for others caring for ourselves we have a wonderful panel with us today today's topic is exploring the spirit and respite so so often in our culture i think we focus so much on the mental and physical aspects of our help but one of the greatest areas of neglect i think anyway is our spiritual dimension the spiritual character of each one of us that carries us through so much through our delights but also our challenges so today speaking of delight it's my pleasure to meet with three wonderful guests to really explore this hidden dementia  hidden dimension this show's panel will share their expertise in pastoral care yoga reeky and other healing practices as they work to support caregivers and their loved ones so to start i'm emily kermit's hosting the program this is a program produced by stacey hamlin who's behind the camera with the massachusetts lifespan respite coalition so today we have from the far left we have margie sokol we have in the middle joan ruffles and we have a net nicholas so begin the program asking each of you to introduce yourselves and speak a little bit about your background just your affiliation to start with margie why don't we start with you so my margie and i'm a social worker and i'm the director of spirituality and aging at jewish family and children's service and i'm also the director of the  center for jewish healing so what all of that means is that i mostly work with older adults who are dealing with illness loss caregiving stress those kinds of things people with parkinson's people dealing with dementia all kinds of chronic situations chronic illnesses that develop as we get older so that's really the focus of my work and i started the program over twenty years ago and so part of what i also do is project management as well as fundraising for the program great thank you important areas to have spiritual dimensions added to thank you joan welcome thank you i'm really thanks for having me on today we're excited to be here with one g and that in the viewers at home  name is joan ruffles and i am an integrative healing professional i'm a student of yoga currently completing my yoga teacher training something i started twenty two years ago and put it aside as i shifted my focus to raising my family i'm excited to be closing the loop with that i facilitate international wellness retreats the next one will be in february and say only show west indies and this past spring an interfaith chaplain and i visit ten memory care communities mostly on the north shore a little bit into the map and i've been working in memory care for seven years and bringing spiritual support specifically for about five years now primarily i come in with a program called cheerful spirit it integrates our senses and our faith and is a welcoming gathering for folks to  n be able to identify god in their lives we bring a lot of song into it and i also officiate church services in memory care communities i do private visits and i host creative writing workshops in memory care communities as well great thank you so leave an exciting panel here and when we dig a little deeper and why don't we start with you annette and if you could paint a picture for us about you know one of your sessions what would it look like if we were to walk into it but also speak a little bit about how you came to this work ok well i'll start with the journey i think i'm an artist by training and i had always been involved in prayer groups and interfaith work and i was a hospice volunteer and about ten you get ten years ago i began to feel a pull toward ministry in a more formal way and decided to go back for my master's and to also the cost of that i wanted to get back into the workforce and i had been at home with my children and the quickest way back was to become a certified nurse assistant i thought that's a good caregiver that's what i've been doing and so i did and i was hired and the folks that hired me saw my i guess my creative tendencies and i was transferred into the memory care community as a program assistant and that's where a lot of different during some threads of my life began to weave together and that's where the churchill spirit program emerged as a response to the needs of the residents of the community so the cheerful spirit program if you see it we meet in a circle or perhaps i have circled some a circle in the memory care community so there will be between six and twenty people depending on the community i have my music stand and i book and a ukulele i taught myself to play the ukulele to do this so  that's always evolving too and the program is about an hour it has a theme for the day and it's usually seasonal or tied to the holidays for whatever faith tradition might be having  celebrating a high holiday and this helps to orient us not only to the time of year but also to our our faith and our connection to spiritual can so it's meant to be a place where people can connect to spiritual ken tapping into our own experiences of faith and then identifying god working in our lives in our everyday lives so the program has that theme it revolves around prayer and scripture or music sometimes there's far i would be happy to bring in other other sacred texts these are the types that are relevant to my groups and that's the joy of the cheerful spirit program is that it really is tailored to the needs of the and the dynamics of the group so folks with that need memory support that have conquered of limitations it's really easily adaptable and their and their life experiences so that's the joy of it and it's also the joy of it for me because it's constantly evolving and constantly recreating itself and you'll see the people in the group sometimes are laughing sometimes were we adults as we're aging and how our faith how we sustain our faith as we get older what it means to be a faithful person as a and older adult agree pretty well thank you and one of the things that i think will start to explore and start to see are some of the similarities and differences in the work that you're all doing in terms of the ritual spaces created in things like that so i will circle back on joan would you like to speak a little bit about you know what what it would look like to see you practicing and then also a little bit about what brought you to the work sure so the work i envisioned myself doing is a form of yoga with caregivers and loved ones providing both with an opportunity for a connection with others through ritual meaningful conversation and doing some postures and providing the opportunity to journey inward to find the sparkle with then to the place o and kindness truth and peace to us within all of us the work i do will be directly with families and small groups that meet regularly the idea is to make this as easy and inviting for a family if that's possible to create a regenerative time in sacred space and to provide and practice simple tools and techniques to draw upon them in staying connected with our spiritual nature day to day living since my vision is at its inception i'm approaching this with some curiosity as to what wants to unfold i do want the work to help in that it gating feelings of loneliness and frenetic body energy so we get more with some postures to help release that energy and my hope is that the space that's now empty can be filled with the space of the divine to come expand beyond the group the other thing i'd really like our group to experience is being seen and heard from the space of our divine self i don't think that occurs enough and so that's my vision great thank you it's a wonderful vision thing and i know just from my experience of your work your vision is already actually unfolding i've seen in the memory cafe space you want to speak a little bit about to paint a picture about memory cafe space like the work that you did last week for example just so that the audience can have a tangible sense of what this looks like because i think it's a lovely guiding vision but you're already starting to implement it so one thing that i loved about the remake memory cafes in the merrimack valley was one was the name memory making cafes so we wanted the memory cafes to be present oriented we wanted them to be in the moment so last week we we had a cafe in which we the focus was stress management and the idea was to provide people with some tools to walk away with things that they could use in day to day life so we focused on some breathing simple breathing techniques that everyone can use any time anywhere when they're feeling stressed or overwhelmed and  and gentle postures in the connection that i'm really hoping the ritual part of connecting with others and and then i gentle guided meditation which was a new experience for several people in the group and they were open to it to receiving it and the idea behind that is just to begin to build a practice to just start to lower that stress along too to a neutral point so that's why i would like our groups to meet regularly just to kind of keep bringing that high stress level down and to balance great summary you know could you say a little bit more about what brought you to the work as well you talked about your vision you've given us a great example of where you're starting to really guide folks you know because of that vision so what moved you in this direction of identifying the spiritual need you know to support caregivers and how you made the transition yourself so at one point not too long ago it seemed like everyone i was meeting with was in a caregiver role it's funny how you draw these experiences to to yourself but i kept meeting with people who were very stressed maybe in new care gamers or trying to navigate how how to do this on top of an already full life and as one person was sharing their story with me about her caregiving experience and trying to coordinate her family around caregiving and coronated outside services  my sense was that there was no grounded in a sort anchor to do anything other than the next task that needs to be done and i was wondering where the spiritual connection w and not only that person's life but in caregivers lives in general where where do you draw strength from where's the foundation of common peace and you know love and all these things so  that's kind of what led me there i'm also a caregiver right now for a family member and you know it's a challenge for both parties that it's not just the caregiver and so you know it's important for me  the caregivers and their families and all but also on ourselves so you started to touch upon that too which is great we'll revisit that in a second so margie how about you can you paint a picture of some of the program sites that you facilitate in healing and generate spiritual support in and also speak a little bit you know how you came to the work so maybe i'll start with that  want to say how wonderful it is to be with them with the two of you and with you emilie to be with kindred spirits who care about this topic because i've cared about the topic of older people my whole life even when i was younger and i thought about it a lot because it's not true about our society in general i mean most of our society focuses on youth and there's a lot of ages i'm and there's a lot of stigma associated with a lot of things associated with aging and for me i've always had a very positive and a very of just it's been a love and i realize looking back on my life it's because i had four grandparents and i was very fortunate to have four grandparents and i felt very connected to and then i had all these other relatives  grew up surrounded by all these older people and like annette i also love you second i played the guitar and as a young person i would bring my guitar and i would play in nursing homes and those kinds of things and so it was something i did as a teenager and i saw the joy it brought to people at that age and i'm doing that now is a sixty two year old woman and i think to myself wow how lucky am i that i got to put this on my resume but may i play guitar and sing i'm going to do that i  me and you know i was in that was saying it brings such joy to people because it's a sense of connection it's things that are familiar songs that are still in that part of the brain the memories of those songs and the feelings that  e so some of my work i am playing the guitar and singing other times i am overseeing other people who are doing that we also go into north in homes and assisted living facilities and bring the spirit of sh it's not just for a jewish people it's for christian people as well and we have muslims who come because what i found is that as we get older we're looking for meaning and purpose in our lives and that's really what religion or spirituality gives us i mean that you know for some people they find a spiritual self in religion and for others religion isn't something they feel so great about or they've had some negative experiences or it's just not something they relate to but they can relate to spirituality and with spirituality it's just connecting to something greater than yourself so as i said it could be religion but it could also be nature and it can be music and it can be relationships so that's how i see the work that i do and i work a lot with people with parkinson's and their caregivers and we do parkinson's dance so we're dancing or listening to music and we're connecting to something greater than ourselves which is each other and not feeling isolated we also have a memory cafe as you were talking about and that's also very joyous filled with you know art related i guess to bring music and theater i also lead a healing circle for the staff where i work and i bring my tibetan bell and we sit there and we breathe and we meditate and i've been doing that for about sixteen years so we think about caregiving it's all so it's all ages and it's people in the workforce as you were mentioning joan that you're a caregiver so many people are caregivers and so it's a place for the staff to come once a month and be together and i lead a meditation and we do prayers for healing and so that's also i could be having my guitar or i could be walking around with a tibetan bell or i could be thinking about raising money for the programs because these are not programmed to get reimbursed you know luckily there are people of their the care about them but just to go back i think that's really i feel so fortunate that i had such positive experiences about my own grandparents and now that we're living longer with longevity i think valid it's the thing that really shifted in my life time is that we are now we're living longer and there are more this is good and it has started with the baby boomers but it's going to continue with the millennia old and generation x and so for living longer what does that say about the meaning and purpose in life and so that's really my thought where my focus is now well thank you i mean i think one of the things that we're touching upon is that it's so interesting you're all creating ritual spaces sacred spaces but then i'm also hearing that you're working with folks  developing skills that they take away from that and integrate into the every day space so that the spiritual dimension that you're speaking about doesn't stay just in that sacred space but in the staff in the workplace going to joan you know your breath and the idea of the scripture inspiring us but we carry that with us so i think that's one of my mighty always which is really thank you for that really powerful let me ask you jumping around a little bit from the gaiety questions but how have you been changed and actually i'll start with margie so you know this is a spiritual journey that we're all on in the sacred space and also in our day to day but you spoke a little bit about you know as a teen you know seeing the joy and i could hear just and also seeing your expression that you were touched by that and that kind of inscribed are etched in you something important your current work how does that touch you how does that impact you as well as part of this circle that you create so how does my current work impact me you know i was i've actually thought about this because you got the question you asked  question ahead of time and i thought about it and i really think that part of my work is also dealing with grief and loss which is also something else we don't talk about our culture so forget you know illness and all of those things but loss and so one of the first things i wanted to do when i started working the start of bereavement group and we have a bereavement group an ongoing bereavement group that's been for the last sixteen years so that anybody any point who's looking for a group can have a place to come and feel not alone because so much about this is not being alone and isolated and i think that when i think back on my life i had some early losses as a true year old and a six year old that i would never have known impacted me in the way that it was to go forward in my life  my work if i mother hadn't written about it in my baby book and i just realized thought it realized this in the last ten years that when i was two years old my great grandfather died and he just disappeared you know where it see i don't know i can't leave i don't i don't even know how to speak at that point but a four years old i said to my mother because she wrote it in the baby book i said which is great grandpa is here in heaven with god so clearly i've been thinking for two years where is great grandpa and can you imagine for two years is it so when we think of young children and how how impacted they are the now fast forward now and six years old and my grandfather died and i remember that very well and i was very close to him and by that point i understood really what death was and i said to my mother i wish i could visit with grandpa one more time so here we have a two year old who loses her great grandfather i'm thinking about death i don't no one's talking about it and now i'm six and i'm i get it and i'm devastated and so that stayed with me a long time and that sense of sort of the death anxiety that so many of us live with knowing that we are mortal and we are and how do we cope with that and as old as people are older it's even more relevant i mean not that we can't i have any age of course but as you're older it's built closer and so those questions of what does it all mean what is my life meant feels very much more pressing and i think that's what i feel i can give at this stage of my career because i've worked through some of those issues of my own  early traumas of loss to be able to be present with either at this point you know where they are now because i'm older and i've been able to deal with those things i would say for that th my professional life and i think you know what we're finding is that caregivers and you said even staff are caregivers i mean you know we we care very much about each other in different roles whether it's our immediate family or not but it's a constant journey where losses are very familiar companion whether you are journeying with someone or company someone who's you know aging more typically or a younger person living with challenges physical or you know cognitive or intellectual disability because the loss what i've heard in certain families is the loss of the expected and the mainstream narrative of what a healthy child right is a constant loss and you're always up against loss you know when you try to go shopping or the restaurant right when someone is marginalised they don't fit in to the mainstream idea of who we're supposed to be in terms of mental and physical ability and help our everyone's under twenty and running marathons so i think you know when we journey with the caregivers because of your personal experience you have want to cellular level what i'm hearing anyway is this real intimate journey since you were we one right with grief and loss and you carry that to your work with caregivers including staff it's really really lovely and powerful a powerful gifted say you know and i would just say that it's also just as you say just being with a person accompanying them sitting with them and not thinking that i have to change it or fix it in any way right right i know the fix it all that is it's felt and experience and it's my hope through this work that others can experience and feel that as well and that's that calm for a caregiver for example just being in a space with the divine i think lowers the stress level beyond the time we share together so so that's part of my hope in the work that i'm doing as far as it's funny the conversation that we just had about caregiving  because and loss because one of my questions is would caregiving what happens when you're no longer a caregiver and planting seeds and like what's your  and caregiving what's life beyond caregiving and can we begin to plant seeds during the caregiving process for what's next so that people can look forward to a new chapter and have begin to cultivate a vision for for a life beyond caregiving and something to look forward to you know and i'm wondering you know is there again like a ritual or rite of passage or something kind of you know formal that we can start to develop and support to mark this passage would that be great because i you know when i was coordinator of a day program and people passed sometimes expected sometimes not you know suddenly the caregiver sense of self identity and primary relationship is gone in a flash and even though they've been mourning or they've told me they've been mourning the loss of their loved one as you know they feel like dementia has stolen them away even though i feel like the work that you do counters that narrative a little bit or creates another space for a presence so it's not a total loss but anyway then the awaken the next day and they don't have a place but i think the spiritual dimension yeah because that's one of the things i hear with my older friends is the loneliness because most of their loved ones have passed their are living their loved ones and you know there's no rite of passage for for those you know repetitive losses and then to be on the other side of it so that's really provocative and important yeah well we'll handle that our next show the ri understanding of the viability of the spirit really deepened in my work and i'm going to piggyback off of something you said margery and that in your experience as a child but for two years when you didn't have words for it you were thinking about about your version i have this is at the very beginning of my ministry a gentleman came into the room where i was getting ready for the day and he was he often did you just sort of walk around and make small talk but he became more intense and not quite agitated but just as if something was really important so i stopped what i was doing and really was listening to him really hard for him to talk and what he began to tell me was the story of the separation between  him and his father and i said i hope you feel loved and supported that the decision you made was hard but it no it was ok for you because i knew his family really loved him and that maybe that love had been replaced and he said yes but it still hurts and i thought here this guy was for years without somebody to talk to about it and  and he worked hard to find the words for it and i've had that happen repeatedly that in my work i see the spirit coming out in often in one to one interactions sometimes in a question that comes up in the group and so i believe that our spirits are is the divine spark it's incorruptible it's there and it's still yearning to be expressed and it needs an avenue to do that and the losses as you said as we get older the losses just keep piling up and dementia doesn't stop the spirit from feeling that there's losses so i know this wasn't in one of the preparation questions but i thought we could you know wrap up today's session by with the brainstorming session  between all of us if you were to make one or two recommendations to rest that providers to folks starting a day program or memory cafe based on what you experience well we've been talking about what would be the two recommendations that you would give them in terms of supporting the spiritual so i can mull over that curfew second but  margie we'll start with you so we can we don't have to go ahead and bring in a spiritual into a new program and correct yeah so i think that i think that these words can be problematic that's even saying with better than it was maybe twenty years ago but when i use the wets why i like the title of director of spirituality and aging because in a oh well what does that mean exactly and people can get really turned off by it and i think it's real that we and i'm a social worker so i think it's all about meeting a person where they  it's not what i think or what i would want and so creating a space that safe that people can feel like they can be themselves that they can bring themselves that they can show up and that they're not going to be judged in any ways or criticized because we don't have many spaces like that out there in the world and if not you know not to even mention our own self criticism so forgettable so out in the world so a place where they can feel like they actually want to come and show up and they can feel like they belong and that's why i bring the tibetan bell and i come times i call it a singing bowl whatever you know it's just generic bell and people miss it when i'm when i'm not there if i'm away it's to go i'm thinking of the parkinson's dance program it's sitting in my office and if i'm away on vacation someone else will go and get the bell so it's something just as non threatening but that brings people together together in community so i'm hearing this sacred space a safe space a sense of community belonging you said you know and then ritual object that calls folks to be together and to be present so in this case a bell right now has an auditory aspect to it at least in this case so those are really interesting l we're going to kind of put together this you know recipe i don't borrow especially you know the coalition is funding we have a new round of many grants and i would love to see you know in some of these innovative programs you know some of these takeaways incorporated so we have a safe space with creating a sense of belonging to a ritual element that calls people together and a  wanted something similar they wanted a spiritual dimension to their wedding ceremony not religious but but some kind of a spiritual component and they wanted  ritual elements that go into the marriage ceremony they wanted to be seen in community as they came together and they wanted celebration fine enjoy with the community so that would be  another ingredient maybe fun in the way but also what i'm hearing and we've also heard it earlier to be seen in communities interesting not only to feel it but also to be seen i think cept maybe all of you spoke about that of us in the realm of dementia i think it matters more because what i'm going to say is thinking about the viability again the viability of the spirit but that spirit that divine spark that's still good and alert and attentive and wanting to express because it did the dementia story is about loss people are always described by what they can't do anymore and i have found that in dealing with putting aside those things and looking at that divine part of us enables people to be more than what their losses are and so i it's i think programming that and ritual that brings that out and identifies that right away on a good course and also think outside the box you know the embodied experience of ritual of being together it's not all words  it's all of our senses were created beings with a lot of ways of understanding each other and connecting to each other it's not all just verbal communication at a really tough and i think that's really important  many senses you know in the movement and the sound and of course to finding music we know this but now the sciences behind it smell so incense all of the different senses and you know that's a really good point so is there anything i know we're going to wrap up in a moment is there anything that you'd like to add i know annette you brought an image holiday card it's a painting of both kids going down on a toboggan and the community that i was working in i think every year runs a holiday card contest and so we in our community in the memory care community had a resident who was an artist  and i had been working with my group for a couple of years so what the picture i sent the picture in because it represented a team effort everybody belonged to everybody contributed to that image in opinions or in actually painting it or deciding what elements were going to be in there and we won and we got a cash prize for that and then we use that cash prize to install an american flag in the courtyard  the residence idea and we had a really meaningful ceremony and flag raising on the morial day were veterans share their stories and it was just really beautiful and spoke a little bit to legacy you know we could have used that money for a pizza party  or an ice cream social but they wanted to do something different so to me that represents other ways to talk into their spiritual needs of belonging of meaningfulness of legacy and teamwork being a part of something you can contribute and it was a really great experience i think that's great is freshly as we expand the notion of spirituality so we had these deliberately created sacred spaces but then we also have sports that create a ritualized you know sacred space where we can feel belonging we have flag ceremonies there are so many spaces that are ritualized that allow our emotions and sense of belonging to come out all the elements that you've already touched on so i'm really happy that you've expanded starting with the card by the team and then the flag ceremony and all of that being spiritual practice and expression is really  lovely do either of you have something that you want to add to the end of the conversation i had sent an image of the healing circle of the staff speak about that and i do want to say i want to make sure that since we're focusing our caregiving we have a free hotline at jewish family and children service that's open to the whole community and the phone number one eight hundred nine eight zero nine hundred eighty two it's free and open to the whole community so it's nine to five monday through friday so it's very important to take this seriously about being a resource for people in the caregiving role which is most of us so that goes back to the healing circle that i've been doing now for the past sixteen years and it changes over time when the staff changes over time so i've seen so many different experiences but recently and people come from all different backgrounds it's a healing circle that is not religiously based and only recently because i was doing in a vent did i find out that one of my colleagues had been coming to the circle for months and what it meant to her because her dad had been diagnosed with a terminal illness now i would never have known that if i wasn't doing an event and started talking to her about it because she was involved in the event as our events manager and she shared with me how much the healing circle meant to her and i asked her if she would publicly speak about it at the event and she was brave enough to do that and to see a younger person talk about what it meant to be in the work place and have a place where she can go once a month to really be there we also offer prayers for healing at the end the thing is though i would never have known that if i hadn't been doing this event and i talked to her about it and asked her to speak so i think sometimes we don't know i think more often than not we have no idea what our impact if and i think for me personally i just want to do the best i can in the work now and it's nice when you get feedback in that way but often it's like throwing a stone into the to the leg in the ripples go out and you have no idea where they went astray thank you and thank you for talking about the workplace in a survey we did the coalition did we found that the majority of the respondents said that they weren't they didn't feel it was safe in the workplace to talk about their caregiving burden but if they had a confidential space and someone besides their supervisor they would be able to share it so your image of the circle i think provides a safe space away from their supervisor and a confidential space it sounds like where you know the working caregivers can share since all things are new you see only beauty in that and you feel happy to be alive when we travel we walk toward adapting to new situations and receiving in return all of the thousand it's a blessing that life generously offers to those who seek them so i know people are burdened often by their caregiving responsibilities but if we can flip a switch and we can provide an opportunity for people to see those new eyes as if they've just returned from a fabulous vacation and can bring you know just incorporate that into their day to day life you know a magical moment would be being receptive to the thousands of blessings that life generously has to offer us in every moment great thank you thank you all for sharing your work and your vision with us and so delighted to have this sacred space an opening to make place for the spiritual dimension and respite and think the audience also for participating today