welcome everyone to another show caring for others caring for ourselves my name's emily kearns and i'm hosting the show and my colleague stacy hammarlund is producing the show we are with the massachusetts lifespan respite coalition and we are delighted to bring you a special show tonight focusing on life after caregiving we have three amazing woman who will be on our panel today and i'll pause and let them introduce themselves if you could say a little bit about who you are and just a sense a sentence or two about your carrie giving journey let's start with rachel ok i'm rachel rosenbloom i'm from lexington massachusetts my husband died of parkinson's in early two thousand and sixteen and he required caregiving for the last four years of his life so it was during that period that things became redefined in terms of caregiving great thank you joan spence from reading and  i was teacher before i retired i have four certifications to teach in massachusetts and my husband ernie had parkinson's for over twenty five years he died in two thousand and eleven so i have been readjusting for six years thank you deborah my name is stepper dillard live in arlington and after my dad passed and nine years ago i started to take care of my mom in whatever ways she needed and then several years ago she was diagnosed with dementia and i was very involved with her care for the last several years of her life she said march thirty first so in two thousand and sixteen and today was the day of her burial a year ago well welcome to all of you and thank you for joining us i know this will be an intense conversation in many ways but i think the wisdom that you have to share is really valuable so again thank you honored to be with you today let's start with a fairy first question which i live and three active committees at my church plus i have time for my family i have three children seven grandchildren five great grandchildren and i do lend a week or so so that i suppose i can now pursue my hobby of sewing the inquiry so you're very very busy with him in many ways which is really wonderful rachael how what you put you know it's it's complicated because it's not only adjusting to past caregiving but it's adjusting to the loss of a loved one and so it's the loss i think which which provided me with so much open free time free emotional time for a physical time not always happy but that's the way it was but suddenly a whole lot of energy my times have been have changed only only in quantity not in quality i had a number of volunteer interest before after retirement and before my husband became ill and he insisted that i maintain those connections he knew they were important for me and while i modified the degree to which i was involved i nonetheless maintained a connection so after he passed away i was able to pick up on those connections again slowly aggressively and so i again find myself too and overextended but also very much involved in relationships i think probably more but we'll talk we'll talk about that in a bit but i think very involved with people which is very nice very wonderful thank you deborah how about yourself i think it could hit my day to day couldn't be any more different now than it was in the last couple of years of my mom's life particularly very close to that and there was so much anxiety and t and and also real joy and connection in so many parts of my life and without that priority you know it's that was she was my number one priority so it's really been a process of figuring out so what are my priorities now that she's not there and i don't have children so i think i really learned about what caregiv about by taking care of my mother and that so that's now what is that now the big question for me yeah i mean i think that's one of the interesting things is that you're all at different stages of  transition and you know you're so newly on the other side and still sorting through is what i'm hearing and rachel and joan you know you've been transitioning for quite a while and kind of have a pattern established or new rhythm right i had been transitioning for quite a while my husband just died fourteen months ago ok he's already a model so so it's not it's not so long but that's very but we were prepared for it and i was in terms of my activities prepared to move back into into things that interested me so it really hasn't been so long ok good to think it over and really i me not just this relationship with my mother that i'll never replace has it's true i'm sure for you with your little ones you never got it's a relationship you'll never have that that one that particular relationship with anyone again been caring for and you already as a group touching on the different dimensions you know you start talking about even the day to day activities but then also you've gone to the deep heartfelt loss so you have not the superficial but you know what we see in our day to day but caregiver to take care of my folks are joining with my folks to both had dementia which changed my life so when i say we it's sometimes i insert but we're here to listen to your stories so but that's why the pronouns will switch every now and then but how have  we how have you been impacted what has been the the change that you've identified that you think you've experienced in terms of who you've become what your little world is you know like  because of the caregiving journey joan let me let's start with you ok i have a very strong faith in god and i know more fully now that god is there just for the yesterday and i have an example of that  parkinson's was my husband was progressive and it was a slow progression but at the end i had to give full attention to him and i would go to bed at night exhausted and i would say to god i can't do this by myself god help me and i would wake up in the morning and be at it again till he passed so that was one good benefits that came out of it and that has sustained that fails and that turning the ok so long term impact that i was very blessed to have him for so many years and i her medical care team and all of the beautiful people who helped with her over time particularly in the last several months i got to be with her and with all those people through this really challenging time and i can't help but think that that's change me i'm not really sure all the ways that that's changed  the one thing i can say is that as i did more and more from my mother over the years initially just helping her stay in her home independently help support her to do that and so she and my dad were married for sixty years and that was a huge loss when he died because they've done everything i mean i i just i feel like to understand so much about what you two are going through fight watching what my mom went through about her husband of sixty years died and and how all the multiple ways that she think all that's pretty simple or that's really complicated and i thought how to figure out how to do it because we were this team but i had to figure out those parts for her and then slowly over time i started to believe you know i probably can't do anything so i think that that was that was  one of the ways that i changed in the process was more belief that i have more belief and in my own ability to handle whatever that is my view just sets really marvelous in terms of the they honor piece of the on a piece you know he was just such a wonderful man and he was a good patient and and there was nothing that got in the way of our love for each other dearly right up to the very end you know one sometimes hears about people who become more so they become more difficult and more angry or frustrated or whatever and there were times when he was frustrated and of course he lost a lot of capacity with parkinson's disease and lost a lot of what he was able to do what made him who he was and yet he maintained a a beautiful approach to it all he was a scientist and he was kind of curious to see how this was going to go and and he maintained a very good state of mind i think in personality and so we were able to have that time together which was precious and  i just i just felt i was very fortunate to have had it to have been his partner through all of this so after woods because the question was how did caregiving change you were made so i'm not sure  but i will say that the many many friends who came to be part of our lives during these years i am still close to comfortable with i i value relationships and friendships very very much i'm not sure it's more than before but maybe i'm giving it more of a priority to me for and i think that  think i think that that probably the major legacy at this point it's interesting one of the things i'm hearing from all of you is this deep sense of appreciation and presence that i know for myself i don't carry through my day to day unless i'm close to someone who's passing or and then the whole world is really crisp and clear and priorities are in place and there's no question but it's interesting to hear i think is that is that strong like this is the only place i need to be this is it in all the world this moment these moments no matter how frustrating and and difficult and slightly provoking and how every minute i was waiting for the other shoe to drop and couldn't be anywhere without my phone at all times because i never knew what fired needed to be right out at any given time all of that but at the core of that was also the the tenderness between the people who were taking care of her and her and my affect deep affection for that i'm not saying i had deep affection for everybody  beautiful and i want to say one of the things that i'm hearing and learning and experienced myself is that not everyone is able to what i've been saying is show up to do this work to do this journey and now in my life i've suspended my judgment because a little older and can understand it's more cult complex but i would say you know you say honor you know i'd say my own life a perverse blessing perverse blessing acknowledge the tremendous opportunity you had but you took you know and courage and to just honor it you know to use that word to borrow it but for this showing up piece of it because in our journey i remember ernie for example you know in the hospital been in his last days the people would stand at the door some folks they were able to come into that space and i thought it was an analogy or metaphor rather for me and it's not that people were any more special or not but just some people were graced with the courage and the skills to be able to show and i think the three of you i'm hearing there have been and the impact you're talking about is one of the returns on that not that you would plan it that way right but you know but oftentimes i think showing up is also what the relationship is yes i agree with this i mean as i had said before it was an honor to care for my husband but i'm not a caregiver in that  professionally you know it's not something i'm seeking to do again oh i'm a very nurturing caretaking person but i was thinking about this actually thinking about what if one of my children i have three  children five grandchildren what if somebody needed my help of the same nature would i be able to respond and i decided i would respond because they're mine but it's not the same as the same feeling the different kind of tragedy frankly because i couldn't i didn't want to leave myron it's not that i couldn't he might have been all right unless he felt poland but but but i wanted someone there with him to keep him company to talk to him to have conversations to stimulate him to sit with him at lunch something like that so so we had we had caregivers from one agency and for the most part they were sue perve and and really stuck with us then we stuck with them for a long time so i didn't have this as a perpetration question but we're talking about the magical times and you know what were some of the more difficult times what was some of the more challenging joan so i tried to have people come in and help toward the end and it was a disaster i had one fellow who came from one agency and just to back up a little bit i had crushed a vertebrae teacher which is a waste because i have had ernie he had put his head inside of his coat i went to hang it up and the car had fell out and i twisted and crushed vertebrae so i w to you know take care of him so i had a persons who came in from an agency and he had absolutely no idea what was going on already had one and to have in our an a grapefruit and so he looked at me and i said well you'll find one in the refrigerator was lying on the sofa your five one on the refrigerator you went to the refrigerator and came out with an orange and was looking for a gr and i said no it's to you know what and he said he said well i'll start to peel it and i said no please cut it in half and section that he looked at me blankly so finally i staggered over and had to do it and it was like there was everything that we asked him to do so that really didn't work very well for us but getting back to the other question on our yes to me this is what unconditional love unconditionally love and that is the most wonderful kind of love you could ever have well i expected something in return unconditional love yes yes your so let me ask you given you know we've been talking about all the positives and joan started talking about the complexity you know and also you know deborah you talked about you know it's not always perfect not al care support is perfect so now you're wiser for your journey we all are wiser for the journey what might you do differently knowing what you know now if you were to go back into time would there this a lot i have a long list of what i want to quickly and then again i wasn't i wasn't as i think probably intensively involved with care giving as you two were and i didn't live with my mother she was  assisted living and so that i could continue to work i and she think then as we had the income to hire for the last six months of her life somebody to do you want her around the clock because she needed someone there with her twenty four hours a day and so i could i visited you know a lot i organized all her care but i wasn't as intensively every day every minute as you were  but so i'm thinking what i would do differently towards the end of her life and this was really as she was dying and i i would have badgered her less about the things didn't really matter like eating and i mean it came down to some people like eating or walking or being awake or all of these things and just would have let her own rhythm at the end of her life dictate what happened i think i would have less and less to what other people said she needed and listened more to her and all the various ways that you learn to listen to someone who can't always communicate very clearly what it is that they need and you have got to dig real deep into that relationship to hear what's being said and i would have spoken out immediately if i even sense a whiff of the respect for her from anybody  i would have fired more people kicked more people out of the apartment and tolerated all a lot less bad care and gotten certain kinds of supports earlier for both of us  i would have asked her how she understood what was happening to her what mattered to her each moment and i would have asked if she knew she was dying and and how that was for her these are things that  i and and at the last i think i would have been better as being with her and not running around taking care of everything all the time somehow found a better balance and opened what is it to just sit with b you would really do nothing just be there versus organizing you know so i think there's always a balance and at the end of life i think the balance you know i just i think i could have done better  i reached a personal crisis of my goodness how am i going to handle this all and i don't mean the the management that's very easy but but the emotional burden of it all and where it was going and i joined a  support group for spousal caretakers at the parkinson's family support program a jewish family and children's service and that whole program was an enormously good resource for us and continues to be so i would have joined that group earlier i didn't have to wait till i had a crisis but a personal crisis but that's what i would have done differently because it was the most wonderful personal experience of that's what that i've ever had and the relationships that we developed between ourselves for the participants not all women there was some men who were caregiving to know lesson you know when the audience to invite the audience to think about because i work that and over senior center for a while and one of the things that i learned from a social worker there who i thought you know i thought was a little cynical but now i learned it was true she said you know you can try to do all the educational and planning sessions you want with families but it's when when they hit a crisis that they'll come and so i think that piece of advice and recommendation to get into a support group to seek resources so he was a have a concert contradict officer and we danced all over the place and he was very good at it and so one time i asked him if i could bring her contra dance  d and they said yes it was a very large room and there was a large group of people who have parkinson's and various stages and they made a huge circle we put the music on and every one of them was able to respond there was nicely around always wary obvious how much music means to them there was a good experience and there's a lot of research coming out there's a program called music in memory of the audience is interesting you can actually google and see also the documentary alive inside that is showing that folks who seem unresponsive actually when you put probably that he knew he couldn't do it so i had to watch him so finally we had to get out of our house and we've been in fifty five years because it had a half an acre to take care of and it had to basements had out of the room and up stairs and so forth he was falling and so i found a condo on one floor and the garage was right at the end of my car so i could just push him out and i transport chair get in the car without ever going outside again it worked beautifully if i had to ask him he probably would have said no but i didn't so i would have just took charge so sometimes you have to become the parent s they are you know have some sort of dementia and i found that my mother had also i was for ten years i was working at the time and so was my brother and my father had passed and so you know you don't argue west when they get to a certain stage w timers because it would do no good you just sort of agree or ask questions and try to divert their attention because pretty soon they're going to forget what they asked of first time anyone so you know they are all  thing when you mention the jewish family and children's services i was involved in a support group for adult children taking care of parents with dementia called balancing act oh  to how their relationship changes with someone who has dimension how to stay related through the whole the whole time and things that people would be interested in who have dementia how to how to make museum it really empowered me as a primary caregiver because the staff taught me how to take care of myron how to medicate him if necessary and what to expect twenty four hour call and i c all a call that night often times saying what does this mean there was always someone on duty it was it was really a wonderful wonderful program great so we've started to identify resources that folks can draw upon which is really wonderful as they're caregiving and also even later in addition to that what advice would you have for someone who is you know trying to find their footing after landing based on what you know and the journey that you've gone through the first thing i tell anybody is that grief has a life of its own and there are a lot of losses and don't let anybody tell you how long how long it's going to last or what it's going to look like because i think it's really different for everybody and and the loss in addition to the loss of the relationship we talked about th and their god and and all the people who cared for her so there's multiple losses and to just seek out whatever support you can get and if it doesn't fit don't do it and if it is you know you have that support support you know could be a spiritual one or quit for us we have lots of friends and of course i have such an extended family who are absolutely wonderful we're all different in many ways but we don't argue we don't really support one another and it's just fantastic and i can go through any of them in fact i have a grandson who lives  meet other in fact that was just together with a granddaughter who has a little fan who is nineteen months old and there's a new baby that's three weeks old and they came to visit me the other day and that was this lovely wonderful you're very lucky and i am very very so blessed i feel i thank god every day for my many blessings and you trav just to try to say positive and i know it's difficult but if you can find some support systems it will really help you reach out so my support systems evolve quickly that is some of the things i'm very involved with a common cause of massachusetts which is a nonpartisan political organization that that agenda will never be completed tragically and i do a lot of weaving which for me is a very centering activity and i about ten years ago i was the initiator of what has become a lexington at home which is an organization of people who want to remain in their own homes but need support social supports and ward to do so so yes it's a wonderful wonderful group and it certainly took good care of us and continues to it's just wonderful but what i'm saying is that by maintaining those relationships and then picking up and get on them it gave me a great deal of help as well as more engagement in my synagogue actually wonderful and yes i know it has been that has been very nurturing i would say also deborah that that love comes in many different forms in different ways you know when you  you know there are different kinds of love and relationships and and i am discovering is that it's perfectly possible to carry my ring in my heart all the time and still have other warm and loving relationships well that again is a lovely think way because what i want the audience to leave with and not only you know lessons from your journey but also the magic of that continues lives and so i'm asking you each to describe a particularly magic more magical moment that you know is affirming and i think carrying a loved one of the i'm feeling alone one in our day to day for me you know that's a that he and i did our build ourselves and he built almost everything literally built and warm and created everything in that house except the wallpapering painting which i did but he did all the woodworking so i'm surrounded by myron  and when i'm in the country where we have a home he's everywhere there he loved it so much that i just feel his presence everywhere so there's no one moment a one ahau magical moment in kind  of it's these more wonderful memories that are so sustaining while i go on and create a new life in myself so you were able to hold yeah hold it all simultaneously i was he was very clear that he wanted me to have  someone who loved me and took care of me he would call it a marriage but you know he was very old fashioned and it's not a marriage but it's a very close and a tense and intimate and and i feel very good about that and i feel as though it's it's consistent with what he would have wanted nothing thank you june or deb or a magical moment that's very concrete  the sense and one that a goal that i had hoped would happen my family realized how important what i did for earning you know how important it was and they will be doing the same thing at some time in the future for someone else and i want to be a role model before he died he was in the sawtelle house which is hospice unresponsive and they gave me a little pamphlet of the you know about dallas and the different stages you go through and you could see the stages he was passing so he was at a stage where he didn't everybody in the family volunteered to do various parts of the service except for one granddaughter and i said castrate you don't have to it's ok we love you anyway it's all right for the rest of them did they did readings and special go but there was no chance he was going to get better and so it was you know part of the way life is you were born and you go through life and you die and that's all part of the process and  it was a good experience in one sense absolutely and i'm thinking that you know adding to it that one of the things i've observed is that so in your present life you can look at that as part of your legacy and you actually  generation into the full circle of life in our culture we deny aging and death pretty much we bracket every price and you're welcome to look like to talk about i you know and so what legacy and that's a lovely magical moment to think about and to carry forward deborah so i don't think i have a specific moment but i'm a writer i write poetry and nonfiction and i wrote one of the biggest solaces of the year my mom's last year her life and the year since has been writing and because because i could write like maybe once a week while she was still alive there was a real immediacy about writing about the experience and the relationship and and then since it's just been writing about what you know what this transition is and what is that relationship now and who are trying to figure out like who am i now and  and i'm hoping to pull this together into probably a book about so caregiving during a lot of very late late in life caregiving and then  the year after the transition and the year after and i'm thinking about calling it believes the bird which is part of a quote by james autobahn he said if the bird in the book disagree belie think there are so many times in someone who has a chronic illness or a life threatening unless where there are so many experts telling you what is going on with that person but we don't always listen to the opportunity to offer any final thoughts before we wrap bob you know we invite the audience to think and to contribute you know you can e mail us and we'll also have if you want you know your contact information for follow up but we'd love to see your book we'd love to hear all the legacies going and also how your magic is unfolding as well but is there any closing thought the remarks that you have for the audience in terms of you know your journey i want to say as a caregiver because you rightfully kind of made that concept problematic that you're not a caregiver per se but that was that was a role that you play and caregivers bigger than just that label we have a problem of language but what would you like to say to the audience in closing oh goodness one of you have something to say before i try to say something insider in the medical world even though i have a lot of issues with that but i would say to everybody who's taking care of someone who is chronically ill do not be intimidated they are your person you are their advocate don't let that system that is so broken and intimidate you from getting care for that person that's sort of from my from that part of my life and it's difficult not to be intimidated sometimes and not to advocate for the best but also i'm very grateful and know that there are a lot of people who don't have access to what we had access to and i'm not sure you know i'm sure that in your respite care you're really dealing with people who don't have access to that at a nomics or race or  you know all those different reasons but i am so where that that everything that i'm saying today in my ability to be with her and to for to hire people so that i could continue to work all of that had to do with this incredible privilege we had for which i'm very grateful thank you thank you right i would agree with you that it was a great privilege and it was a remarkable and unforgettable experience caregiving but we're also talking about after caregiving that's a whole new exploration and as long as one still has one's health and well being and and can pursue will still hold them in your heart very closely and all that but it does get better and life has to go on and so you can pursue sins  that feed your soul thank you thank you well it's been truly an honor as i said earlier and i to learn from all of you and to share this time and to carry on together and so thank you thank you having a