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Cancer Caregiver Support & Bereavement Groups with Ronni Levine, LMFT

Episode #56April 20, 2021

Cancer affects individuals, families, and communities. According to the National Cancer Institute, in 2020, an estimated 1,806,590 new cases of cancer were diagnosed in the United States and approximately 39.5% of men and women will be diagnosed with cancer at some point during their lifetimes.

The American Cancer Society conducted an 8 year study published in 2013 and found that on average cancer caregivers spent about 8 hours per day providing care. They also stated that caregivers need a strong support system, explaining that having a system of support helps to weather the storms common with cancer, like a loved one’s recurrence of cancer or death from cancer.

In this Psychology of Aging podcast episode, Ronni Levine, LMFT, facilitator of cancer caregiving support groups and cancer bereavement groups for the Cancer Foundation for New Mexico, discusses the benefits of cancer caregiver support and shares tips for getting your strong system of support in place.

Here’s a peek into my interview with Ronni Levine:

  • [06:43] The rollercoaster of living with cancer and cancer caregiving
  • [09:42] How has the COVID pandemic impacted cancer caregivers?
  • [13:34] What happens when you first get a cancer diagnosis?
  • [20:22] Do you know someone constantly in the caregiving role? Learn more about this phenomenon of serial caregiving
  • [21:56] What are the benefits of cancer support groups?
  • [27:08] What are cancer bereavement support groups?
  • [29:16] On the fence about joining a cancer caregiving support group? Learn what participating in a cancer caregiver or bereavement group is actually like.
  • [32:54] What is participating in a cancer caregiving support group actually like?
  • [36:18] How has grief and bereavement during COVID been different for cancer caregivers?
  • [40:35] How to find a cancer caregiver support group near you?

About Ronni Levine, LMFT

Rhona “Ronni” Levine has been a Licensed Marriage and Family Therapist (LMFT) since 1984 and practiced in Southern California until 2011 when she moved to Santa Fe, New Mexico. In 2013, Ronnie began working with The Cancer Foundation New Mexico to facilitate a support group for caregivers, family and friends of those who were either direct caregivers or having someone they love with cancer. In 2018, Ronni developed a grief support group for those who are grieving a cancer death.  Both of these groups fill an important niche in our mental health community.

Learn more about the Cancer Foundation for New Mexico

Learn more about cancer caregiving at the American Cancer Foundation


Ronni Levine 0:00
Cancer is an individual disease, a family disease and a community disease. We have a chart, and it's called the cancer care continuum. On this continuum, if you can imagine a roller coaster, so the caregiver, family and friends and the patient walk a parallel path, and it goes like this, you're up when the test results are good. And you're crash down with every low point in the diagnosis. And it starts with the suck, we call it the sucker punch, the day you get that diagnosis, and it goes on. And because cancer treatment has improved. Cancer is not a death sentence. But it is a chronic condition a serious chronic illness can be. And so it goes on and on and on, leading to either complete remission, which is wonderful, or death. And so if you can imagine being on that roller coaster for years,

Dr. Regina Koepp 1:15
I'm Dr. Regina Koepp. I'm a board certified clinical psychologist and I specialize with older adults and families. I created the psychology of aging podcast to answer some of the most common questions I get about aging, questions about mental health and wellness, changes in the brain like with dementia, relationships, and sex, caregiving, and even end of life. Like I say in my therapy groups, no topic is off topic, we just have to have a healthy way of talking about it. So if you're an older adult, or caring for one, you're in the right place.Let's get started.

Dr. Regina Koepp 1:53
Ronni Levine, thank you so much for coming on to the psychology of aging podcast today to talk about cancer caregiving, cancer support groups, and and cancer bereavement or bereavement groups. I think what you have to share will help so many families and people living with cancer. And so I'm delighted that you're here. We you share a little bit about who you are and what you do.

About today's guest, Ronni Levine

Ronni Levine 2:27
I would be happy to do that. First of all, thank you for inviting me, because this field is something I'm passionate about. So it gives me the chance to share my passion and hopefully help somebody else or other people. So my bio is really pretty simple. I became a I'm a marriage and family therapist. That's my license. That entitles me to do almost everything in psychology dealing with mood disorders, anxiety, families, individuals, couples. And I when I lived in Southern California, 10 years ago, we moved to Santa Fe, New Mexico 10 years ago, my practice in California was families and couples and individuals but very, not very much to do with illness at that time. And I used to call my practice teenage girls and their mothers. So when I moved to New Mexico, I was asked by a friend to volunteer in the chemo room in the infusion room at the cancer center. And I did gladly took that volunteer position. And I'm really learned a lot I learned a lot about illness and the intersection of illness and psychology and illness and emotional disorders. Then I was asked if I would like to facilitate the caregivers group and I work for the Cancer Foundation for New Mexico, which is an organization that provides psycho social services for people being treated with cancer and their families and people involved in the life of the cancer patient. So the I took over the care or took over and develop the caregivers group in 2013 and changed my practice also I practice here in Santa Fe, no more kids, no more teachers. And I see, in my private practice, I see a lot of cancer families and couples with cancer and individuals with cancer. And I also facilitate two groups. One is for caregivers, family and friends of a cancer patient. And the second group is a bereavement group for people who've lost a loved one, because of cancer. So, and I love living here in Santa Fe, I feel blessed to live here in Santa Fe, and Regina, you've been here. So you know,

Dr. Regina Koepp 5:46
We've been hiking together, which is how we met. And it's so beautiful. Yes, you meeting you and the scenery, and it was on the first day of the snow in November, it was the first snow day in November, then it was snowing on us as we were hiking. Yeah, and and the work that you do, we were hiking together. And you you mentioned to me the work that you do and it and it stuck with me. Fast forward to two plus years later when I when I reached out to, to see if you would be on the podcast. And I'm so delighted that you're here and I really admire the work you do. Working with families living with cancer is one of a very dear experience. To me, I've it's an experience that I also really value and enjoy in my practice. And in the past 10 years of the work I've been doing with older adults and family. So thank you for doing this.
The roller coaster of living with cancer and cancer caregiving

Ronni Levine 6:43
Well, I'm delighted. One of the members of our support group in our my caregiver support group, so I'm going to differentiate between the two groups says that you cannot throw a stone and not hit somebody who's been impacted by cancer, which is really a very sad commentary. And now to add to it, Regina, you can't throw a stone and not be fine. And you and not find someone who has been hasn't been impacted by COVID. Yes, right. Well, in the last year, we've had a double whammy. Cancer is an individual disease, a family disease, a community disease, the I'm going to call it the caregivers group. And the official title is together is the official name of my group. And it's we have an a chart, and it's called the cancer care continuum. On this continuum, if you can imagine a roller coaster. So the caregiver, family and friends and the patient walk a parallel path, and it goes like this, you're up when the test results are good in your crash down with every low point in the diagnosis. And it starts with the suck, we call it the sucker punch the day you get that diagnosis. And it goes on. And because cancer treatment has improved. Cancer is not a death sentence. But it is a chronic condition a serious chronic illness can be and so it goes on and on and on, leading to either complete remission, which is wonderful, or death. And so if you can imagine being on that roller coaster for years, right?

Ronni Levine 8:55
What I have found is that in every family, in every situation, there are existing patterns that how people relate. Cancer, so adds another layer, because now the week a family relates or a couple relates is impacted by that diagnosis. Yeah, and this year, the next layer is COVID. Right. So this year, it's become multi layered. And COVID has changed things and magnified things.

How has COVID impacted Cancer Caregivers?

Dr. Regina Koepp 9:38
Say more about that. How has COVID changed and magnified things?

Ronni Levine 9:42
Well, I was thinking about that. Okay for all of us. COVID has changed our lives. Wouldn't you agree with

Dr. Regina Koepp 9:53
100%? Yeah, my life. Yeah, I have had a lot of changes since COVID.

Ronni Levine 10:00
It has magnified and changed multiple aspects in our lives. For family grant or a couple grappling with cancer, what has happened is, it's in, okay, let's talk about increased isolation. The caregiver is afraid to go out, because they don't want to bring something back, putting COVID back to an already immune suppressed person. So the isolation for a caregiver has been excruciating. As far as our groups we couldn't we don't meet in person we haven't met in person since March, we meet on a zoom platform for both. And we're probably not going it's in determining when we're going to meet in person again, for some of the caregivers and people in the bereavement group. The Zoom call is their main social outlet. And each group meets once a week. So there's the lack of physical contact, the inability to see fam other family members and friends, boredom, being cooped up all day. But I would say the biggest hardship has been social isolation, because that's not a normal, normal stage for a human. Right. The other way, if they've been impacted is family members and caregivers can't go into the treatment can't go to doctor's appointments, can't go into the treatment or infusion room. And oftentimes, infusion is six to eight hours. And the family member can't go. And it's lonely. It's just has increased loneliness, which already was a factor in the cancer journey.

Dr. Regina Koepp 12:18
Thank you for saying that. So how are families getting through it?

Ronni Levine 12:23
Well, there's the practical and there's the emotional. So the practical is they order groceries, the groceries are delivered. They sit in the parking lot and wait for infusion to be finished, especially if they come from out of town. It's boring for the patient. getting treatment and the impact on the nurses has been and doctors has been enormous because the nurses had the US as volunteers. That's my other half. And we we picked up a lot of slack that work they didn't do like cleaning chairs and just being friendly and nice and being providing a source of relief if we're not there. So everybody has had to dig deep to adjust.

Dr. Regina Koepp 13:28
Golly, yeah. So it's back to your point about cancer being a community illness?

What happens when you first get a cancer diagnosis?

Ronni Levine 13:34
Absolutely. I would say that when a person gets a patient and the family have a the sucker punch, the learning curve is enormous like this. A frequent remark that caregivers say, I was never trained for this. I wasn't trained, even people who are nurses and doctors say I wasn't trained for this because they weren't trained for the emotional part of caregiving. Right. So the learning curve is enormous. And with that comes increased anxiety, and depression. In fact, there's a wonderful, I'm going to read this to you. There's a wonderful series I use, it's called the seven deadly emotions of caregiving. And these are the seven deadly emotions, guilt, guilt, resentment, anger, worry, loneliness, and defensiveness. And now we could add another one isolation. Yeah. And The intensity and the level of anxiety and depression really does correlate with the stage of cancer. Because there's four as you know, four stages. So if it's stage one, it's usually something that can be remedied by surgery, and maybe a brief treatment. And then usually people go into remission. If it's stage four, that means metastatic. That means it spread to other organs and the lymph nodes and people and the treatment is long and hard. And it's in very complex.

Dr. Regina Koepp 15:53
And you're saying that the mental health concerns correlate with the stage?

Ronni Levine 16:00
I yeah, I would say that. But you, you would ask me do mental health concerns there? It doesn't matter what type of cancer it is. So to join the support group, No, it doesn't. People help all varying types of cancer

Dr. Regina Koepp 16:18
...and different stages and different stages. So to be in your Cancer Support Group, a person could have prostate cancer, breast cancer, pancreatic cancer,

Ronni Levine 16:28
The caregiver of the person with cancer, or a friend, because we also have cancer support groups. We have support groups for the cancer patient too.

Dr. Regina Koepp 16:38
Great, right. Thank you for that clarification. So for the caregiver, the caregiver can be caring for a loved one or friend and family for a loved one with any type of cancer, any stage of cancer. When you were talking about the mental health symptom, correlating with the stage of cancer was that for the caregiver, or the person living with cancer,

Ronni Levine 16:57
Both. Remember what I said that the caregiver and the patient walk a parallel path. But the needs are different. And the concerns are different. And sometimes the caregiver needs more emotional support than the patient because the patient is getting a lot of support from the medical community. And and we have found that often the caregiver gets left behind nobody, I mean, their needs become secondary, which is a huge problem in the mental health and physical health of the caregiver, now.

Dr. Regina Koepp 17:45
So the caregiver and the person living with cancer are walking a parallel path, the person living with cancer might experience more supports from the medical community. And we often describe caregivers as the invisible patient.

Ronni Levine 18:02

Dr. Regina Koepp 18:05
And your groups are providing bolstering and support for them. Along that parallel path for you described a the sucker punch of getting an initial cancer diagnosis and just knocks the wind out of you. It's startling, it can be traumatic. And so there's the sucker punch of a cancer diagnosis. And then you describe the cancer journey as tumultuous like a roller coaster, you might have a high you're you're getting better, we're noticing a shrinkage of the tumor. And then oh, all of a sudden, no, you're on a low again, because we're not seeing the progress we anticipated. And so what are some of the so those are some of the common experiences after a cancer diagnosis. And then the steep learning curve of what what is this cancer diagnosis mean? What do all the stages mean? How likely Am I What is my prognosis? What is the prognosis anyway?

Ronni Levine 19:06
What is the plan what are the side effects of the treatment plan? How? And if you take the thread and stretch it out, what's the impact on the family's financial situation? What if it's the bread, the main breadwinner, who's becomes ill? What's the impact on the duties all of a sudden? A lot of duties that are shared shift over to the caregiver. What are the impacts on family dynamics? Especially if there were already some difficulties in family dynamics? So it's, it stretches out if you can picture ripples in a light?

Dr. Regina Koepp 19:57
Yes, yeah. And one one thing that I would notice with folks that I was working with with cancer or families living with cancer was also what is our past family experience with cancer? So who else in our family has had cancer? And what was that experience? Like? And are we pulling up all of that history when we get diagnosed with a cancer diagnosis? Do you notice that as well?

Do you know a person who's constantly in a caregiver role?

Ronni Levine 20:22
Yes. And what I have found with some caregivers that have been in our group, or our in our group, is that they, they are not new to the game. They're they've taken care of a mother, brother, sister, other family member, loved one friend. And now this.

Dr. Regina Koepp 20:44
Yeah, there's a term in the field called serial caregivers, the person always finding herself in the role of caregiving.

Ronni Levine 20:53
And there's a tendency to start to believe nobody can do this. But me and that is a really, that just increases isolation and fatigue and opens oneself to illness.

Dr. Regina Koepp 21:11
Well, now that you've mentioned that nobody else can do this, but me, nobody can do it, as well as I can do it. Nobody will care as well as I can care. I'm so skilled at this, I've been perfecting it for from relationship to relationship. And maybe that is true. So now to the groups because if we're talking about high rates of isolation and loneliness for folks, families living with cancer, because of the fear of exposure to COVID, that's even more elevated now, because the person living with cancer is immunocompromised, and the caregiver doesn't want to bring anything to them. There's more isolation and loneliness for these families. And so then tell us about the benefits of support groups, then?

What are the benefits of cancer support groups?

Ronni Levine 21:56
Well, there are two I call them the, that's I'm going to separate them separate them out because the needs are different between caregiving and bereavement. Yes. Um, in the caregivers group, I say there are two pillars that hold up our roof. One is the need for self care. And two, this is so important and so hard to, to communicate the need for a team, we call it build a team. And the definition of a team is not some, it could be Pete made up with people who are there consistently. But it might be a person on the team, who was just there for one or two, to meet one or two needs. So there's a person in my group who always says you choose the right person for the right job. So if it's driving, then you need someone who's a good driver with a reliable car. If it's cooking, then you need someone who knows how to cook. If it's delivering supplies, you know, so you, the caregiver, and the patient, as a tip, choose your team members wisely.

Dr. Regina Koepp 23:26
And tell us more about the team. So what what did the teams look like? Or what are they comprised of?

Ronni Levine 23:32
They're very often comprised of, well, family and friends, or professionals in the community. So the support group members are part of the team to each other. I'm part of their team. The sometimes people you think are going to step up, don't because they're afraid or have their own issues. And sometimes out of the blue, a person you never thought would help steps up. But nobody's going to help. If you don't ask. And that's been a big obstacle with the care with the group with people in the group. not asking and no frequently say, Oh, well, it's so hard for me to ask for help. I never asked for help. That's just not something I do. And we, the other team members or the other support group members will say, well, that's really important, and they'll encourage a new member to change that point of view.

Dr. Regina Koepp 24:42
What do you find helps the most with changing that perspective around help seeking?

Ronni Levine 24:47
Well, I think hearing from other people who have been dealing with this since we're dealing with cancer, for a lot longer time than someone who's brand new helps. And that's where a support group comes in. Because that's educational sharing, sharing experiences. And what was the question? What is the obstacle to doing that?

Dr. Regina Koepp 25:17
Or what do you think helps to shift the caregiver's perspective around asking for help?

Ronni Levine 25:23
Hearing other people's experiences. And unfortunately, Regina, the caregivers own demise, the caregivers own physical health, the caregiver giving up, you know, hitting bottom, and we don't want that to happen. So we try and offer that safety net to support group is a safety net before that happens.

Dr. Regina Koepp 25:51
And how long do your groups tend to last?

Ronni Levine 25:55
an hour and a half? once a week, to caregivers once a week bereavement once a week?

Dr. Regina Koepp 26:03
Can people stay in the groups as long as many months or weeks as they want?

Ronni Levine 26:08
They can stay as long as they want. I am so flexible. They can come late, leave early, come when they can stay as long as they want. Because cancer doesn't follow a predictable pattern. And the group's shouldn't be rigid. And that's what I you know, you say what have we needed to deal with COVID. Flexibility, resilience. Yeah, humor and shifting expectations. And for that reason, a lot of people dealing with cancer already had those skills, if you will, built in. They already knew how to do all that. Now they're doing it more with the rest of the world.

Dr. Regina Koepp 26:58
Yeah, they were already figuring out how to get over through one Sucker Punch. Yeah. And now now they got another with COVID.

What are cancer bereavement support groups?

Ronni Levine 27:08
And the way the bereavement groups started, was, so there's these people in caregivers, their loved one dies. They still needed support. They kept coming to caregivers group. Yeah. But their needs were different. And they didn't have a home. That's what I call it. So they didn't have a home. So I developed the bereavement group to give people mainly transitioning, but now it's expanded a home.

Dr. Regina Koepp 27:45
And that so is it fair to say that the people who started in the caregiver support group if their loved one dies? They would then transition into the bereavement group?

Ronni Levine 27:59
Yes, they that was one source, but now people who never in the caregivers group are also joining us. Usually in each group, I usually have, I would say at least 10 people, which is quite that's quite a large group.

Dr. Regina Koepp 28:18
Is it a combination of men and women?

Ronni Levine 28:21
It is I would say there's Yeah, there's more women. And I would say they they're older. But Regina having been to Santa Fe, the population of Santa Fe is an older population. Um, I and even though we are open to anybody over 18, no children. It's mainly an older population.

Dr. Regina Koepp 28:47
When you say older, what age groups are we...

Ronni Levine 28:51
Well, bereavement is definitely people in their older age, except for a couple members of I'll mention them, definitely people in their 50s 60s and 70s. And it's usually the loss of a spouse. However, I have two members who are one members in her 30s and one in her early 50s who's lost a parent. So there is that also.

What is participating in a cancer caregiving support group actually like?

Dr. Regina Koepp 29:16
So just to help listeners who might be on the fence, maybe are shy around a group, I have worked with a lot of people who will say I'll talk to a therapist individually, but I will not go to a group. So can you speak a little bit about what it's actually like for people to participate in a support group, like the ones that you offer and are like the caregiver support group that you offer, just to kind of maybe expose people a little bit and maybe kind of give them information so that they're less cautious, maybe more willing to give it a try. What is it actually like?

Ronni Levine 29:52
That's a great question. It's important to differentiate a support group from therapy. Because I am a therapist, all of our groups for the Cancer Foundation are professionally led. But therapy is more laser focused. And a support group is more global. So as support group, the members really are the center, therapists in the support group. They are loved, the members are loving, welcoming, caring, they provide education, sharing experiences, in a very safe, and that's my job, very safe, confidential atmosphere. And that's why it's important, in my opinion, to have professionally lead groups, who knew know how to encapsulate the experience and make it a good experience for everyone. So that everyone has an opportunity to share. But if you come to a support, if one comes to a support group, they don't have to talk. They can just listen, I give them the opportunity. Crying is very acceptable. We always have a couple boxes of Kleenex and loving and caring, and embracing. I think it's important for members to feel those qualities are there to hold them. That's not just my philosophy. I think all of our facilitators share that.

Dr. Regina Koepp 31:47
Well, yeah, you mentioned, even the bereavement group folks needing a home. And what you're describing in your support groups is a sense of belonging, a sense of comfort, a sense of security. And that's what home should feel like.

Ronni Levine 32:04
Yeah, this sense of this person in the group knows my experience, it's very often they have used the term my tribe. This is my tribe. These are my people, because they're sharing a similar, they're walking in each other's shoes.

Dr. Regina Koepp 32:26
Now I have this image in my head of - you were describing the person living with cancer and their caregiver walking on the same path- And now in my head, it's just expanded to more people walking alongside of them in support of them, so so they're less alone? Um, what are some of the barriers you see to people joining the group? And any thoughts about how to help people kind of move past those barriers?

What are barriers to joining a cancer caregiver support group or bereavement group? How to move past the barriers and get the support you need?

Ronni Levine 32:54
Barriers? Do you mentioned one before I, especially with caregivers, um, I'll tell you the barrier for each group. One is I can do this. I don't need help. I don't need help. Because I'm not the one with cancer. Why are my needs important? That's a huge barrier. I don't have the time. Now, zoom has definitely improved that because they don't have to drive to a location. I don't have the time. I'm too busy. I'm, it's not important for me to get help. In the bereavement group. It's usually nobody will understand. Why aren't I over this yet? I hear that a lot. And, and as you know, with bereavement, it's not something you get over like a bridge. It's something that grief is something one incorporates into their life. But it doesn't leave them It changes them. But people heal with this now as part of their life. And I've got a really good model for that, too. It's called an oscillating model, which means some days I feel good and some days I feel bad. That's true of both situations.

Dr. Regina Koepp 34:20
Yes, yeah. Because in cancer caregiving, there's a lot of grief that happens to anticipatory grief, ambiguous loss.

Ronni Levine 34:28
Yes, and the person who's now in bereavement or in encountering birth is exhausted, they are exhausted and the losses and just the death of the person. The loss came when the person got diagnosed with cancer. And as I said, loss of social status, economic status. I identity you know, and that's a big deal. That's a big factor. comes up in the bereavement group. I was one somebodies wife, I was one somebody's husband. I was one somebodies child. Who am I now? Right? My identity, what's my course of life for the next x years? What do I do? Yeah,

Dr. Regina Koepp 35:21
that's so powerful example that just rose into my mind's working with the spousal caregiver of wife and her husband died. And remember, we were have bereavement therapy sessions, not a support group. And she would ask, how long do I wear my wedding ring? You know, when do I take it off? When am I no longer married?

Ronni Levine 35:44
And those are factors and questions that come up within the group. And the group members are the ones who supply the answers. I tell them, I feel more like a traffic police officer, you know, making sure everybody gets to talk and making sure decorum is maintain politeness graciousness. And most of time, I don't even you know, I set the tone. And they're all lovely with each other.

How has grief and bereavement during COVID been different for cancer caregivers?

Dr. Regina Koepp 36:18
Yeah, that's been my experience of groups, too. Now tell us about bereavement during COVID. So that's been quite a challenging experience for many families experiencing bereavement during COVID. Because our traditional styles of grieving and mourning are not afforded to us right now. We can't have large funerals, we can't have so many people in person, we can't have so many visitors. Can you talk a little bit about the bereavement experience?

Ronni Levine 36:54
Well, let's just start with something as elem... not Elementary in stature... but Elementary, the funeral. So many of the people in my support group have had zoom memorial services. And imagine that I mean that you want to hug them, what do you do when you go to a funeral, or memorial service or celebration of life, you want to hug, that's human nature. And they've been doing it on zoom, or else one person in my group rented a large hall. So people could be appropriately distance, invited limited people. So everybody couldn't be there that she would have liked. And they couldn't hug. And I would say COVID has produced a less than satisfying experience for human for us, as we as humans, needing to fulfill natural human needs, and reactions. It's been so difficult.

Dr. Regina Koepp 38:12
And it's so healing to be with people when we're suffering. And it's so necessary. It's part of how we endure. And it's, we can't have it, it's just another loss. It's, you know, it strikes me as another loss. It's and disenfranchised grief. So you can't grieve and mourn fully. It feels like sometimes...

Ronni Levine 38:36
...which only enhances the need for the support group, which has made that support group even more central to the members in my group's life.

Dr. Regina Koepp 38:49
Yeah, yeah, I agree. Now, now, let's get to some nuts and bolts. So so you're offering these groups as part of the New Mexico Cancer Foundation?

Ronni Levine 39:03
Yeah. Cancer Foundation for New Mexico.

Dr. Regina Koepp 39:07
Thank you. And is that do people have to pay for them?

Ronni Levine 39:12
This is the beauty of that organization. These groups here are free of charge. Their people can come as I said the flat they have the flexibility in attendance. And in New Mexico, we're especially northern New Mexico, which is where we are. There's a wide disparity in incomes here. And cancer and bereavement are the great levelers. And here that eliminated eliminating the need to pay eliminates one reason not to come. Its free of charge. The organization's a nonprofit

Dr. Regina Koepp 40:00
Wonderful. So when it's a free of charge group, like the ones that you offer, it eliminates the barrier of I can't afford it. Exactly the financial barrier. And so it allows for anybody, regardless of income,

Ronni Levine 40:16
regardless of income status, there are no barriers to attend. We have one barrier, it has to revolve around cancer.

Dr. Regina Koepp 40:26
Yes, that's a criteria. Right? And that makes sense. It's the Cancer Foundation for New Mexico.

Ronni Levine 40:32

How to find a cancer caregiver support group near you?

Dr. Regina Koepp 40:35
And so if for people not living in New Mexico, who are interested in a cancer caregiver support group or a bereavement support group for having a grieving a loved one or grieving a loved one who's died to cancer? How would you recommend people go about finding support near them?

Ronni Levine 40:53
Um, well, the most obvious is use your computer, Google it. And that's how a lot of people find our group. Second is through if you're belong to a religious organization, then ask your religious leader ask at the hospital or treatment center where your loved one is being treated. They have usually every Center has at least one if not multiple social workers who have their fingers in every pot and know where these groups are. They're a social worker in a treatment center is invaluable. That's another way... friends, family, word of mouth.

Dr. Regina Koepp 41:46
I've worked at the Atlanta VA healthcare system for many years, and we had a couple of cancer support groups and fewer caregiver groups. And we would often refer to a local Cancer Center. So the Winship Cancer Center in Atlanta, which is the biggest connected to Emory. But we were offered free groups for any community member, even if you weren't being treated there. And so your recommendation to Google and I would say, many of the Cancer Foundation organizations like leukemia, Lymphoma Society, or breast cancer, also have a support group link or Support link often on their website as well. So your point about googling and, and looking for a reputable source like that, that has some Just so you know, you're getting hopefully like professional mediator as our facilitator.

Ronni Levine 42:41
Can I say something about that? I don't want to sound like I'm tooting my own horn.

Dr. Regina Koepp 42:47
Toot away, Ronni, I think you've earned it. I think you've earned the toot.

Ronni Levine 42:52
I'm not as confident about leaderless groups or non professionally led groups, although I can say you know, AA does a wonderful job and Al-anon wonderful job. For this issue. I think a professionally led group is important, because it's important to have someone who knows how to manage the emotional charg-edness of the situation. And I that's what comes with a trained professional.

Dr. Regina Koepp 43:35
I agree.

Ronni Levine 43:36

Dr. Regina Koepp 43:39
There is intense emotionality and grief is can be messy. And even though there's a distinction between your caregiver support group and your bereavement group, there is grieving throughout the process you describe grieving at the point of diagnosis.

Ronni Levine 43:54
Absolutely, loss starts there. Can I say this, Regina, even if it's a stage one diagnosis, and the odds of complete, not cure, but complete remission for years. There still is a you've lost a sense of ill innocence and confidence. They're still there, little cancer ghost working back there. So loss does start with the diagnosis. support groups and individual therapy go very nicely. I have people in my support groups who are have individual therapists. I think they lend they add another supportive layer. And often I know I can refer people to a therapist or a therapist refer people to my support groups. And it's the facilitators job my job to make maintain the health of the group, the vitality of the group and I take that mission extremely seriously.

Dr. Regina Koepp 45:11
I see that. I so value the work that you do. It's so it's so important. Even before COVID, it was important and it's doubly important during COVID with increased isolation and loneliness for folks, and fear and uncertainty,

Ronni Levine 45:30
... and which are all which are all aspects of a cancer diagnosis or long term illness. everything you just said about COVID has already been there in the mix. And now it's magnified. And it has created a very dramatic experience. Yeah, yeah.

Dr. Regina Koepp 45:58
And then to your point about the bereavement groups just to tie that in about, you know, folks are experiencing disenfranchised grief in a way that we never have before with COVID precautions and your support group is offering a place for people to be able to mourn and grieve in a shared space.

Dr. Regina Koepp 46:20
Ronnie, I so appreciate your taking the time to share with us all of these resources.

Ronni Levine 46:25
I really welcome the opportunity to talk to you and share something that is very, very important to me. And I want others to know that there are resources out there. They don't have to be alone.

Dr. Regina Koepp 46:45
Yes, thank you.

Ronni Levine 46:46
You're welcome.

Dr. Regina Koepp 46:48
That's all for today. Now it's your turn. All you have to do is subscribe, leave a review and share this episode with others so that they can be part of the conversation, too. One last thing, a special thanks to Jasmine Joyner, our psychology of aging podcast intern for all you do. Lots of love to you and your family. Bye for now.

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