Hanh:
1:26
Hi. I'm Hanh Brown and I'm the host of the Boomer Living Broadcast, a show dedicated to assisting families as they navigate the later third of life.As the population ages, more people live in low income and middle income countries.Adapting health systems to this demographic shift is a major global challenge that requires everyone's help to solve.So, here at Boomer Living Broadcast,industry leaders share information.Inspiration and advice for seniors,our expert panelists discuss topics like senior healthcare, dementia care giving technology for seniors and affordable senior living options.So thanks for participating today in the conversation.So today's topic is care giving.Caregivers are the unsung heroes of our society.They provide low support and assistance to those in need.Without them many people would not be able to live their lives as fully as they deserve.So an update for the 2020 shows a 9.5 million increase in family caregivers from 2015 to 2020.One in every five, Americans is now a family caregiver.It also shows that caregivers are in worse health than five years ago.There are more than 65 million people in the United States who provide care for someone else, whether it be there spouse, a parent child or a friend, and yet we rarely hear about them and how they make our lives better every day.So we want to change that by sharing stories with others so that everyone can see what an incredible impact caregivers have in our society.So in the last 12 months, according to the caregiver.org, approximately43.5 million caregivers have provided unpaid care to an adult or a child,the majority of caregivers, about 80%care for an adult, approximately 40million caregivers provide care to adults with disability or illness.In about 15.7 million adult family caregivers care for someone who has.Alzheimer's disease or other dementia.So clearly caregivers provide a vital service that allows people to live with dignity and independence as long as possible.So the caregiver profession is one of the most undervalued, overlooked,and challenging jobs in our society.So it's time that we start honoring caregivers for all that they do.So join me today in conversation is Aaron Blight.Aaron is the author of when care giving calls guidance.As you care for a parent spouse or aging relative, Aaron published his book in order to help people who are entrusted with caring for others.He speaks to groups everywhere about building caregiver, resilience and social dynamics of care giving.His work is no longer a job.It is now all about significant.So Aaron, welcome to the show.
Aaron:
4:41
Thank you, Hanh.Thank you so much for that lovely introduction.I loved what you said about caregivers being the unsung heroes of our society.I agree with that.
Hanh:
4:52
Well, thank you so much for your time and sharing some wisdom today.So can you share with the listeners or folks watching a little bit about yourself, your journey, your journey in the care giving service?
Aaron:
5:05
Sure.So back in about the year early 2000, I was working in national healthcare policy and the federal Medicaid program.And so I was writing national healthcare policy for elderly and disabled people.But to be honest, Hanh, I didn't really know a whole lot about what it meant to be elderly or disabled.But all of that changed when family care giving entered our lives,my mother-in-law was diagnosed very abruptly with cancer.She had a brain tumor and she was given a very short time to live.So she moved into our home.She had two brain surgeries.She went through radiation chemotherapy and she was a miracle.She, she far outlived the doctor's projection.But my wife and I became the sandwich generation.We became part of the sandwich generation and we were raising our young family and also caring for her mother.And that went on for about five and a half years.That just fundamentally transformed our family.And it caused me to redirect my career.After my mother-in-law passed away, she died of cancer.We, I left the federal Medicaid program and opened my own home care company.And serving families with problems and challenges similar to mine was,was very rewarding for me, but I got to see how universal care giving is in our society and how the challenges that families face are very similar.I mean, they're all unique.Everybody has their own unique personalities and circumstances and illnesses and all of that.But the care giving experience, there are a lot of common themes that emerge.And so as I worked with families in my community over the years,it also motivated me to go back to school and I, and I got my doctoral degree, which is in learning.And I studied care giving in connection with my doctoral degree.And I looked at care giving as a transformative learning experience.So when we talk about care giving, I really like to focus on the, the social context of care giving, the social dynamics of care giving and how care giving changes relationships and one's sense of, of who they are in a family and in the world.And it's a very.Remarkable experience that you go through as a caregiver, and it really changes a lot about your, your perspective.And I sold my home care company and for the last four and a half years, I've really devoted myself to helping caregivers, professional caregivers and family caregivers in their roles.Um, and I wrote, as you said,when care giving calls as a way of trying to help others,
Hanh:
8:07
Well, congratulation on your dedication.And when you say selling your home care business, that's home instead, right?
Aaron:
8:15
That's right?Yes.I was a home and I had a couple of home instead.Senior care franchises.
Hanh:
8:21
Well congratulation.So now, what's your philosophy on care giving and how does it resonate with your experience?
Aaron:
8:30
I love that question, Hanh.I had to think a little bit about it.And when I think about the, my philosophy of care giving, I think about the word care and care is both a noun and a verb.So when we think about care, the noun.Care the noun is the responsibility that a person has to look after someone else to provide support or attention or comfort or treatment to another person.So that's care the noun, but care.The verb is to be interested in that other person and to want them to be well, to want them to be happy, to want them to have comfort and peace.It is possible to provide care the noun without care of the verb.But, as human beings, you know,when we think about our healthcare delivery system, I teach a class at Shenandoah university and we do talk about this kind of duality of,of the meaning of the word care and it's ever present in the healthcare industry and long-term care in home care.But as, as human beings, we pay for care.The noun when we enter the healthcare delivery system, but we yearn for care of the verb as a patient.You know, we want to receive competent care, but we also want those who deliver the care to care about us as human beings.Right.And so I think that's really my philosophy when it comes to care giving.Is that we have to really honor and respect and pay attention to both care the noun, as well as care.The verb.
Hanh:
10:25
I appreciate that.Yeah, I did.Philosophy.So what is your opinion on the future of care giving?
Aaron:
10:35
I believe that it's really about the demographics of our society.Right?We know that people are living longer lives.And they're also living with more chronic health conditions.And so the need for care giving is only going to increase.We have the baby boomer generation that is going to need more and more care.So as I think this is a really, it's a broad challenge that cuts across almost all of the nations of the globe.
Hanh:
11:08
Very true.Very true.Now, for those of you listening or watching I let to know if you're currently a caregiver for a loved one, and if so, what challenges are you facing?So feel free to comment in the section below as you're listening or watching Aaron and I.Now, Aaron, what have you found to be the most difficult tasks and care giving for a parent spouse or aging relative?
Aaron:
11:36
Well,you know, I think that the most difficult task is probably going to vary from one caregiver to another.It really will be based upon the needs of the care receiver and the capacity of the caregiver to meet those needs.So a patient that has Alzheimer's is going to have very different needs than a person who has cancer, right.Or a person who has, who is a quadriplegic.And so the tasks that you have to perform will vary greatly across the different care contexts.But I do believe that caregivers learn how to perform the tasks that the care receivers need, and they learn by practice by just doing what is needed.And you may not know how to give insulin for example.But you can learn.You may not know how to move someone who was paralyzed from a bed to a wheelchair, but you can learn.And so that's what caregivers do.That's how they overcome those challenges in performing those care giving tasks.There's really no substitute for practice.And even those who have backgrounds in medicine find themselves.I hear this a lot from, from doctors and different people that have, you know, credentials in medicine,those credentials help, but they don't qualify you to do all of the tasks that your loved one needs.You still have to learn how to do it.
Hanh:
13:15
Absolutely.Yeah.So now, how did you feel when the role reversal happened for you?
Aaron:
13:24
Yeah, that's a, that's a question that I, I really appreciate, Hanh.And I've heard people talk about a role reversal, and it's hard for me to look at it as a role reversal, because especially when you're caring for parents or maybe a sibling, the historic relationship that you had with that person.It's always underpinning everything that you're doing.And so, you know, in my case, was a family, we were caring for my mother-in-law and my wife was always a daughter first in her mind, even before being a caregivers, and that historic family relationship will inform it will shape the way that interaction occurs in a care giving context and being a caregiver.It doesn't necessarily replace that historic family relationship.But it is fraught with challenges and questions and angst.And for me, I had a very hard time at a fairly young age, assuming the caregiver responsibilities for my mother-in-law.I was not prepared for it.I was more interested in raising my children than caring for my mother-in-law.It just, I wasn't expecting it at all.I was, I was 29 years old when it began.And a lot of times people are just not prepared for this, even though, you know, in the back of your mind that,you may have to take care of your parents at some point, but often that's oh, that's down the road, you know?But, I'm thinking of a woman that I know that was,had her 93 year old mother with dementia who moved in to her home.And this woman was in her early sixties and she struggled tremendously with that responsibility.So you often feel this internal conflict, and in the literature we call it an identity discrepancy.The identity of who I am within this relationship.Am I a caregiver?Am I a son or a daughter?And how does my historic relationship change things?And I, I see a chat here.Um, it's this, this from Donna.I love your distinction between care, the noun and care the verb.I wonder whether you saw a piece by Dr.Laura Malden that came out yesterday.She asserts that the reason caregivers aren't supported is that we do not value the people we care for because they are dependent.And in our society, we value independence above all, by the way, as you know,I care for my son who has multiple disabilities and is medically complex.Yes, Donna.I did see that post, and I am in complete agreement with Dr.Malden that our society really devalues care receivers, including people with disabilities, people who are older, people who are vulnerable.And I think that is a shame.I think it's a travesty.And I do think that the effect also is that it devalues the caregivers who are providing support and assistance to those people.I think that also is part of the reason why caregivers professional caregivers are not paid very well.It's just the devaluing of care in our society.
Hanh:
17:18
Yeah.And you know what I want to make note that, you know, before we devalue the caregiver V we had to be very careful because we're also devaluing ourselves.Right.Because at some point, We are either a caregiver or caregivers.So I, I say this, you know,painfully through life experience.So as a society, I think we need to honor and respect folks who have,whether it's sacrifice their time,their career, their goals to dedicate and caring for another person.And also the one receiving care because that's you and I that's everybody.
Aaron:
18:00
It absolutely is.It's just a matter of time unless.Abruptly in a car wreck or something.We are all going to get there.We're all.We will all reach the point that we're going to be dependent on someone else for care.I totally agree with you, Hanh.
Hanh:
18:14
Yup.Yup.Now, do you see a benefit or drawback when family members stay with their loved ones and provide informal care?
Aaron:
18:25
Well, there are benefits and drawbacks.It's really a trade-off.Yeah.I think that when, when you bring your loved one in and you have them live with you and you are providing care around the clock, you're probably doing a fantastic job caring for them.Arguably there's, there's no one that,that loves them and is going to be as attentive to their needs as you.And so you can have confidence that, you know, what's going on with your loved one.Um, And you can be present.A lot of care giving is just being present and by being present, you're there for, moments that can be impactful in the live in the life of the care receiver and your own.The flip side of that Hanh is that often you can't do it alone.It can become overwhelming.When, when the care receivers needs are, are 247, that is beyond what any single person can do.And so, you can stretch yourself thin you can wear yourself out.You can experience your own health conditions because you are just burning yourself out and you just can't do it all.And so, often care caregivers find that they have to outsource the tasks of some of the care giving because they just can't do it by themselves.
Hanh:
19:54
And hopefully they have all their siblings or other means of support to carry that load.To continue on for the loved one, because we all need respite.We all need a break and we all need to have, you know, proper sleep in, take care of our mental health, physical and emotional health, you know, and then compounding the, the burden, the responsibility of caring for someone else.So that's very necessary.So what are some of the most common mistakes you think people make when caring for family members at home?
Aaron:
20:30
I'll be honest one of the most common mistakes that I see is this belief.That you have to do it by yourself or this belief that nobody can do it as good as you.And so therefore you have to do it all.And I have seen so many caregivers that just run themselves into the ground because they do not get help.And that type of help can be a couple of different forms.It could be helped with the tasks of care giving, getting some relief there, but it also can be.Emotional and a social help that you,as a caregiver need, sometimes you have to pay attention to your own health and your own needs in order to be the best caregiver for someone else.And I see so many caregivers that sacrifice their own well being because you know, their loved one is there in front of them.Their needs are so obvious and they say,well you kmow they feel guilty like, well,who am I to say, I need to go off and do something for myself when you know, my loved one has this condition, the truth is you need to take care of yourself.
Hanh:
21:47
Yes.
Aaron:
21:48
You've, you've probably heard the oxygen mask analogy where, you know, if you're in an airplane, they say, put your oxygen mask on first and then, and then put the oxygen mask on the person that needs your help.And I really think that's a good analogy for, for caregivers.
Hanh:
22:04
Absolutely.You can't give what you don't have, right.
Aaron:
22:07
That's right.Donna says, or that we believe we are betraying.We are betraying love and loyalty by asking for help.These are myths that undermine our resilience in the role.Absolutely agree with that.
Hanh:
22:22
Great.Great comments.Thank you.
Aaron:
22:25
Yes.Well, we also have a comment from curd.This is an incredibly insightful conversation.Thank you much for sharing this information.Well, thank you curd for, for listening.
Hanh:
22:35
Absolutely.
Aaron:
22:35
We really.
Hanh:
22:36
Yeah, thank you.All right.Well, let's talk about the prevalence of care giving in our society.So what can we do to help caregivers mental health issues, such as anxiety, depression, and guilt that often plagued this group of people?What do you think?
Aaron:
22:53
Well, first of all, Hanh, I know that you talked a little bit about the number of caregivers in our society.It's, it's amazing because they're often overlooked and not recognized.Um, and there are mental significant mental health challenges that come with this role.I've seen studies that say that caregivers as a group.Have quadruple the rates of clinical depression compared to the average population.Um, and that's, that's no small thing quadruple the rates of clinical depression.So it really, this really gets back to what we were saying earlier on, about making sure that you're taking care of your own needs.And one thing that I am a big advocate for is caregiver support groups.I love caregiver support groups.And some people who have never been to one might be a little bit reluctant or suspicious.They're like, well, I don't, I don't want to go and, you know,join with these strangers and talk about whatever my problems are.But within caregiver support groups,you find other people who are experiencing similar challenges.And so you can share resources.Especially within the local community, you can share ideas.You also have a group that provides a moral support to one another, and people that can relate, you know, care giving can feel like a very lonely road.And when you're in a peer group like that, that caregiver support group will give you.You realize you're not alone.And I, I am aware of, of many individuals who join caregiver support groups and they make friendships there.And then after their loved ones have passed away, those friendships continue for the rest of their lives.These are deep, meaningful relationships that can be developed through caregiver support groups.So I really am a proponent of those.You can find those locally in your, in your community.You can find them online.There are some amazing resources available online for, for online caregiver support groups as well.
Hanh:
25:12
I agree.I agree now for those of you listening or watching, if you are a caregiver,what are you doing to overcome anxiety, depression, and guilt?When you're caring for a loved one?So let us know in the comment.Okay.Now Aaron, why do you think the care giving role is such an integral one for society?
Aaron:
25:32
Well, a couple of things I would say to that one is just,let's just talk for a second about numbers and economics and your intro,Hanh, about, one in five adults being caregivers in America.I mean, that's a, that's a huge, huge number, some 53million, and that was pre COVID.Those numbers were before COVID.Uh, the second thing which I like to share with people in my workshops is the estimated economic impact of unpaid informal family care giving.If you were to add up the economic impact of the entire long-term care industry,all of the, all of the providers that are out there in the long-term care industry, and you tally all of that up economically, it would still be.Less than half of the estimated economic impact of unpaid informal family care giving.So studies have shown that if we were to try to econ, try to monetize the value of these unpaid economic family, unpaid family caregivers, their economic impact would be more than twice the entire long term care industry combined.But beyond that, you know, family caregivers, they are there,they are the people who are there for those who are in need.And, I, you know, there is a safety net that our government provides with, you know,Healthcare and things like that.But family comes first.Family is always first and family is, who will be there for you as you need help in the, in the Twilight years of your life?Or if you are disabled?
Hanh:
27:27
Very common.Now, who do you, I guess, who is most common hired as caregivers and what qualities make them well suited for this type of profession?
Aaron:
27:38
Yeah.You know, as a person who owned a home care company, Hanh, I was always asking myself this question, how do you identify the best potential caregivers in a, in a home care context?And, you know, I, in my company, I would look at, we would often hire certified nursing assistants that had experienced working in other places,either for another home care company,or maybe they worked in an assisted living facility or a nursing home.And those are people that had, had done this before professionally.And so coming into our company,they had those skills and they had that perspective.And then.Very proficient.Um, we also had another group of people who we hired, who were family caregivers first, and they had done other things with their lives before coming to us.You know, maybe they were a secretary in an office or, you know, maybe they, maybe they worked as a cashier or whatever, but these were people that had other types of jobs.And they found themselves in a, in a, in a family care giving role.So they took care of a, of a family member and now they came to our company so that they could take care of strangers, people that they did not know.And I often wondered between these two groups, you know, well, who.W, well, first of all, what would motivate someone who has no experience in care giving because other than family care giving to come to, to work in this field.And I think that it's really a recognition of the need, that exists and also the relationship.That can be developed and the profound lessons that can be learned in this, in this type of work.And so whether we're talking about former professional caregivers or former family caregivers, or even someone who has absolutely no experience in care giving at all, I think first and foremost,it really is about compassion and.Being service orientated and the tasks, the skills that are required to deliver the tasks of care giving.Those can be learned.Compassion really, really, can't be taught.It's just something that's that's here.Right?And when you are, have a compassionate heart and you're,you're, you're looking out for others and you want to help others.I think those are the best types of caregivers, regardless of their level of previous experience.
Hanh:
30:26
Very true.I agree with you.A lot of the characteristics for a caregiver in my opinion are not necessarily certification because you know, anyone can get that for a window of time and for a fee let's say, but there are characteristics.You're that you have, for instance, compassion, empathy,patience, and given that's not trained, that's not given to you.So very important to be honest with you.That's what I would look for in caring for myself or my parents.So now do you feel there's adequate programs in place to help caregivers?I kind of know where we're going with that, but I'd like to know your take in, what can we do?
Aaron:
31:07
Well, Hanh, that we really don't have adequate programs to support caregivers.I think that there are a couple of challenges to that.One is that often caregivers do not self identify with the role.Often caregivers.And we're talking about family caregivers here first, right?Um, often family caregivers just feel like, well, this is what I do because I'm because of my family member.And so, just recognizing oneself as a caregiver can be a major, amazing point in the process.Um, second, a lot of them, you know, when they become aware of resources, they don't take advantage of them because it kind of gets back to Donna's comment earlier.You know, we believe that we are betraying love and loyalty by asking for help or getting support.Um, the third thing is just the devaluing of care in our society.We talked about that earlier, but I think that more comprehensive supports could be made available to caregivers,especially when you think about the economic value of unpaid informal family care giving, why wouldn't we invest some of our resources and broadening our support programs for, for caregivers?There are some great, caregiver support programs.In the United States, the administration for community living really oversees all of the area agencies on aging across the country.And so if you're in the U.S. wherever you are, there are area agencies on aging and, and they have frequently not all of them, but frequently they have caregiver support programs.They're also in the local community.A lot of hospice agencies have caregivers support programs, and there are resources available online.There are a lot of books.Um, you know, I wrote my book in an effort to help caregivers process their experiences and understand and fulfill their role a little bit better.So, I think there are a growing number of programs out there and supports, but I think we can definitely do a better job.
Hanh:
33:31
Absolutely.Yeah.And I think that's one of the main.Driving forwards that I want to have this conversation with you to bring it to light and to magnify the need,the value, the honoring that we need to do in most of the support.Because like I said, you and I, and if not everyone who is breathing right now, will we need some form of care.
Aaron:
33:54
Yeah.
Hanh:
33:55
So now what are some of those struggles that an individual faces while performing, let's say end of life duties?
Aaron:
34:03
Wow.Well, Hanh, that's something that, if you're caring for someone who has a terminal condition,you know, that you're going to reach that point, right.And caring for someone at, at end of life.It's really a sacred responsibility, I think, to be around someone who is dying,is, it's very difficult.It's very emotional, it's spiritual.It allows you to be near a person who is reflecting on their lives.And, you know, if, if the person has some cognitive capabilities, they might go through a little bit of a process of, of preparing for their death.And this is something that we don't like to talk about.Right?I think this is one of maybe the hard things in preparing in caring for someone who is dying is that death is a taboo subject in our society.If you, if you've worked with hospice agencies, they actually ask the question, what is a good death?That's a pretty, pretty amazing question.Isn't it?What is a good death?Why would you ask such a thing?Our culture would say, why would you even think about that?
Hanh:
35:28
Yeah.
Aaron:
35:29
Hospice takes maybe a little bit more of an enlightened approach and says, well, what is a good death?What is important to you?What do you want to do before you pass away?And let's try to make that happen for you.In our society.Now there's a, this tendency to die in hospitals.And, there's a book called being mortal by a tool.Go on day.You may have heard of it.Some of our, some of the listeners may have heard of this book.I love the book.I think that anyone who is involved in end of life care should read that book.In fact, that book made its way through a lot of hospice programs across the country.Where they would have a reading sessions and viewing parties, or is it there's a movie attached to it documentary.But the, the idea that Dr.Gawande presents is that, death is normal.Death is a part of life and that medicine, which is designed to resist.And to treat and to cure and to prevent, maybe misses the boat a little bit and maybe we need to rethink a little bit how we approach death.And so I think that that's maybe one of the hardest things for us to, to accept and to transition our thinking is an end of life situations.It's no longer about fighting death.It's about what matters the most in the time that remaining.
Hanh:
37:04
Putting closure, seeing if there's any goals, aspirations to do as part of the closure and completing them.Right.And often those goals can be huge that they're trying to resolve, you know, the past 50 whatever years.They've had problems with, so, and it's a privilege to be a part of that right?
Aaron:
37:34
It is.And, you know, in my, in my home care company, our caregivers, we're often in these situations, you know,and they, they just happened to be in the room when family would come and visit their dying loved one.You know, we would see, estranged family members come and make amends before death happened and you know, things like that are pretty remarkable experiences.
Hanh:
38:04
So for those of you listening or watching, I mean, we all know that caregivers put in a lot of hours, so what are your strategies for supporting them?So comment in the below.Okay.So now Aaron, so how does care giving affect mental health in physical health?I know we talked about it previously,but let's do a deep dive on that mental health and physical health.What adverse effect does this have in care giving?
Aaron:
38:31
Well, I was just reading yesterday, some research about, men and care giving,and women and care giving, we're also being, you know, in brought in to the research and some of the studies have shown that, women in particular have a lot more mental health, or they're more likely to experience depression and some of those mental health effects with care giving than men.I thought that was interesting.But men are also prone to, to depression, as a result of care giving on the physical health side, you know,just the, if you are involved in intensive care giving and you are helping with the tasks of care giving that your loved one needs on an ongoing basis, seven days a week, that can take a toll on your body.You may have to get up in the middle of the night on a recurring basis to help your loved one with nighttime needs that can affect your sleep and your ability to have that kind of restorative rest that your body needs.
Hanh:
39:52
Yeah.
Aaron:
39:53
Caregivers are prone to back injury.Because of all of the transferring that you have to do, it's actually the number one profession,when it comes to back injuries,this is a worker's comp issue.But if you're constantly,trying to move your loved one who really cannot bear their own weight, then you can run the risk of, of throwing your back out.And so.The, you know, there's,there are mental and physical implications of fulfilling the role.And really a lot of this is connected to the intensity of care that's required by the care receiver.So if the person has more needs, if they're there, if they're more complex, a greater level of need means greater level of care giving, which means potentially more mental and physical strain.
Hanh:
40:51
Very true.Very true.Well, I appreciate your time and sharing your wisdom.Heartfelt experience and just your dedication in this line of work.So what do you want people who's listening or watching to remember from this conversation?What are some takeaways that you want them to remember?
Aaron:
41:12
I think the first thing would be that caregivers don't have to do this alone.And that it's important to support and to help caregivers and caregivers should be willing to reach out and ask for help when they need it.The other thing is if you know a caregiver, you know, through this conversation, and just as we're talking about it, you may have someone that comes to your mind who is a caregiver.And I would ask you, does that person need a little bit of help?Could they use a little bit of help.And if you think they might be able to use a little bit of help,I would just encourage you to ask them, Hey, how can I help you?And, and don't provide the help that you think is needed.Listen to what they, what they request and,and try to try to deliver the help that they're asking for, because it could be something very different than what you think they need.
Hanh:
42:10
Very true for, to I deal with that.So it's time that we start recognizing the importance of caregivers in our society, because without them many people would not be able to live with dignity and independence.For as long as they deserve.So we need to honor their work by improving their working conditions and pay while also addressing their mental health needs.So they can continue to provide this vital service without feeling overwhelmed or burned out.So for folks listening or watching,what do you think, are you ready to support the caregiver profession in your community comment below?And if you are a caregiver looking to work, looking to work locally, Or perhaps if you're a technologist with some helpful apps for families, or if you are an employer looking to retain employees by providing care giving support, reach out, we love to help you.So thank you so much.