Interview with Julia Soto Lebentritt

Julia Soto Lebentritt is a ‘lullabologist’ and the owner of Spontaneous Care Communications. She has spent her career recording, presenting and producing lullabies from the many cultures that make up our American society is commended for clarification of the lullaby as a genre and exploration of multicultural settings.  As an elder care case manager, bereavement facilitator, therapeutic activities director and a family member, she is a caregiver using lullaby traditions. She has certification in Alzheimer’s disease management and a master’s in fine arts in creative writing.

 

Interviewer:  Julia, it’s nice to talk to you today. We’ll talk about your book for caregivers, It’s called “As Long as You Sing, I’ll Dance: The Bond, not the Burden, the Blessing of Reciprocal Caregiving.” You draw on both professional and personal experience to write it. Can you give me a little background on that experience?

Julia Soto:  OK. The book is strongly motivated by my mother’s dementia that was a really traumatic experience for me and my family. I’ve always been involved with care giving in many different ways. I’m called a professional caregiver, meaning that I’ve worked in caregiving for the last 15 years or more, especially as an activities director at a CCRC and a case manager for the aging in a field position.

I was out in the field in northern Vermont. I’m also working now in bereavement at a community hospice. I have…I’ve worked in other positions that have been direct care, like nurse companion, and various ways that have been useful [inaudible 01:33] , but the major other part of this unique piece of my work is that it’s related to parenting, as well.

Interviewer:  You talk about reciprocal care giving. Is this a term that you’ve coined, or you’ve just developed? Can you tell me a little bit about what it means?

Julia:  I have…It’s my own method that I experienced. In the ’80s I had the opportunity through grants from several national, state, and local programs to develop a rather large project called, “The New York City Lullabies Project.” And in that I went out and recorded on‑site the actual soothing and relaxing of children. And I saw there that the partner, the adult partner, could not soothe or relax the child without soothing and relaxing themselves. So I saw the reciprocal care that is available in good attached…as good attachments and bonding in the parent child/relationship, so that means it’s a mutual thing. That there’s no way that you can quiet down another without quieting yourself first and soothing yourself.

So out of that came my experience of I went into healthcare facilities and worked. I saw that there was a stressed care going on. The caregivers were stressed. It was a stressful place, and that if they could come for heart‑to‑heart care.

And even on your website I noticed today that there’s a mention of a quote. A happy senior says, “What we noticed immediately was that the employees treated the residents as friends and in some cases family.” And so what comes naturally really is, for the human being, caring and kindness, but if not nurtured and maybe also helped along by being encouraged that we should be interested in present in the moment, that caregiving is not reciprocal. In other words you’re not caring for yourself at the same time as you are caring for another when you are not giving reciprocal care.

Interviewer:  OK. So tell me then about the lullabies, and how they have a place in care giving through reciprocal care giving.

Julia:  Yes. First of all, I want to make it clear that I’m not talking about the recorded lullaby with music. I am talking about music. I’m talking more about the ways that the kinds of communications that the lullabies encourage. So in my book I’ve actually done an interesting piece of work in breaking out what lullaby communications are like, so the book includes activities that relate to humming, rocking, swaying, singing names, traditions of gathering. That’s like storytelling, other ways that we can gather through traditions that we create, tapping, echoing gentle touch. So I’m talking about the communications that the lullabies encourage, as well as the singing of certain songs that are appropriate and are meaningful to the people we’re working with.

Interviewer:  You say in your book that people with Alzheimer’s or dementia remember feelings associated with places and people even if they don’t directly remember the place or the person. So would you say that your therapies are ways to elicit memories of those feelings? Or to create a safe and familiar platform?

Julia:  Yes, absolutely. One of the major points in the book is making is that it’s a myth that there’s nothing there at all. Memories are sensual, related to sensual experiences, and the problem is is that we have to accept that we can no longer communicate just with language as if it were in an office somewhere or that the caregiving can be tremendously creative like our parents were creative in caregiving, that we can actually find a way that brings us back to our more original language, which there were many options when we were growing up as children to use sound, touch, movement, and all of these will help bring back memories and physical activity as well. And that is profound. There have been many examples lately, especially on the Internet, the viral example of that elder that was having no response at all in a wheelchair, and then suddenly they played some jazz from his youth on some iPod, and he became totally electric and shared memories of seeing Cab Calloway, or someone like that. It’s amazing.

Interviewer:  It is. That’s really neat. Do you think just because we begin to rely so much on verbal communication that we forget these things?

Julia:  Definitely, yes, we very…and that’s what’s stressing our society or culture today. We were not really built for the speed that we’re moving at and the daily census that has to be kept at such a large number and the requirements of documentation. We were not really built for that, and we’re involved as caregivers and as human communication. Also I want to point out, Carrie, that the history here is important to look at because dementia was originally treated under psychiatric nursing, and geriatric nursing is a fairly new and emerging field. So, for instance, my Aunt Sadie ended up in a mental institution because she was senile, they said. And that wasn’t that long ago, that that was how we took care of people who begin to exhibit dementia, and couldn’t be left alone, you know?

Interviewer:  So your book is really useful for caregivers across the spectrum, whether you’re caregiving in your home or for people working in a facility.

Julia:  Yes, thank you. I just want to point out that I had an experience in a wonderful CCRC in Vermont, northern Vermont. Wake Robin is the name of it, and there we had a group of independent, and some assisted living people, who joined the St. Bernard’s. And they become caregivers of these skilled living facility residents. And they were companions using the kinds of activities that I’m proposing in my book. I recently was visiting and doing a program at a facility in Albany, at the Region House, and one of the elders went off happily with the book, because she said, “We can do this. We can do this. We can help other people. I know this song.” So I think the caregiver, the people who are in your facilities can caregive.

Interviewer:  Definitely.

Julie:  Yeah.

Interviewer:  Great. OK. Again, the book is called “As Long as You Sing, I’ll Dance: The Bonds, Not the Burden, The Blessing of Reciprocal Caregiving.” I can find that on Amazon.com. Is that right?

Julie:  Yes, that’s true.

Interviewer:  OK. Thank you so much for your time today. I really appreciate talking to you.

Julie:  OK. Thank you Carrie, and let me know what
Transcription by CastingWords

Interview with Carol Bradley Bursack

Carol Bradley Bursack has devoted much of her professional career to educating caregivers, both professional and non, on the importance of caring for their loved ones and themselves. She is a regular contributor to various industry leading blogs including HealthCentral/Alzheimer’s, and the forum moderator and a regular contributor to AgingCare.com. She is also the author of “Minding Our Elders:Caregivers Share their Personal Stories” and runs MindingOurElders.com a portable care giving support organization.

Erin:  All right. Can you give me a basic description of what you do?

Carol Bradley Bursack:  Yes. I’m an author, columnist, blogger. I’m a forum moderator and anything else. I support caregivers, pretty much. My aim is to support caregivers along their journey, based on what I’ve been through. Also, I’m very strong on preserving the dignity of elders. My background is a family caregiver, as you’ve seen, of multiple elders, so most caregivers can relate to me. I can generally tell them how to sell their experience in one of my seven elders to what they’re going through. Anyway, that…

Erin:  [inaudible 00:54] .

Carol:  Pardon?

Erin:  I said, you definitely can, yes.

Carol:  Yes. Anyway, what I do is really offer support from the depth of my experience. Plus, all the years I’ve done…I’ve learned so much from other caregivers. It all has built over the last decade to the point that…It’s a matter of give and take, but I do draw on my background a great deal. I just want people to know they’re not alone. That’s the whole point of my website, my book, everything else I do. They are not alone in this. When I first started, there was almost no support, and it was extremely isolating. I know now how isolating people can be now, even though there is a lot of support, so I try and help them along.

Erin:  What should a loved one do if they suspect their elderly loved one may have memory loss?

Carol:  I would take the person to a physician who understands that memory loss may not be due to dementia. There are other causes. That’s one of the reasons for so many misdiagnoses. UTIs, medication problems, and other health problems can have people acting like they’ve got dementia when they don’t. They can mimic dementia‑like behavior. Once those causes have been ruled out, then I make sure that they are given a battery of tests by some doctor, a specialist, probably, who understands the different types of dementia. Alzheimer’s can become a catch‑all, these days. Sometimes it’s important to decide what kind of dementia they’re dealing with once they’ve ruled out all other causes.

Erin:  How would somebody find out which doctors are familiar with dementia and Alzheimer’s?

Carol:  Generally, they’re neurologists. If they are able to get into a gerontologist for a beginning, that is wonderful. We don’t have enough gerontologists to handle all our elders. That is really the place to start, if they can get in to see a gerontologist. From there, a good gerontologist will direct the people to other doctors if they don’t feel that they have the expertise to make that diagnosis. If they can’t get into a gerontologist, and they see, say, their family doctor, they can test for a UTI or something of that nature, but probably, people should go and see a neurologist. Maybe check ahead, see if they deal with Alzheimer’s.

Word of mouth is still great, but doctors, just like it is everything else. If they have friends who have had a diagnosis or been to doctors because of memory issues, certainly I would advise the families or the people themselves to look around and ask, too.

Erin:  What did you learn on caring for your six elderly family members and your elderly neighbor?

Carol:  It’s hard to put in a nutshell. I learned a great deal from them. I learned compassion. Not that I was not a compassionate person to begin with, I guess, or I wouldn’t have done it. I really, really learned compassion for their losses. The losses that occur during the aging process I often compare to a rose losing petals. It can be gradual, but it can also in the end be devastating. Compassion is number one. Also, respect and dignity are due to elders no matter what they have wrong with them. Elders are not our children. They are adults with a legacy, and they should be treated as such.

Also, each elder is different. Even if you have two people that have the same disease, they may show different symptoms or behave differently, so it’s important to treat them uniquely.

Erin:  What made you write “Minding Our Elders”?

Carol:  I wrote my book while I was deep into…Well, there were five of my elders remaining. My whole life revolved around elder care, child rearing, and going to doctors. I did feel quite alone. I felt other people did. I began my book as a therapy and a catharsis. My dad had had brain surgery that was to correct the ill effects of a World War II brain injury. What happened was it threw him into dementia overnight. That was really the catalyst. He’s on the cover of my book. I had to work through the pain of seeing my adored dad turned into a different man by a failed surgery. From that book grew the website, blog, and all the other things I’ve done in the eldercare field.

Erin:  I’m sorry there about your dad.

Carol:  It was horrendous. I just answered a question…

Erin:  It sounds like it.

Carol:  I’m writing a column now. I wrote an answer to a woman for my next column. The same thing happened to her from surgery. She said people just don’t understand what can happen with elders in surgery. She had the same thing. It’s devastating. The medical people generally don’t want to acknowledge what happened because they’re afraid of lawsuits.

Erin:  Yes, exactly.

Carol:  So anyway, yes, it’s horrible. But that was my catalyst in that. Yes, it is on the cover of my book, and a great deal of what I write about when it comes to dementia, his was not Alzheimer’s, obviously, but I learned a great deal at a time when not too much was known.

Erin:  Can you tell me what “Minding Our Elders” is about?

Carol:  Well, the book Minding Our Elders, the subtitle is Caregivers Share Their Personal Stories, and it provides insight into family caregiving through short interviews with 20 caregivers, and it has my seven experiences with my seven elders. I set it up so that people can find the story that most reflects their own experiences, and I’ve been told by many people they keep it for bedside reading, because what they do is, they’ll go through these very short little encapsulated stories and say, wow, that’s me. And that’s one that will help keep their heads above water, because they relate to that one caregiver who is going through a similar circumstance. So, what it’s about, it’s there to support people, and it’s real stories about real people in their own words.

Erin:  When is it time to move an elderly loved one to assisted living? How do you know it’s time?

Carol:  From the elder’s standpoint, I believe it’s when they are no longer safe living on their own, or they become so isolated that their lack of socialization is affecting them mentally and physically, and they can then start showing dementia symptoms simply because they’re so isolated. The other reason would be from the caregiver standpoint. I believe it’s before the caregiver gets so burned out that he or she’s no longer capable of providing care alone. The caregiver’s own health can be compromised if the strain is too great, so assisted living or other help, I think should be sought out before this happens, and that can free a person up to be a son or a daughter rather than just constantly be doing the physical things that drain you to the point that you can’t actually interact with your loved one on a personal basis, because there’s no time.

Erin:  So, being isolated can actually cause the elderly person to first show signs of dementia?

Carol:  Oh, it can certain seethe it. They can become more paranoid. My mother‑in‑law’s an example, so she did obviously have dementia, at that time, they weren’t diagnosing Alzheimer’s as much because they knew less about how to do so, and so that was never diagnosed. When she was so isolated, even though I went every day, I fixed her lunch, I got her groceries, I did everything, she got to the point she was afraid of everything out there. I mean, people become agoraphobic, they become afraid just because they only have their own company.

And you know, even younger people, if we’re alone in our own heads too long, our thinking can go off base. So, when you take an elder who maybe is afraid of, well, reads the paper, listens to the news, starts to get afraid and has no socialization or very little, doesn’t have a reason to maybe go out of their home, I think little by little they become more withdrawn.

And depression can be a problem, and also maybe paranoia which may or may not be from dementia itself as a physical cause, but it could tip somebody over the edge if they’re, say, leaning toward dementia.

Recording:  This call is now being recorded.

Erin:  Should be on. OK, there we go, I think we’re all right now.

Carol:  Oh, OK.

Erin:  Sorry about that.

Carol:  No problem.

Erin:  What topics do you typically discuss when speaking to caregivers?

Carol:  I’m primarily a writer, but I do speaking. And I guess because I’m a writer, when I speak, I talk about the things that people ask me to write about. I speak on the pain of watching loved ones’ cognitive abilities decline, I speak about my dad’s surgery and how professionals can better work with family members to help them through the difficult times, and also how family members can help the professionals. It can become a very mutual helpful experience to work with professionals, or it can become antagonistic.

I speak and write a lot about people forging good relationships with paid caregivers who help our elders once they move to a facility or have in‑home care. It’s very, very easy for people sometimes to think they should get only one‑on‑one…You know, we all want the best for our elder, and people can unknowingly create an antagonistic relationship.

So, I speak about that, how important that is to try and work together as a team. And I speak a great deal, as I mentioned earlier, protecting the elder’s dignity, and also when it’s time to get outside help, and the other big one would be coping with siblings who won’t help, or those that criticize the help you give. Those are big questions from people, so I speak about those and many other things.

Erin:  What tips can you give caregivers on caring for someone with Alzheimer’s?

Carol:  First thing, don’t argue. An elder with Alzheimer’s is in a world that to him or her is as real as ours is to us. And if you argue with them, you’re just telling them they are wrong, and that obviously isn’t going to get us very far. If the issue isn’t vital to health or well‑being, just go along with the elder, it doesn’t hurt anything. I began doing that with my dad, because that was the only way I could keep him from being miserable. And at the time, psychiatric care was leaning in the other direction. I even had a psychiatrist yell at me for it when he found out what I was doing, that I was going along with Dad’s fantasies of life.

And within a few years, it had totally turned around and now they have what’s called the validation theory. And that seems to be the accepted theory is that you validate these people. When someone has dementia, their life is tough enough. And it doesn’t matter to us if they say the sky is green and the grass is blue. I mean, what does it matter? So, not arguing is very, very important. I mean, there are times, obviously, when we have to, or at least, try and divert them. But arguing doesn’t work.

Second, remember the person’s not a child, never will be a child. No matter how disabled he or she may become, the person should be treated with the respect and dignity of an adult.

And third, I’d say, among many, would be don’t ever assume that the person with Alzheimer’s doesn’t know what’s going on. People can be very sensitive of body language and vocal stress, even if they don’t seem to understand words. We really don’t know how much they’re taking in. And so, even if they seem totally in their own world, I always think that we should assume they understand more than we think they do.

Erin:  Absolutely. OK, can you tell me about your blog and how the stuff on your blog may be helpful to caregivers?

Carol:  My blog updates daily. And my topics cover anything from the newest studies on drugs or what may prevent Alzheimer’s or dementia or a healthy aging population, or help younger people age better and not get dementia. I cover, obviously, many issues on helping people provide care for their loved one, while trying to live a life of their own. I was a member of the sandwich generation before there was a term sandwich generation. So, I do talk about that quite a bit. I have a son with many health issues, so I was also caring for a son with health problems along with all these elders. So, I know a lot about being part of the sandwich generation.

It’s about setting boundaries and providing compassionate care. So, there is a wide range of information on the blog and it’s all centered around giving care or caring for the caregiver and the aging, in that context, there’s a great variety.

Erin:  Great. Any other relevant timely information regarding caring for seniors that you want to tell us about?

Carol:  I would say to make sure that you or someone else your elder trusts has a power of attorney for financial issues as well as a power of attorney to help make health decisions. This is vital. This document, sometimes called a health directive, should also contain a living will that hopefully, you’ve talked over with the elder so that you’re aware of the kind of care they would want, given the fact that things change and they may not be able to. But at least know their wants and needs so that you can help them if they can’t speak for themselves.

And also, I would say, never promise you love them that you won’t put them in a nursing home. Many of our elders still think of nursing homes, and there, unfortunately, are still some in the country that are the old military style and not very good. We still have far too many that are not. But a lot of them are very good, they’re coming along and realizing that hands‑on care and some of the new methods are helpful. So, that helps.

But the main thing is don’t promise that you won’t put them in a nursing home. Tell them, instead, that you’ll do your best to give them the best care possible with whatever tools are available. And just always knowing that we don’t know what’s going to occur. And so, caregivers shouldn’t have to live with the guilt of having a broken promise.

So, if we can avoid that, that’s good. One little note on that, if they’ve already made that promise, while they are care giving, they can pat themselves on the back and say they are honoring the spirit of the promise and if it should come that a nursing home is needed, they can be guilt free.

Erin:  Absolutely. All right, thank you so much for your time, I appreciate it.

Carol:  Thank you, Erin. You take care.

Erin:  You too. Bye.

Carol:  Bye bye.
Transcription by CastingWords