ourselves and caring for others who are co hosting myself emily curran's and stacy hammarlund who are both from the massachusetts lifespan respite coalition and we look forward to meeting you every monday every month right here and joining us for this conversation today's session is called caregiving reframed and i'm presenting on behalf of the massachusetts lifespan respite coalition we have two objectives today the first is that i share my caregiving journey with you i supported my parents who live more than a decade with dementia and i want to talk about the challenges that i faced the opportunities and the lessons that i learned but primarily i want to share that with you to use it as a springboard for an interactive form so that we can all share our stories of caregiving and we can provide one another with peer support and most importantly with resources so whatever hidden gems you used when you were caregiving are using we'd like to share those and hear more about it in general the television program goals is really to create an ongoing community conversation this is your program our program together it's about care giving respite to identify resources to support ourselves as we care with and for other people so that's the objective of today in the series in general so i want to start by introducing a concept that's been helpful to me and i don't know if it is for you but i'd like to hear more about that later for the first twenty minutes or so i'll share some of my experience as i said in some of the concepts and also statistics about caregiving and then we'll open it up to conversation but this concept that's helped me is the concept of the crucible the crucible in general sounds perhaps difficult but for me i found caregiving to be this really interesting painful mix where were really under pressure and if you think of a pet still  where mortar and pestle where we're making spices if you take a peppercorn and you grind it in the end you have this incredible spice and i don't want to sound pollyannaish about you know any of the suffering but i really believe that the crucible of caregiving as i experienced it was an opportunity and remains an opportunity for transformation and also possibility so the crucible concept has helped me greatly and again i'd like to hear from you later if that's something that's  interesting or provocative or useful and perhaps it is perhaps it isn't as all caregiving journeys i went through certain stages in my caregiving trajectory my crucible trajectory the first stage i call oblivion kind of playfully but in my thirty's i was starting my family my career and i had no clue about caregiving really except as a parent and i really had no idea about aging i was in the midwest teaching sociology as a young ph d sociologist and i was teaching about gender and globalisation ritual performance studies having a grand time and then i would say the second stage which most of us have probably shared is what i call the wake up call i received a call in the middle of that oblivion the great bubble from my mother saying that my father had received a diagnosis of alzheimer's but she told me honey don't worry and of course in that oblivion bubble fifteen hundred miles away i didn't i had no idea what that call meant a few months later my father or mother came to visit and then the wake up call really started to settle and i really began this journey of caregiving my father came and visit visited excuse me and as he always did he went for a walk and didn't come back he got lost in this new neighborhood i realized after the visit that my life needed to change that i could not support them from fifteen hundred miles away so that began you know a real transformation again getting back to that crucible i decided that i really wanted to journey with them i found a job back on the east coast i moved myself and my family back to the east coast in fact to my old neighborhood which i'll talk a little bit more about so that i could show up for this crucible and this opportunity after they both passed again both of them had dimentia i entered the third stage which i call recovery through action it really had been so painful and transformative that i left my academic career all together this gender and ritual in performance studies seemed like play and it seemed to have no relevance to the spoken system that i had just tried to navigate with my family the system of elder services that really isn't adequate in terms of providing support for my parents know several years later i say that i'm in not the final stage because i think it takes us a lifetime doesn't it to really metabolize and integrate all that happens you know while we're caregivers but now i'm really engaged with the coalition with stacy and others and with many of you here in the audience in trying to bring about systemic change through really leveraging our communities resources and also our personal experiences to really address the caregiving crucible to bring resources to bear to support others who are really in that crucible right now and so often times they feel so alone so right now the massachusetts lifespan respite coalition is partnering with organizations across the state to grow support for caregivers  including those who are working we're starting to work with corporations to support employees as well as consumers of support services so like in any caregiving journey and i ask you here in the audience to think about your own the way we carry give really is influenced by many factors especially our family and i came from i come from what i call a village family of sorts we're very traditional in terms of our core values we come from a large irish catholic family and proud of it we have core values that of family specially extended family religion i was brought up in the catholic school systems respect love and education but my family was also unusual in that they were counter cultural by that what i mean is they weren't materialistic at all the end goal was to be a good person and to be educated and to really have faith that god will provide you know so the job and money was not important what was important is how we love and this is really important to think about in terms of my caregiving model so i had this core value grid and what i saw around me was that my elders died in their home my grandmother took care of her mother my mother took care of her mother the elders in our families died in their home this presented me with a really unusual challenge for my family because i'm a new generation and as a high powered career woman i worked outside the home so i had these core values this village family and yet i also had a career so i was very much torn and that created a lot of problems in this crucible and like all of you i had to make some difficult choices in three areas especially in my career i ended up leaving my first tenure track position  tenure track for academics is really important it means security and it also means you know promotion but mostly stability for the career of the family i left my first tenure track position in the midwest to come home as i mentioned earlier to be near my folks i was lucky to secure another tenure track position here at a local college so i was very blessed with that gift i made choices regarding my family my husband had the opportunity to work in jakarta a dream position and i decided i did not want to leave my my father my parents for those two years so we commuted around the world every three months we visited each other and skype and i know that all of you are making the sacrifices and choices to very difficult to make but very important in terms of again thinking about that crucible in the transformation in terms of my home we left our home as i said in the midwest we purchased a home down the street from my parents to keep them in the neighborhood and also to facilitate the ease of caregiving so i could work but come home and in my own neighborhood i would find my parents and be able to support them so these were some of my choices and i know will open it up after to hear about your choices as well we had a family vision a plan and i'm sure you all do too this was our plan this was the vision the parents would remain in our home in their home as long as possible they would move just down the street to my house when they needed more support so they could stay in their village they could stay near their church and again that was really the most important thing to them and i could continue teaching i thought i could teach full time tenure track get tenure it offered a flexible schedule i thought and i had the ability to prepare my classes and also you know care caregiver with my folks the reality as all of us know here in the audience as caregivers the reality very seldom matches the plan of the vision right so that was true in my case the family's reality was that they refused to leave their home and i'm sure i probably will too when i'm older they refuse support services i hired housekeepers to come in to my mother would meet them at the door and tell them they weren't needed i found a day program for my father and my mother would meet the van and say i'm sorry he doesn't feel like going today she was really at the home and did not want her daughter to be at the home ultimately what this meant was that they stayed in their home as long as they could but it got to a point where they had to move into assisted living the other thing that's not on here is that we actually held each other and cried one day and laughed simultaneously realizing that we were two really strong and stubborn woman and that we could not live together and to honor each other as independent woman that just didn't work and so they pretty much decided even in their early dementia they both had dementia that assisted living would be better all timidly after my mom fell and broke her hip they moved to a nursing home where they lived and ultimately died together in the nursing home as you know based on my family's vision that i just shared with you this was not this did not meet the ideal the decisions and the impact were huge i was trying to as many of you are i know trying to juggle work and family you know obligations so i was juggling teaching and writing conferences and caregiving just as an example the day my mom broke her hip i was teaching a class and i also was to give a paper at a conference in boston so i got that call another wake up call and what i did was i called my teaching assistant and i said put a video in you run the class i delivered the paper at the conference and  i rushed to the hospital i was called in by the dean to say that i should never have done that i was scolded and i realize i'm just not meeting the bar you know in terms of the tenure track position i ended up taking a year off and i again i know some of you have done this as well without pay using the family pay act or a family leave act and when i returned after that year my same dean said to me where's your book you were writing all year and i said glibly you know my parents in my book well that was the beginning of the end of that tenure track position they terminated my contract the next year saying i didn't have the book so they were going to put me up for tenure but you know all of us are making these difficult decisions right and the thing that i realize is i didn't have much support in discerning what these decisions would mean in terms of a long life of teaching and a career life and that's one of things we can talk about later how can we get support to help us discern you know what decisions to make every family has a caregiving structure and i know i've spoken with some of you i'm one of six children but there were two at the helm right in the end two left standing really for caregiving myself and one of my other sisters we divided the support i did the case work i call it which was really the social services and anything emotional and psychological and human service relation related and my sister who doesn't want to go there in terms of the heart even though she's very loving she took care of the financial and legal and it was a good team but you know we had very few supports even though we were highly educated solidly middle class we were fledgling you know we really didn't know what we were doing we at that point i had counselling and i recommend it for everyone who's going through caregiving to get counselling for ourselves as support i had my spouse was very supportive and i had a wonderful daughter teenager that time who was also supportive and very close to her her grandparents but work as you heard was not supportive their faith community cannot get out there to give them communion or to visit as we used to do as children my parents friends and i'm sure many of you have experienced this became frightened and nervous around dementia maybe they too almost as a cold might catch the mention they distanced themselves a little from other siblings except to weigh in in a critical way so but for different reasons to be fair some did not live closely and also because every family has emotional entanglements and we like others also did so really the burden lay on the two of us and in all fairness i my siblings will accuse me of this and i honestly now believe it's true they said i came back from the midwest riding my white horse you know as a knight who was going to fix everything and you know i humbly say that now that i think they were right i thought i could fix this and i had a plan anyway through all of this and i know that you're you two are learning these skills the crucible provides  development i've always been a fighter but i didn't know really much about advocacy and i know here in the audience you've written letters you fought like hell to have your loved ones supported through institutions in the political realm right up to the end we learned about consumer rights you know i had a cardiologist you know and the neurologist who said my mother would die anyway so she didn't need neurological testing and also you know so i  learned about ethics and the difficulty in discerning like when to actually stop having testing my father in late stages dimentia for example was being tested for bone cancer very very difficult painful process and finally after several months of this i'm a slow learner sometimes i realize what we doing you know when i was able as a consumer to say to the medical community enough we're not doing this i learned diplomacy most importantly self care and we'll talk a little bit about this in a minute  perhaps you know one of the most important things is presence i really had to learn you know how to show up without being stressed out and my favorite montra became you know beyond perfection is good enough and i always  perfection in the care for my parents i realize that we're just all humans trying to in most cases do the best we can and when that's not the case then the advocacy kicks in right and also i developed a business mindset i started to feel like we  need to be stewards of taxpayers money that a lot of it was not used efficiently and i know some of you are advocating for better use of funds to support you in yourself and your loved ones and these are skills that stay with me today so that's my story and i know we're going to have time after for you to share yours but let's take a step back and place my story and your stories within a broader context because i think it's really important to look at that just a few years ago a couple years ago tw the a a r p in their state in their research found that forty million family caregivers in the u s provided an estimated thirty seven billion hours of care that's remarkable magine if we all got paid for that the estimated value of our unpaid service at that time was approximately four hundred seventy billion dollars amazing they also learned that caregivers spend an average of eighteen hours per week providing care to a family member and i know that many of you here provide much much more than that that's just the average the personal costs a tremendous we know that more than half of caregivers feel overwhelmed by caregiving that we're using our own money sixty eight percent of those polled using their own money to care for family members forty percent almost forty percent feel financially strained most importantly and it's just only now starting to be acknowledged caregivers are more likely to suffer from depression or anxiety and also have long term medical problems weaker immune responses and slower wound healing and also mental health problems i don't know about you but for me much of the ten years was i was really in adrenaline mode the fight mode and after both my folks died i took a gap year i call it like the kids take i volunteered but my body just fell apart and i think it was due to impart the ten years of stress accumulating a cellular level with the workplace also is experiencing tremendous cost and i think this is where we can start to partner with corporations to really get them to acknowledge the caregiver costs that's hitting not only individuals but their bottom line we have a lot of statistics from research that's been recently published one in four workers over age twenty five are family caregivers we know that nearly three quarters of them over forty say that flexibility work would help them create a better work life balance we know that more than half fifty nine percent of informal caregivers have jobs in addition to caring for another person i shared my story and i know the room is full of those stories we know that seventy percent in two thousand and nine were working at some time while caregiving and we also know that sixty six percent of these those in this study had to go to work late leave early or actually take time off so this means sobering business losses for our  corporations for our economy businesses lose between seventeen and thirty three and a half billion dollars per year according to one study due to the impact of caregiving on the workers there are other statistics that show that nearly twelve percent of these seventeen thousand employees that were polled care for an older person most importantly it costs the employers an estimated thirteen billion dollars per year because the caregivers incur  additional health problems that we just spoke about depression mental health issues physical issues so it's not just the older workers and i think that's what something we can talk about how to reach the younger workers as well i know my daughter who's twenty eight is a millennia l and she's squarely starting to take care of her father and i know this room also is full of folks who have younger people in their family who are sharing the caregiving burden so the last part of this presentation then will break for conversation and have a more interactive form is to think in a new refreshing way about respite the government has a definition for respite and we've been trying to use it number tiriel so we're finding is just deadly so what is there for us definitions is respite is a coordinated systems of accessible community based respite services courses redundancy there right but for all family caregivers regardless of age or special need and i guess what we need talk about what does this really mean i talk to my surgeon and i said you know you know how are you giving respite your caregivers he's at respite what's respite you know so i think that you know the many problems with this terminology as we try to do outreach to caregivers and talk about respite first of all it sounds very medical caregivers don't think they need it i don't need a break i can do this i didn't think i needed one for ten years caregivers a proud they also don't trust others to help and again and will open up for conversation to think does this reflect some of our experience too we don't want to jeopardize our jobs so as i'm trying to partner with corporations i'm learning that actually workers do not want to let their their supervisors know that they're they're really afraid and feel vulnerable that they might lose their job if they knew if their bosses knew the extent of the caregiving burden others see the community doesn't know what it means we talked about that already and others are simply unaware of the invisible caregiving so what i'm inviting us to do today together collectively and for this new t v series two is to think about how to reframe respite i googled the definition of respite historically and in the thirteenth century latin term it has really interesting meeting it means consideration recourse were guard look at and see and to me i thought this was really interesting because when we think of respite or when i talk to folks and hear what they think about in terms of us but often it means going away from but this goes back to my crucible journey caregiving journey with my folks one of the things i found was that i actually experienced a respite when i learned to be more present to my folks without stress so isn't that ironic i thought i needed to leave but actually i needed to learn to show up differently you know without so many expectations so anyway i offer that for us to talk about we also need a new frame and some recent research is really interesting dr dale lund from california state is finding in his surveys that a break from caregiving responsibilities in and of itself isn't enough to help the caregiver that it has to be meaningful so he's finding that if if folks take a break but they're paying bills and catching up on chores that actually can lead to increased depression he's finding that if if caregivers have a chance to go back to  continue activities that they loved before their caregiving kicked in that that actually is the real respite so if someone was able to pay to read a book or write that that provides more meaningful respite than  oftentimes think of you know ok i'll go pay bills and run errands so we're finding the coalition that this is really helpful when we meet with caregivers were able to say what do you want to do with your time off what would be really meaningful we know you have chores we know you have bills to pay but is there something that you would love we had a focus group with some caregivers who have children living with autism and one of the woman said i want my nails done and a policy maker actually said to me nails that's not the message we want and actually we said nails is the message we want self care that other women are able to other people are able to receive is exactly what respite should be you know not other piece that we learned is that it's unique some people for some people doing the chores is meaningful respite other people need pampering so to think about respite differently is really what we're about today and i invite us to think we know what would it look respite were integrated again like as part of our presence in our daily sights of activity so that someone doesn't have to leave the home to get respite if you had respite coming into the home you have short term nursing homes day hospitals these are all traditional sites for respite but they're not really integrated into our daily activities and sites what would it look like if caregiving were seen if it were valued if respite could be found in our workplaces in our faith places our faith communities our shopping places imagine if the appalachian mountain club you know really reframed its marketing to target caregivers and their activities marketing them as a respite activities how about the gym or the wise mass audubon we can talk about maybe other places but what i'm thinking is that how can we as a community leverage resources to reduce the isolation  caregiver sometimes when we leave our household were to receive rest but we're still isolated that's not the point necessarily the physical departure i have some more ideas here you know what are the interests of the caregiver like getting back to doctor research you know how can we reconnect people with those interests so wherever we go i think one of the things that i want us to start to think about is who's not here  oftentimes in our coalition meetings we say who's here but now who's who's not here and why where are the isolated folks one of my dear friends who's passed now but he had parkinson's he was a folk dancer as i am and  he would want to dance at festivals so we ended up creating a circuit you know at the festival and we would each take like two hours with ernie so we could all have a win win and we'd enjoy the festival we'd enjoy time with ernie and we'd also enjoy time apart but i think that's an example of you know where respite actually means presence showing up for something but in a different way not alone not carrying the burden and also not certainly you know with the loved one away you know either in the home alone and were out or vice versa but here we're all together enjoying this festival another quick story for respite is a fantasy i have i was in alaska and i met two old men two different times and they were sitting in the visitor centers by themselves it's unbelievable that this was the case and they were spending the day and i saddled up to one of them and i said what are you doing he said i'm waiting for my son who's hiking the glacier i said when will he be back i don't know he'll be back at the end of the day so folks from the cruises were getting off their cruise leaving their older and disoriented family member with at the visitor center while they went off hikes multi multi hour hikes and i said this is a business opportunity isn't it let's start a respite program with cruises you know for those who can't go hiking the glacier but let's have a meaningful activity for them at the visitor center but anyway it got me brainstorming about how we can do dressed bit differently also when i'm messaging you know we can talk about the story struggle and pain and we do but all so the laughter and joy and we've heard that a lot today when folks are sharing the stories that part of that crucible th transformation is also the possibility of a deep deep connection if we're able to show up for it in a renewed state right if we receive the respite but i fear and what we're seeing is that if we don't   and respite incorporated into our institutions into our communities really we are going to suffer and our bottom line our economy is going to suffer we don't have the caregivers coming up in the next generation we don't have the numbers and if those millennial are stressed as they start their own families and care for the boomers who are in deep trouble as villages and as an economic system so one of the things that we're starting to do as a coalition is partner with businesses we're doing a survey monkey a quick online survey of employees to see what the caregiving burden is and then we're hoping to respond with some of these respite ideas support groups referrals but i'm hoping also with more innovative programs based on the interests of the working caregivers another thing is to look at the arts right look at the arts i was blessed to have a small grant and i did an art installation on dementia and it was really healing for me and my family but it also raised awareness that the family system is affected by caregiving not just the caregiver and the kerry sippin but the whole system so we can use the arts also to create respite opportunities  finally and i'm looking at the time we know that caregiving has an impact we all know that here but it's also an opportunity as i said we can seize this historic opportunity you know to really make caregiving a valuable  resource for us it's really a flip in perspective isn't it to rebranded and also to grow partnerships as we've talked about already finally i want to share with you and we can talk more as a group some of the traditional resources i think part of respite needs to be not only concepts and vision but real tangible resources so we have the massachusetts lifespan respite coalition that stacy and i are part of and that this series  that we're started kicking off today is really resource for and from the coalition we have the aging in fall which is the aging infrastructure throughout the u s throughout massachusetts and the u s we have employee caregiver supports we also have disability resources and senior centers but what's very exciting to me and to all of us in the coalition and i hope we can talk about it as an audience and some of the innovative resources stac and i have met with two young men who are developed an app and they start a business called intelli care kind of like the taxi so you can on demand if you have a last minute respite need you can use  and the millennial will be on it they'll use this app to find the most skilled and nearest respite worker and it's quite affordable and it's brilliant we also have many grantees that are funded through the  coalition every year they receive a small amount of money and we're following that with the impact evaluation to see what their innovations are we have the memory cafe for example has a new model where again the person being in isn't dropped off for respite folks come together with their loved ones and they have a great time at this cafe so that's another way to get back to thirteenth century notion of respite as presence and  regard and connection funnily i attended a workshop on digital technology for caregivers so there are a lot of digital apps to help schedule care and to really relieve some of the burden that traditionally has been on you know the individual caregiver so i will end this part of the show with a presentation if you want more information you can contact me or stacy here's my e mail i'm part of the massachusetts lifespan respite coalition and we invite you also to join the coalition we're still taping and hopefully you're interested in sharing some of your stories or some are your thoughts what are your some what are some of your thoughts and experiences hospital so what i had to do was i had to get her benefits that didn't exist and i had to start putting myself on different committees and keep on going and and i had finally i ended up on the highest committee in the state and i was able to tell when my daughter was they said because the insurance is run out we're going to put her in the shelter and she was only eighteen very psychotic and no child goes into a shelter but i couldn't take care of her home so they had to be new rules n experience than anybody else so they put her on a new medication and this new medication had come from i think it was australia to begin with then it went to  china but nobody was realising that people were dying from this medication was so when it came to the united states they put anybody who was on this medication on a d i got four point seven million dollars for the department of mental health on the sale of them for state hospital for offsite housing and i grow not only has my daughter grown but i grown i learned about every mental illness that there possibly is and so that is a recovery story happy story it is and i suppose i can be grateful that my life has gone in terms of the different stages of healing you know you've also moved to be advocates and bring about systemic change in terms of roles here so wonderful wonderful role models for other caregivers you know who are watching today that's one of the hidden gems that we have to wrap up now but we can continue the conversation but one of the hidden rested gems i think our caregivers who are experienced with you know having gone through this crucible that we talked about come out on the other side you know strong resilient again warriors in a way you know can help other caregivers you know with what you've both learned and you know exactly more compassionate but you also have tangible skills both of you that you've talked about and you can see how you've used that so i look forward to you joining us for the next sessions and also spreading the word because it will be as we said a monthly show and we want to invite you to come but also if you or others want to present you know have different topics so we look forward to making this a community forum as we said before for further discussion so thank you both and thank everyone