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July is Sandwich Generation Month!
Join us as Griswold’s Chris Kelly, M. Ed, offers a more holistic perspective on the Sandwich Generation – those that care for their parents as well as their own children. Also discussed are issues facing the three generations involved, and practical strategies and tools for planning and transitioning during this time.
The workshop features four parts:
Step 1: Provide a new, more holistic perspective on the Sandwich Generation dynamic
Step 2: Present current needs, drivers and barriers for young adult children, family caregivers, and grandparents
Step 3: Share practical strategies for driving cross-generational empathy, understanding, and communication
Step 4: Present a Family Solutions toolkit that drives effective planning and transition.
Derek: Good afternoon everybody welcome to Griswold Home Care’s Solution Series webinar titled The Sandwich Generation: A Time of Family Transition and Reinvention. I want to welcome all of our briefly our panelists and organizers here. In Philadelphia we have Kelly Howard and Paige Flanagan. I’m Derek Jones. We also have sitting to my right Chris Kelly and all the way down in just outside of Atlanta, Georgia we also have on the call Belena Butler] who will be joining us as a co-panelist for this call.
I wanted to go over a couple of housekeeping items. All lines are muted we will allow question and answers during the entire call. You can enter information into the go to webinar panel, and we will take formal questions and answers at the end of the webinar. After the webinar the recording will be posted on Griswold Home Care’s blog at Griswoldhomecare.com/blog and the transcripts will be made available within five business days.
So July is National Sandwich Generation month. This is a month at Griswold every month every month certainly celebrates. It is an annual month of commemoration celebrating the courageous individuals their dedication, patience adults who are taking care of their parents and also taking care of their own lives and our sandwiched between these two competing priorities. Again we’re also really welcome Belena Butler with Caring Support and Solutions who’s just provided a great quote which we think summarizes the essence of National Sandwich Generation month.
Caring Support and Solutions their purpose is to provide services to all who care. They work with families, caregivers, medical practices, community providers, and most importantly health care consumers. They specialize in providing innovative caring support to meet the specific needs of clients and anyone involved in the caring process certainly a great support for the Sandwich Generation.
And for those of you on the call maybe you’re listening live or you were listening to the recorded version we want to thank you for attending. A stat from AARP that came out last summer is alludes to that the average adult child will spend 18 years of their life taking care of their kids. In 19 years of their life taking care of directly or arranging care for their parents. So if you think you’re an empty nester after the kids have gone to college it’s not over yet.
And for all those other individuals who are helping support the Sandwich Generation healthcare provider’s professional caregivers who are directly supporting those in need. Family caregivers who courageously sacrifice their lives and really have to balance very tricky situations to take care of family members. And those who if you’re a client yourself maybe you’re receiving care and you’re living in the Sandwich Generation. So we thank you for your courage, energy, and dedication. And in essence of Sandwich Generation month we want to acknowledge everyone involved for your support during this month.
Our goal for today’s webinar we have a fantastic lineup. We’re going to validate all of the issues and challenges that multigenerational families face. And the essence of the solution series webinar is that we will provide tools that drive planning, healthy transition, and positive outcomes for those who are living in a Sandwich Generation.
There are a lot of great webinar series out there today the Griswold Solution Series really focuses on giving tools to anyone who is attending this webinar. So tomorrow you will have additional tools to help you support living a life in the Sandwich Generation.
With that we have two fantastic co-presenters today. We’d first like to generally introduce and then have Belena Butler from Caring Support and Solutions introduce herself but a bit of background on Belena. Belena has been a nurse for over 15 years; she is a graduate of Drexler University based out of Pennsylvania here. And we actually first came in touch with Belena she had seen a blog that Chris Kelly had written and that really spoke to Belena. Not only is Belena living in the Sandwich Generation she also her career is supporting those families and older adults in the Sandwich Generation.
So with that also Belena has been caring for her mother for over a decade so is not only supporting individuals but is a member of the Sandwich Generation. So with that Belena welcome to the call and a welcome for you to introduce yourself further.
Belena: Thank you thank you so much. Well a little bit you pretty much said a lot about me but I will say on the professional side I’ve benefitted from a lot of the tools and the resources out there that are available to those in the Sandwich Generation. and it’s just been very helpful and it’s drove me to be the person that I am. I mean I call myself a care specialist because I wear many hats. So being a case manager and being an advocate for people getting the care they need is a passion for myself so I’m really honored to be on the call thank you so much.
Derek: Great thanks Belena. We’d like to introduce our next co-panelist Chris Kelly. Chris leads all training programs courageously leads all our new owners as they enter the market, supports training and support for all coordinators across the entire chain, and also is the top contributor to all the educational content on Griswold Homecare’s Blog. So Chris welcome to the webinar.
Chris: Great thanks, Derek. Good afternoon everyone. I’m really excited I know how very important this topic is. I’ve worked in the healthcare industry for about 25 years providing direct care advocacy, heath education, and really had the fortune to work directly with many Sandwich Generation families during my time as a rec therapist in long term care. And my time as director of education with the Alzheimer’s Association. And I just want to echo Derek’s sentiment around how fortunate we are to have Belena with us to bring her both professional and personal experiences with the Sandwich Generation.
So to start we wanted to talk a little bit about what we think is a really unique process for identifying our theme, our title, our content the tools that we’ll go though. We call this the solutions mining methodology that. The solutions term really emphasizes that we want to focus on providing tools and solutions for challenges versus offering a lot of reading and searching we want to make sure that we’re bringing those tools to you.
We have four major layers of our research process I’ll walk through them briefly. The first is a literature review we’ll review books, peer review journal articles. And for this particular blog and webinar we review research that had a sample size of 10,000 family caregivers, professional caregivers, young adult children, and grandparents so very reliable.
Through that process we identify them in this case the idea of family transition and reinvention. We then go to social media, Facebook, discussion boards, blogs, and the idea here is we want to make sure that we’re validating a theme that we found through our literature review. So in this case we reviewed 500 different verbatim quotes that we’ll show you throughout the presentation.
The next step is really to reach out to advocacy organizations and this is where Belena was very helpful to say okay here’s what we found is this current? Is it relevant? Is it accurate? And again as has happened in past months Belena really felt the topic was important and she’ll talk a little bit more about that.
And then finally and this is where you come in our solutions webinar and toolkit. As we’ll talk about in a minute this process is unique in that you have an opportunity throughout the webinar to actually contribute your thoughts, your experiences so we have an opportunity to learn from you.
So we call that activity brain writing so you see here obviously we’re trying to have fun and make it engaging do something different. On the right-hand side of this slide here you’ll see a graphic you have a chat bar. If you see at the very top that you should have an orange icon with a right arrow. If you click on that arrow that tool will show and you can go right into the chat bar throughout the presentation and share your experiences any tools that have worked for you, any stories that you’d like to share. And then as Derek mentioned these are shared back to you the audience at the end of the close of the webinar. So it’s a great opportunity to have two-way learning between all of us and all of you.
So let’s start with just some history about the Sandwich Generation. We did some research and we found in the Oxford Journal the first time the term was used was in 1981. It was coined by a social worker by the name of Dorothy Miller professor and director of practicum at the University of Kentucky. And I’ll read the definition Sandwich Generation is the segment of the middle age generation that provides support to both young and older family members yet does not receive reciprocal support in exchange.
And when I read this definition obviously I think Dorothy is a pioneer and the idea of the term has been very influential. But if you look at the time that has gone by, it may not be an accurate statement. In many cases both the young adult child and the grandparents are highly involved in supporting the dual caregiver.
So this led us to this idea of instead of solely focusing on the family caregiver which we most researchers have typically done. We want to take a look at the entire family system and really have a better understanding of the issues and needs of all three layers of the family.
So when we say three layers we’re looking at really three generations. We have the children, dual caregivers which is a newer term that captures the idea that you have a typically someone in midlife that is caring for both children and an aging parent. And then you have the late life transition which would be someone an older adult who is a grandparent.
In terms of the quarter life transition as I said it’s a new term tends to be a younger adult in their 20’s but as Belena will talk about in a few minutes there also could a wide age range. There could be a child that’s 11 or 12 years old so we’re going to focus mostly on the insights with the young adults but just wanted to make sure that we recognized that there is an age range and it could be a younger child.
From the standpoint of the dual caregiver again very well documented and we’re going to share the insights it’s a very common challenge to really support children and an aging parent. And then we also wanted to note that even though the aging parent is often noted as the care recipient that in many cases through our research we found that they also in many cases could be dual caregivers. So they might be caregiving for both their child and grandchildren.
So the basic message here is we wanted to take a unique holistic perspective an aerial view let’s say of the family and better understand the needs of all three units and generations thinking that that would improve outcomes really for all involved. So we’re going to start by looking through our research and literature review in terms of the insights for dual caregivers again a relatively new term. Again if you are a professional caregiver and also a dual caregiver Belena shared yesterday that the term for that is tri- caregiver so I wanted to call that out as well. But I wanted to focus on the dual caregiver and this idea of a midlife transition.
So our first article though the literature review really this came from a quote from an article called Bright Horizons and it really stood out to me from a research standpoint and I’ll read it. “When a child or family member needs care and there is no one but you that can give it, it is impossible to focus on work. The stress and worry about caring for your child or the elder who needs care is all consuming.”
I know for me just again from working with many different families the word that jumped out for me here is all consuming. Just the overwhelming nature of trying to care for yourself while also caring for an aging parent and also children. Belena I know you’re living this today when you read this quote what insights jump out the most for you?
Belena: Well Chris pretty much I mean I’m going to kind of because I wear both hats I’ll go on both sides. First I want to talk about from a professional side many of my clients fall into this category. They are under an unbelievable amount of stress and concern about like many things like how they would be viewed when they are in an employment situation or even with people that they socialize with. And so that’s like one of their stresses and also how are they going to get everything done and that kind of goes along with all consuming.
For me, personally, the worry was like one of my biggest aspects that I had to deal with because being a nurse working those long shifts, and worrying about how my mom was going to be taken care of I had to rely on a lot of tools and I know we’re going to go over a lot of them later on.
But I had to use a lot of resources and tools in order for me to alleviate that worry that I had from her making sure she was safe, making sure she was taking her medication, making sure she had everything she needed to get through the day. And not to mention the social aspects because being a lot of caregivers worry about them being socialized and get out we get the things that we kind of take for granted and we’re going back and forth. When you’re disabled you don’t have that opportunity to do that. And just it’s not just them but I also worry about it as well because it’s a very important part of life.
Chris: Yeah great insights and we’re going to stop throughout the presentation and allow really all of us to benefit from both professional and personal experiences. So some of the things the Belena talked about we’ll touch on now in the next slide. This is basically a summary of what I would call core insights. Obviously when you read when you review 10-12 articles there are so many insights. What we try to do here is identify the ones that rose to the top the most and we’ll start from the top and move left.
The first one is this idea that you need to adjust in you and shifting family roles as children and parents age. I think this is a really powerful insight in that if you’re a parent, if you’re the dual caregiver you’ve had a certain relationship with your child since they were born and it really becomes a big part of your identity.
And as your children get older I know I still do a double take when my 21 year old daughter drives out of the rolls back out the car out of the driveway it’s just not a natural thing so there’s a definite shift.
And same way for the dual caregiver when they are looking at their aging parent who at most of their younger life took care of them. And now there is the role change where they are having to take care of their parent.
Belena: And Chris can I say something to that?
Belena: That by far and that’s one of my [inaudible 00:16:48] by far is one of the most psychological aspects. A lot of people deal with the changes and a lot of psychological things that you go through as a caregiver. But that one right there you’re just not used to, and then also you mourn for that person. And so there is a grieving, there is a mourning, and then there is also a shift in exactly the roles because you’re now supporting the mother or the father so to speak.
And you’re taking care of them and it’s very frustrating and you’re sad because they’re still going to be times no matter what age you are you want to call upon your mother you want to call upon your father. And then you kind of the reality hits you sometimes depending on the situation that you can’t do that.
Chris: Absolutely great feedback. Moving down to the right another key insight was just this idea of feeling overwhelmed and exhausted. I cannot tell you how many times the word exhausted surfaced really across all of our different research layers. And the exhaustion seems to be just the balance of the caregiver role and then many people at that like place are still working and want to maintain careers and sometimes expand their careers. So it’s quite difficult to manage that just the pure fatigue.
The next two to me are very much related and somewhat a push and pull. Number one the desire at this point to focus on yourself you in many cases raised your children the idea that they are graduating college and will live on their own so you start to think a little bit about yourself. But at the same time because you’re supporting children and an aging parent you find that there are little time to focus on yourself. So it’s a definite dynamic that is challenging that can lead to the anxiety and depression that we saw very commonly through our research we talked about work pressures.
Financial pressures are significant I know that there was a great report from the Pew Internet Foundation that we’ll talk about later that really captured. Really in today’s work the fact that most dual caregivers are still supporting their the younger adult children but also in some cases support the aging parent financially.
Interestingly at this point many people noted that they started to lament their own signs of aging and started to think about their own mortality which I think again drives this idea of wanting to focus a little bit more on yourself.
But as Belena had shared with us yesterday you feel the need to reinvent yourself given all these role changes. But when you think about shifting to these new roles there tends to be a lot of guilt and grief. And Belena you can speak to that if you’d like.
Belena: Yes because I call it the push and pull situation where you’re pushing to get things done and to manage everything. But then and then you have other people whether it’s external situation like work or people pulling you in another direction. And sometimes I just feel and I know that there has to be a balance and you just can’t get everything done. And like for my daughter she’s full aged and it’s really sometimes I want to do more with her but I’m just exhausted as you just stated. By the end of the day I’m just too tired to get everything done and give her time that she deserves and I feel so guilty about that.
Like I said I’ve started to use tools and different things, and even though they have helped me the guilt is still there because I know that I did not give her all that I would like to give.
And the same thing for my mom sometimes when I’m living a busy life I mean I want to take her out for a walk or I want to take her shopping, or do little things that we normally used to enjoy. I just I don’t have the time because now I’m a working adult and I have to go to work and she sits home and I feel guilty when I walk out the door because I want to do more for her and it’s very frustrating sometimes.
Chris: Thanks so much and so I know it’s probably difficult to bring all this up Belena and I really appreciate the depth of your sharing with us really appreciate it. It really brings all of this to life.
Belena: You’re welcome and that’s what helps me to connect with my clients, I’m sorry. It helps me to connect with my clients because I understand what they are going through and I think it’s more of an emotional thing that we connect in that way.
Belena: And so the desire to focus on self kind of also drives that guilt because at times I need to do stuff for myself otherwise I’m going to get burned out and I’m not going to be able to take care of anybody. So I do that and it gets easier but the guilt is still there even after 15 years.
Chris: Sure, sure. So what I’d like to do now is from a brain writing standpoint for those of you in the audience particularly dual caregivers would love to hear your perspectives if you look at all of the insights that we’ve shared and the great stories that we’ve heard from Belena.
If you could again click on the orange icon with the white arrow go into the chat bar and we would love to hear out of the things that we’ve shared here which ones resonate the most with you? Are there any things that we’ve shared that are there any things that we’ve missed on the list that you’d like to add and just any other experiences that would help us all learn from you?
So the next segment we’re going to dissect will be the adult child or the child. And again this newer term quarter life transition really jumps out. There is actually very little research just from having done the research for this webinar and blog relating to the insights of the children. Most research is done on the family caregivers. So we’re excited to play a part in bringing more attention to this segment of the family and offering some support and resources. And we do hope that there are children and young adults that are actually joining the webinar.
And again I just want to call out that we’re focusing on the young adult because it’s the most prominent. But as Belena mentioned children can be much younger.
So this next quote came from a great book that I highly recommend written by Alexandra Robbins an investigative journalist and author really capturing a synthesis of research and surveys with young adults and I’ll read this quote. “When young adult emerge at graduation from almost two decades of schooling during which each step to take is clearly marked they encounter and overwhelming number of choices regarding their careers, finances, homes, and social networks. Confronted by an often shattering whirlwind of new responsibilities, new liberties, and new options they feel helpless, panic, indecisive, and apprehensive.”
So it’s just a very emotive quote and the part that really jumped out at me is the idea that each step is clearly marked up until this point. I mean basically your parents are structuring your life school high school grade school is all very structured, even college is very structured. But there is definitely this sense of an abyss once you graduate college and a lot of anxiety. And obviously this plays a key role in the Sandwich Generation dynamic.
So I know Belena you have a younger child and obviously the issues are a little bit different. What aspects of having a younger child have you experienced and what has helped?
Belena: Well my mom’s condition is dementia so she has memory related issues and cognitive issues. And so one thing that I noticed throughout the years is that when you have a child who is growing and an adult who is declining they tend to kind of shift and they kind of at one point they were kind of at the same level so to speak.
And now what’s happening is my daughter is getting older and my daughter is declining and throughout this whole shifting they’ve been having some tensions. And I notice somewhat that my daughter actually is starting to become a little resentful. She’s resentful because sometimes my mom doesn’t necessarily treat her as like a grandchild she treats her as somebody who competes for my time.
And so that happens and I try to deal with that by spending time with her spending time with my mom, and also spending time together and going away together so that family unit doesn’t get as distorted sometimes. But it’s really hard to explain it to a child and it’s also hard to explain it to an adult who has cognitive issues.
So it’s all relative it depends on your situation. In my situation that has been an issue in my regards and really what I’ve learned is to try to focus on the child’s needs. You do need to focus a lot on the person that you’re caring for but my mom tends to understand a whole lot more than a pre-teen…
Chris: Yeah thanks.
Belena: So that’s been one of my biggest frustrations in trying to get her to understand what is going on and she doesn’t quite understand the issues and the medical issues going on.
Chris: Yeah thanks. And so it’s great that most of our research here and what we’re about to share is focused on the adult child. But because Belena has worked with a supported a younger child pre-teen adds a lot of versatility to this section. So we’ll look at some of the core insights for young adult children that came out of our lit review. Think about today’s economy there is just a significant struggle to find a job even for college educated young adults.
We talked about just the overwhelming sense of how to handle these new responsibilities increased responsibilities. And because of those two things this was really interesting. One article noted that the young adult segment of the family had the highest prevalence of anxiety and depression. Most of the older literature would say that it is really the dual caregiver, but many of the studies today are really calling out the high level of anxiety and depression uncertainties for young adults which is really critical and obviously it affects the entire family.
You have young adults that need to move from their high school relationships to the college relationships and beyond. Even from the standpoint of romantic relationships, a lot of blogs and articles around how difficult that shift is.
The biggest push and pull for the young adult I think was this idea of desire for autonomy yet the lack of confidence and the lack of financial ability and the financial dependence on parents. And one of the really it was humorous but impactful statement was my daughter wants me to treat her like an adult, and then the next day she asks me if she can have $20 for gas. So I thought that was really captured sort of that dichotomy. The idea of feeling indecisive and uncertain about not only their college path but their career path was another key insight.
So we’ll go to our third and last segment and obviously just as important really understanding the older adult or grandparent, and again we’re calling this the late life transition. I just want to make sure I call out the idea that all three of these transitions are happening simultaneously. And we really feel that that really hasn’t been captured in the research and a lot of publications around the Sandwich Generation that you have the quarter life, mid life, and late life transitions within a family all happening at the same time which is really difficult.
So we’ll share a quote this finding team from the United States of Aging Study which was led by the National Council on Aging, United Healthcare in USA Today. It was an online and mail survey of 2,250 adults aged 60 and over and interestingly the study found that half of older Americans report having someone they consider to be a caregiver in their lives. So obviously many of these people have dual caregivers supporting them. And close to 1/3 or 28 percent of seniors say that they serve as caregivers for someone else.
So the 28 percent I think again speaks to the idea that the aging parent or the grandparent is not always the care recipient. That there are many cases where the person is caring for their child and also their grandchild and I thought that was very interesting. So again thinking back to the original Sandwich Generation definition that we shared older adults are much more involved today than they were back in 1981 in terms of support for the entire family.
So some of the core insights for older adults and again we’ll start from the top and this was all from the survey that I just mentioned. Number one a sense of optimistic outlook wanting to live in the moment, enjoy life, and just a sense of valuing time. Recognition that a person is older and they want to make the most of their time. Definite interest in staying active, staying social particularly with friends.
And the next two to me capture the push and pull of the older adult. And that is on one hand really valuing time with family and wanting time with family. But then also understanding how busy family and the dual caregivers are and not wanting to be a burden and that really came across strongly for both the dual caregiver and the aging parent that there is again a dichotomy there that is really difficult to manage.
The desire to get out and be mobile, concerns about safety particularly driving, the ability to adjust to the changes that they’re going through, strong, strong desire to remain in their home which has been documented now for years. Financial security is a concern especially as medical issues medical bills begin to mount.
Many older adults today much more than in the past desire to stay in the workplace or remain in the workplace and be productive. And then not surprisingly just the absolute core insight that people want to be independent for as long as possible. And because of that many times they will hide challenges that they are going through particularly medically because again they don’t want to be a burden to the family caregiver.
Belena: Yes, so being a . . . oh sorry.
Chris: No, no I was just going to say from your perspective just when you think about your interactions with your parents which of these stand out the most?
Belena: Not being a burden.
Belena: Yeah not being a burden is one of the biggest aspects I mean I know I got that from my mother before she became disabled. And I hear that all the time from my clients too they want to remain as independent as possible and not be a burden to their family members. But in the situation if I’m coming in pretty much there are some issues that need to be addressed. But not being a burden is one of the main things that they want to do they want to keep that independence and I can understand that.
Chris: Great. So we’re going to shift now to our second layer of research which again is our social media mining and again we went through 500 verbatim quotes from blogs, Facebook, discussion boards. So we have one quote for each segment of the family unit and we feel that these really help validate the challenge.
This first one came from a dual caregiver. “My dad had Alzheimer’s mom has heart trouble, mother-in-law has emphysema. As the oldest children of both families we are the go to ones as well. I have an incredibly stressful job on top of it all. I try and get my siblings involved and delegate responsibilities. We made bed books for them and keep them up to date. We involve the neighbors as well. I also have three kids, grandkids and their problems to deal with.”
So this is just again an amazing quote in terms of capturing the number of different challenges that a dual caregiver can experience. But also you can hear that the mother-in-law is struggling with health issues. A mother the person’s mother is struggling with heart issues. So this really brings home as Belena did very poignantly just the number of plates that are spinning and just the simultaneous challenges that dual caregivers are going through.
And when we send these presentations out to you we’ve given you the links to each of these discussions boards so that you have the opportunity to read through and just learn more from these great quotes.
The second quote came from a young adult child. “I’m a 26 year old male living at home with my dad and younger brother. I have a bachelor’s degree in business administration but unfortunately a low paying job, student loan bills, credit card bills, and car expenses have not afforded me the ability to move out on my own yet.”
So again you sort of read into this the desire for autonomy toward the expectation that if you go to college and you secure a degree that you’re going to be able to move out on your own. But in many cases in today’s world with the economy remaining financially dependent on a parent. So again we have the link here that you can reach out to get additional insight.
And then our third social media quote came from a grandparent again very poignant. “My one daughter has all these responsibilities with her job and she has children. I don’t feel that they should have to take care of us. They should see us more because we are getting older but like I said they have big houses to take care of, they have yards to keep clean, and they are workaholics.”
And again as an educator I just these quotes are so meaningful in terms of when you dissect them this idea of insight “My one daughter has all these responsibilities.” So it’s very common that the grandparent really does understand the burden that family caregivers are going through.
But at the same time they want that time they want to they value the time with their family and want to spend time with their children and grandchildren. But they do call out the challenges with keeping up with the yard and the house and the fact that people do have to keep up with their careers. So three quotes that again reinforce the findings that we found through literature review and obviously in this case social media.
So our last lab research again was reaching out to Belena which we talked about and also doing a lot of research with the Family Caregiver Alliance, Caregiver Action Networks a great advocacy organization that we’ll talk about a little bit when we get into our toolkit.
This quote came from the Family Caregiver Alliance which again really reinforces the theme for the webinar today. “Many of us help old or sick or disabled family members or friends every day we are glad to do this and feel rewarded by it. But if the demands are heavy we can also become exhausted and stressed. We think that we should be able to handle caregiving roles on top of busy work and family schedules and begin to feel guilty and depressed as our stamina wanes.”
So what I loved about this quote is just the idea that caregiving tends to be positioned as a burden. And you hear and see the word caregiver burden so much. I think this person really captured the fact that people want to care and that they feel rewarded when they have the opportunity. In many cases they don’t really recognize their limits and at some point the exhaustion takes over and when you have exhaustion and depression and can’t keep up with those caregiving roles there tends to be a lot of guilt that people experience.
Belena: Chris, you know what’s interesting if I can interject real quick is if when the grandparents quotes from the social media when they talked about being workaholics. They called us workaholics. I found that when I was looking at that before we started doing this presentation and they do view it as workaholics.
But at the same time there is so much that we do that’s more than they did in the past. What I’m saying we’re always busy we have to keep up with social media, the internet, our Facebook status and all these kind of things that go along with life that they didn’t have to deal with. And so a lot of times I do hear that they’re just so busy they’re doing this and doing that and I don’t want to be a burden.
Belena: And sometimes I’m saying that as a dual caregiver I had to asses that and I had to see exactly what was it that I could drop off to not make me so busy. And that also included when my daughter came along and realizing that I need to decrease my work hours. We suffer from having to decrease in our career can suffer from being a dual caregiver or being a working caregiver. And I did decrease my hours and adjusted my life accordingly and sometimes that’s not possible for some people. But for me it was possible and that’s one of the changes that I made.
Chris: Great point especially the idea of self assessment and the importance of self assessment.
Chris: And Belena will share with everyone when we reached out to Belena and shared the webinar presentation and the blog she wanted to make sure that we included two additional quotes. So Belena can you speak to the two quotes on the screen?
Belena: Sure. The first quote “Role strain is by far one of the leader factors in a dual caregiver ritual.” And we kind of touched on this one already but how I usually describe this is I have people write down tell me all of the roles you play when it comes to others. And so I’m just going to kind of say some of them.
You have yourself you have a role and a responsibility to yourself, you have parents, you may have a role as a spouse, you may have a role as an employee or an employer. You have a role as a caregiver; you have a role as a homeowner and I put homeowner in there because that’s not actually to somebody else but you really have to take care of your home. You have a role as a friend and sometimes people volunteer or a member of a church or some type of organization that they feel strongly about. And so I named somewhere around ten roles.
And role strain is when you add all the demands that come along with those roles your roles get strained. And therefore some of the things that could be of value to you in your life like being a friend, or volunteering, or doing more things with your spouse. It’s definitely the least that always seems to get the least amount of attention is yourself because a lot of caregivers don’t take care of themselves because they are trying to fill those roles so that’s what role strain means.
And the second one is “As a dual caregiver I feel guilty when I can’t be what I want to be for myself and others.” And that it’s kind of ditto situation when I can’t be the mother to my child or when I see my clients not able and getting frustrated and getting angry or whatever the case may be, it’s mostly because they can’t fill what they’re trying the goal that they’re trying to reach. And that goes for me too when I can’t make it to something I get frustrated and then that’s where the guilt comes in.
And then once you have the guilt a lot of other things follow. So it’s really important like we just talked about and I think we’re going to talk about it in a minute about self assessment. Really assessing what is going on and what would I like to happen and how can I get there.
Chris: Absolutely and again thanks so much for that great feedback it shows again the benefit of working with an advocacy organization. So a couple slides we’ll move through here pretty quickly. This one we wanted to make sure that for those of you living in the Sandwich Generation you have an understanding of different care team members that really can surround you. And help you to manage the challenges that Belena described and that we described through our research with help and support and education. It isn’t something that you have to go through on your own.
We do recommend that you always start with advocacy organizations and in a little bit Belena will talk about caring support and solutions. And we’ll talk about a few other advocacy organizations that can really help you navigate the system and find the support and education that you need. Really looking at across the screen here wellness instructors and coaches can help with stress relief and staying active yoga and tai chi can be particularly helpful with stress reduction.
Home care is really important in terms of getting assistance with providing personal care and other activities of daily living. Respite services, geriatric care manager can much like social workers help you to navigate the system and really can play a role in helping you to coordinate care particularly when dement Alzheimer’s and other types of dementia is involved. Financial advisors for the young adult’s guidance counselors and job coaches to help with some of the job challenges and the economy that we talked about earlier.
And then family coaches and family therapists can really help with family meetings and family therapy sessions. And again in keeping with the spirit that this is really a dynamic that affects the entire family it can help to have a health care provider with that expertise to guide you through. And then finally the importance of back up caregivers just friends and family and neighbors that when you’re not able to go any further and you’re exhausted that you have that network that you can reach out to for additional support.
Derek: Great so that gets us through a tremendous overview and support to really validate the topic of today’s call. Now it’s time for us to transition for healthcare professionals, family caregivers those living in the Sandwich Generation. We’re going to transition the webinar into presenting tools that you can use to do additional research or that can help support you while you’re supporting a loved one in the Sandwich Generation. And so with that I’ll turn it over to Chris to start introducing the first tools.
Chris: Great so we’re going to start with our solutions webinar action plan. We’ve given you six key steps and I’ll walk through them pretty quickly. The first is reflecting one of the common challenges is that we’re so busy that we don’t really take the time to acknowledge the role changes. And really to mourn the loss of having a younger child that has now aged and those kind of changed and your role is changing. There is also an opportunity to write down your hopes, goals, needs, and concerns. And journaling can be really helpful and really if everyone does this in the family it provides an opportunity for everyone to reflect and share.
From the learn standpoint you want to get as much information education as possible and we hope our toolkit helps with that. You want to share and validate each other’s goals, needs, concerns and that really can help the family come together and understand each other. Once a family understands each other’s challenges they really can work together to make those transitions as a groups, as a family unit.
You want to develop a plan for reaching your personal goals and your family goals and it’s really important just to start small and set short term realistic goals so that once you achieve them you can gain confidence as a family. You want to act and put your plan into action. Obviously we’ve called out a lot of challenges throughout the presentation so expect bumps in the road. But if that happens just adjust your plan and move forward.
And then evaluate if you’ve had a family meeting or any family therapy sessions try to set a date for follow up so that you can evaluate your progress and notice and celebrate the success that you’re having.
Okay we’re going to walk through our toolkit now and Belena and I are going to take turns walking through some of our favorite tools. We’re going to start with tools for healthcare providers. The first one is the great organization called the American Association for Marriage and Family Therapy. And again as you can see there’s a great [hats] for both the caregiver and professional caregivers. Great tools for social workers and counselors around helping to organize and facilitate family meetings. And also resources and provider directories that can help people find a family therapist.
And then the second one that we wanted to share is from the Pew Research Social Demographic Trends Report. So this was the 2013 report I mentioned a little bit earlier that provides findings from an online survey called the Sandwich Generation: Rising Financial Burdens for Middle Aged Caregivers. So some great statistics that really focus on more of the financial challenges that we talked about earlier.
Our next tools are really related for young adult children. I mentioned earlier the tremendous book by Alexandra Robbins, the “Quarterlife Crisis”. So we’re going to give you just a quick screen shot of that cover. This is again it’s just a one stop synthesis of all the surveys and research that have been done with younger adults, and also provide some great resources for younger adults.
Along the same lines we wanted to share a message board that can be found at quarterlife.com. So as you can see when you scroll down very relevant topics that we worked through and I don’t think that there’s a lot of awareness that these exist. If you’re a young adult or if you’re a dual caregiver this is something that you can let your children know about and they can go on and network with people like themselves and work through some of the issues and challenges that we discussed.
Now we’ll shift to some tools for supporting dual caregivers. The first tool this really is one of my favorite’s. A very innovative interactive guide found on the AARP website, and it’s really focused on managing change and transition so extremely relevant. You’ll notice that the action plan that we developed very much aligns with what you see in this tool. And in the top left of the screen you’ll see that there are resources for work and then also real stories of how families have come together to establish their plan, develop their plan, execute it and some of the success stories they’ve had.
The second tool comes from the Caregiver Action Network and it’s really nice that they actually call it a toolbox it fits with our tool kit. So there are great, great tools specific to coordinating care, managing medications, tracking projects. Really just a comprehensive and interactive tool that doesn’t really require a lot of reading and gives you solutions to a number of common challenges.
And then the third tool that I’ll speak to earlier Belena mentioned the importance of self assessment. Again the Family Caregiver Alliance actually developed a great caregiver self assessment questionnaire. So this helps you to really identify the challenges that you’re going through. It’s a very simple checklist and it’s something you can share with your spouse, other family members, and then also with your care team so that they can understand where you might need additional help and support.
And now Belena’s going to walk through additional tools from the Family Caregiver Alliance and then also from her website Caring Support and Solutions.
Belena: Okay yes, the reason why I suggested this particular page it is deeply varied into the Family Caregiver Alliance which I am a fan of their website. If you go down right there underneath where it says Practical Tools and Resources for Caregivers and Professionals there’s two links. One is for caregivers and the other one if for professionals.
And that actually will open up a PDF which is a very large document and it has a lot of resources that you could use, go to. And they actually categorize them to make it easier to kind of zone in on exactly what you’re looking for if you know exactly what you’re looking for.
As you can see down there so if you’re looking for planning legal, financial issues or something dealing with day to day care or looking for living arrangements, they have a lot of different. And in those was 2008 a lot of those are still very relevant today so I always suggest that one and I actually use the one for professionals myself.
As far as my website I know I’m going to talk about and I know we’re getting close in time I’m going to talk about our services a little bit later on. But I mean you can find out more information if you click on “Services”. You can find out a lot of the different things that we provide to our clients and also a little bit more information about the Care Club so I’ll touch on that later.
But this is our website and you can really go there we do work with people in other states not just necessarily in Georgia. And those services listed underneath there, those four services are the services that those are our core services. We’ll talk about that a little later I don’t want to run out of time so but we’ll mention it there. But our website is at the top if you want to visit our website to learn more information.
Chris: Great thanks, Belena. So we’re going to shift to two tools quickly for supporting grandparents. The cdc.gov which is a great repository for information for older adults in terms of not only caring for themselves but also living in the Sandwich Generation. They’ve given you a number of different resources. One of Belena’s favorites is AARP…
Chris: So we’ll pull that up so Belena if you could speak about AARP for us.
Belena: Yes if you can go to the “Caregiving” link underneath of the right next to money yes. You can go directly there they’ve actually created this part of their website recently and the one right there where it has long-term care calculator on the right-hand side, yeah. That’s one of the links that I do suggest to people who do call up inquiring and just trying to figure out what they want to do and going forward.
Because if you go down one of the things that I hear a lot of people say they didn’t realize how much it was going to cost so I’m not surprised to hear a lot of different research about the financial issues when it comes to caregiving because it’s a huge issue. And this tool will actually help people see what it is.
I mean you could put your state in; you can compare everything that you’re going to be moving from one state to the other, how much more is it going to be in this particular state or this location. And so you can definitely look at all of that compare and just have an idea of what you’re looking at long term. I think that’s a great tool but the whole site has wonderful tools and resources that are available and it’s very easy to use.
Chris: Great thank you, Belena. And then our last section we’re going to go through where we wrap up and we go through to Q&A is our tools related to family meetings. Both Belena and I have emphasized the importance of family meetings I’ve seen firsthand that they are very much underutilized. So these are three tools we’re just going to focus on this one from the Family Caregiver Alliance which gives you a very, very detailed prescriptive guide to start, run, and follow up on a family meeting.
So we’re going to wrap up I always like to start with three key takeaways. The first is that Sandwich Generation families are experiencing simultaneous life transition and role changes which we’ve talked through. That all segments of the Sandwich Generation the young adult, the dual caregiver, and the aging parent can benefit from education, tools, and support and hopefully this webinar has been part of that. And that effective planning, communication, and support are critical to a successful outcome and transition.
Derek: Great so we’ve had a great conversation here we’ve presented tools. Now we have a lot of questions and comments that have been entered into the go to webinar panel. So we’d like to invite the audience those who are dialed in and attending virtually today to open up for questions and answers for Chris and/or Belena. And with that we will also if you have any comments, shared stories, resources that have helped you that may have been triggered by seeing some of the other tools that were presented we would love to hear from you as well.
So with that we will compile the Q&A and just again you can type the Q&A into the go to webinar by hitting the orange arrow and the question panel is at the bottom of the screen.
Chris: And while you’re typing in questions we can read some of the brain writing comments which are great. Rebecca writes “I can resonate with the exhaustion part I find it hard to get everything done and to get enough rest”. Sandra mentioned “exhaustion and guilt came to be the biggest concerns for me”. Sylvia mentioned that “I have heard the term double decker sandwich midlife caregiver caring for three generations parents, adult children, and also grandchildren” so thanks for sharing that Sylvia.
And then Sandra “lamenting signs of aging revolving around my own mortality, declining health and energy, arranging things for my learning disabled son. I hope I have learned what to do and not to do about leaving my son with taking care of me and in my case growing older alone.” Thank you Sandra so much for sharing that and we definitely feel for you we didn’t talk about the influence of disability which can be really impactful for children.
Belena: Yes definitely.
Chris: And then a last comment again from Sandra “feeling very guilty about not giving my son more of my time and energy in his teen years. Work and taking care of parents as they decline left him in third place.”
Belena: I can relate Sandra.
Chris: And again hopefully, Sandra, Belena and I can be a resource and hopefully a lot of tools that we’ve shared can help you with this and it sounds like a very challenging situation but we give you a lot of credit for your courage.
Derek: One question that’s come in where do we start if we’re starting to need help feeling that we’re in this Sandwich Generation? Maybe we’ll throw that one over to Belena where’s the it looks like the question is where do we start first Belena?
Belena: Well the first suggestion that I would do is to have a family meeting I’m not sure exactly the who is all involved in the family. But she stated or he stated that they feel they are about to was that the question they said they were about to?
Belena: Okay. So yes if you feel like you’re about to you’re actually at a great point where you can actually put things in place. So I would suggest that you actually sit down and talk to your family members who will probably be a part of the caring process. Now sometimes not always all the family members are a part of the caring process. So whoever is going to be a part of the caring process? And then sit down and talk to the person if there is if you’re able to the person who you think you may be caring for and start talking about the what if’s the what if’s are a good conversation to have with them so you’ll be able to make decisions better as time progresses.
So I would start with your family and I would start with yourself. And then from there you can then go and then maybe you might want to seek out some professional, maybe your physician might be able to recommend somebody in your area that would be able to help you. You definitely need to start there start at home.
Derek: Great thanks, Belena.
Belena: You’re welcome.
Derek: And Belena a second question I think this is relevant for Sandra and then your situation. When you are in a Sandwich Generation and a parent has dementia or some type of disability that impacts their insight what’s the best way to communicate and support someone who doesn’t necessarily understand the challenge and how to overcome some of the challenges?
Belena: So what I’m understanding if I’m reading that correctly is that the caregiver the person the care recipient is not quite understanding what’s going on and they’re putting demands on that person so that’s how I’m understanding it. Is that how you’re understanding it?
Derek: Yeah it’s almost as if they can’t process we’re talking about family meetings and the importance of communication. If you have a family member in Sandra’s case her son, or in your case a person with dementia and they don’t have the insight or understanding to have that dialogue. What are some things that people can do to still try to work effectively with that person?
Belena: Well that individual actually not everybody in dementia actually has some of the behaviors that a lot of people may see on the internet, or they may hear of. Like my mom is not she doesn’t fight me with different things so I can sit down and have a conversation with her and she doesn’t necessarily quite understand it so far. But I do suggest individuals if they are having that issue to kind of try to find someone that that person trusts who the care recipient trusts and bring them in on the loop.
Now if we’re having memory cognitive issues then at that point you really do need to bring in a third person whether it’s a professional or like I said someone who they trust in order to help move things along. Because if you’re pulling and they’re pulling nothing is ever going to get done and you know that you’re sitting there you’re trying to explain things to them and you’re trying to get things completed or arranged. You need to go on the outside and make arrangements and just kind of take over sometimes. There have been times that I just took over and did what needed to be done and then let things fall as they may.
Derek: Great suggestion. Great thanks so that ends our question and answer session. We will Belena I think that again thank you so much for your time you’re very busy living in the Sandwich Generation and running a business. But yeah folks want to get in touch with you could you tell us a little bit about how to do that and how your company may be able to help.
Belena: Well you can call us on that number there or you can go to our website and you can click on “Contact Us” and just quickly fill out the information and then one of us will be able to get in contact with you. I’ll just they definitely put in a prescription of what your needs are and then we’ll contact you and see what we can do. And if we can’t help you then we will help you find someone that can.
Derek: Fantastic thanks again Belena for being on the call.
Belena: Thank you for having me.
Derek: And Griswold Home Care again thanks everyone on the webinar. We are a national purpose driven home care company. We refer professional caregivers into the home to assist aging and older adults. We support those individuals with personal care, homemaking, and companionship services. Our mission is very simple to celebrate, educate, and advocate the choice to remain independent at home.
Our founder Jean Griswold she was the wife of a Presbyterian minister and founded Griswold 31 years ago after seeing the need for home care of members in her church. Our commitment today is to bring quality affordable care to all who need. You can contact any care coordinators throughout the country at 800-GRISWOLD for advice and certainly we can help orient any families in need with advice and providers to support especially those in the Sandwich Generation.
So again with that I want to thank our panelists today Chris and Belena as well. And thank you again everyone who attended have a great week.
Belena: Thank you.
For more information, please review our Sandwich Generation Resources.