useful because the this is where you want to pour your energy into excellent yeah i like your point about being specific and telling others how they can help you i think that's really helpful even though some people might find it challenging to have those conversations so do you have any recommendations for ensuring open and safe communication between caregivers and people who can provide them support and their loved ones yet you need to discuss it so i was giving a talk and it was to caregivers and somebody raised their hand and said i'm a care receiver and they're not doing it right and sometimes we always think as caregivers we're doing everything right but if you look at really what they want it's not in line we have a misconception about what appropriate care should be given but again it goes back to that communication and don't be fearful of letting your needs known and if somebody needs help you know gently say to them i've noticed that you're really anxious or depressed and talk to them about it knowing the patient's needs is very very critical knowing how they feel letting them talk in an open manner so that we understand them both people need to do that you remind me of a another time you were speaking to a couple and the wife had a rare genetic disease and her husband assumed that what she wanted was him to fix everything and what she really wanted was just for him to listen and also so true and so um so they talked about that challenge they experienced at the beginning where they both were trying to help and work together but what they both needed was different than what they were receiving oh you can just said it more clearly intuitively men like to fix things also when they know they can't fix something that also interrupts their equilibrium and so they have to get through that that they cannot fix all the time but communication you know to become an engaged listener i always say communication is less about talking i'm more about listening i mean listen without preconceived ideas of what you're going to say after the person gets done talking and then really look at them their nonverbal their facial expressions and posture and how they're breathing how they're putting their arms and these are just some communication techniques that i recommend and everybody i want to tell you i can't scream this enough is put your cell phones down because there's nothing more irritating than pouring your heart out and then somebody checking their emails it's like you're kidding me avoid all distractions close the curtains turn off the tv take everything out of your pockets just get rid of everything put your mind at ease and just listen with your heart no that's so true and that's true of not only these types of conversations but really any conversation in general so how does communication differ based on the age or different people so how does that context change that type of communication yeah again we're talking about the context children have to be talked to it at their developmental level and i think that by sharing appropriate information just enough for your child's developmental level and temperamental level you can enable the child to trust that adults will give enough information work through their feelings be included not isolated feel safe and able to help i cannot tell you how many times i've seen patients come in and if i say to them do you know why you're here they'll go no and they've they wouldn't even know they had the chronic condition and i think that becomes really anxiety provoking for children if parents don't tell them what disease that runs in the family but tell it at a developmental level if they've inherited the disease they may look at other family members to see how they reacted children take every thing in everything in and i also often say we need to have a yield go and and stop on children because yield means youth internalize every little detail and so they pick up everything and if they don't have all the information they're going to us make assumptions and their imagination is going to get away with them so we have to acknowledge your child's feelings but also understand they can't always label them and express them so some caregivers may work with psychologists what would you recommend for caregivers looking for a psychologist well they have to have interpersonal skills the psychologist does that is they have to show warmth really be accepting empathic good language skills you need to trust the psychologist and make sure that you're both on the same page somebody that will inspire you and also inspire you and rely on the best research evidence that is possible for whatever you're going there to get help with in the last episode you talked a lot about how patients should build a good relationship with their psychologist what advice or recommendations would you give for caregivers or members of the care circle to build a good relationship with their psychologist well they have to be honest they can't go in and sugarcoat it or anything they have to be honest and say exactly how they're feeling what they're up against they have to share it with clarity you know the professional also has to know the medical concepts and the patient letting the professional know what type of information so really the caregiver might have to educate the psychologist about the condition and then a good sign of a good psychologist and a good relationship is somebody that'll say wait a minute i've not heard of that can we just take five minutes or give me some something that i can fall back on then and only then is the information shared with compassion and an expectation of support is established and nurtured you have to feel nurtured especially going in as a caregiver or part of the care team or circle and would you recommend that members of the care circle see the same psychologist as a patient or do you think it's okay if they see separate people oh boy if you don't live like in an isolated region so if you don't live in let's say states like montana or wyoming north and south dakota where you have to travel a huge distance when i worked at colorado we had people driving from montana wyoming the dakotas there are only a few psychologists in that area if you do not live in one of those regions then no i would not recommend you see the same psychologist unless you're going there for couples or marriage therapy because if a psychologist sees more than one family member they have to be really careful to avoid conflicts that could sabotage the treatment lead to like termination so there's some bias that goes in into that or let's say the therapist can relate to the caregiver rather than the care receiver so i i would recommend not unless you live in an isolated area and what other types of support and resources would you recommend for members of the care circle just support groups therapy just establish good friends and family who want to help if you have someone who can help let them know like i said be very specific give them a list but also on the flip side saying no if you can't do something learn to say no and then surround yourself with things that inspire you make you happy encouragement educate yourself take care of yourself explore relaxation techniques or just take a moment in nature so much great advice both this episode and the last episode so before we end do you have anything else you would like to share with our listeners when it comes to caring for someone with a rare disease well for patients and their families i want to say hope is an integral part of coping hope is a process that makes meaning it really you have to have hope it's a fundamental human experience and above all hold on to that because everything that is done is done in hope perfect well thank you so so much for sharing your time with us today we found it extremely helpful and we hope our listeners have too thank you so much you're welcome thank you so we learned so much on this episode and we really can't thank dr buraker enough for sharing her expertise and experience caring for someone with a rare genetic disease can impact all aspects of your life