017: Life as a Family Caregiver: The Challenges You’ll Face and How to Survive Them – Lisa Bricker

[00:00:00] Marty Stevens-Heebner: Caring for someone with dementia is not for
the faint of heart. How do you guide yourself through it as well as your loved one?
Fortunately, my guest Lisa Bricker has been there and shepherds her clients to the
challenges she once faced herself. And Lisa will be telling us all about it..
Moving your mom or your dad or yourself. Isn't just about moving things from one
place to another. It is much more complicated than that as are so many things
having to do with later life. How to move your mom and still be on speaking terms
afterward provides in-depth conversations with professionals, older adults and their
family members who shared their stories with warmth, understanding anything.
I'm your host, Marty Stevens-Heebner and here you'll find answers to many of your
questions as well as different perspectives that I hope will inform and inspire you.
[00:01:00]
[00:01:01] Marty Stevens-Heebner: Welcome Lisa. So great to have you here.
[00:01:04] Lisa Bricker: Thank you so much, Marty. It's wonderful to be here.
[00:01:07] Marty Stevens-Heebner: Thank you. And it's going to be great talking
to you about what you've personally experienced as well as what you do
professionally with your clients. Here's a little something about Lisa. She has served
hundreds of families of diverse needs as a senior care consultant, as well as an
Alzheimer's and dementia placement specialist.
Her life's work is advocacy for caregivers and compassionate placement for the
local. Lisa created gently guided to help families transition forward with
compassion. Families feel peace of mind is she takes the burden of feeling alone off
of their shoulders. She also serves on the public policy committee for Alzheimer's
Los Angeles.
When it comes to being a caregiver, Lisa truly gets it because she became a
caregiver herself. When her husband, Gary was diagnosed with early onset,
Alzheimer's in 2012 and [00:02:00] he just passed away. It wasn't a during 2020.
Yes, April 1st, 2020. He was fortunate to have such a caring wife taking care of him.
That's wonderful. So I like to ask what's your favorite memory of your grandparents?
[00:02:14] Lisa Bricker: I would say that there were a lot of memories and mainly
with my mom's parents and we called them grandma and Papa, and they live not
too far from us. My grandfather, about the time I was born, had a stroke at 59. And
live for almost 30 years.
Wow. My grandmother's whole world was taking care of him. So they relied on the
family because resources didn't exist back then, but she always had lots of cookies
and she gave great back rubs. And she was just one of the most giving, loving
people I've ever known in my whole life. Less than five feet tall.
[00:02:54] Marty Stevens-Heebner: She had a sparkle.
[00:02:56] Lisa Bricker: But it was also something intuitive of me [00:03:00] that I
recognized one stroke is maybe genetically my thing growing up. So it was also
instilled in me that I need to take care of myself. Yeah. And I watched herself. We all
watched her suffer. He needed a lot of care and he shuffled around and lived in the
past.
[00:03:21] Marty Stevens-Heebner: Those long-term memories, they manage to
stick around.
[00:03:23] Lisa Bricker: And he had the, because of the stroke, it was more
vascular dementia where they can come and go a little more, to very different. So
that was a huge window into the future. Little did I know...
[00:03:38] Marty Stevens-Heebner: Speaking about what you saw your
grandmother go through taking care of your grandfather, and of course your own
experience with your husband, Gary, I actually wrote a blog called the exhausted
caregiver, and it's so important to find a way to take care of yourself. I don't mean a
selfish kind of way just to maintain your sanity.
[00:03:58] Lisa Bricker: Absolutely. [00:04:00] My husband, Gary did have
Alzheimer's he was 55, but we didn't know what it was exactly. You know, it took
seven years to get a diagnosis.
[00:04:10] Marty Stevens-Heebner: So young, so young. And I think times have
changed since 2005 tremendously. We still have a lot of room to grow as far as
diagnoses go, but he was still young and vibrant and he never had a good sense of
direction.
[00:04:29] Lisa Bricker: He did lose his keys occasionally. So the little things we
would just go, whoa, what's that? It was really confused. I think when it's your
spouse, it's very different than a parent or a grandparent because it's your partner
and the person you lean on for everything. And is there and not, he was
independent for a very long time, but a lot of things happened. He lost two jobs in
two years, four [00:05:00] times in three years of very confusing.
[00:05:03] Marty Stevens-Heebner: I can only imagine. And it must've been so
hard on you also, when it's your spouse, you realize you close in age. So that has to
throw you for a loop as well. You understand your parents having this happen,
[00:05:15] Lisa Bricker: but at the same time, my mother had dementia, but when
it's your spouse, denial's a powerful thing. It affects us. And it's really hard because
the stakes are so high and you might have a little thing. And I would just say, “Oh
no, please stop that.”
[00:05:29] Marty Stevens-Heebner: Oh yes.
[00:05:31] Lisa Bricker: But at the same time as a family caregiver, or I wasn't
even calling myself a family caregiver back then you're beginning to
overcompensate without even knowing it.
[00:05:41] Marty Stevens-Heebner: In what ways?
[00:05:42] Lisa Bricker: Taking charge, making decisions. It's the beginning of
thinking for two people at the same time, two brains at the same time and over
time that just increases. On the other hand, your loved one is overcompensating
trying to [00:06:00] cover or maintain or keep up. It's the beginning of this kind of
stress.
[00:06:06] Marty Stevens-Heebner: So you took care of your mother who had
vascular dementia and also your dear husband who had Alzheimer's. What are the
subtle differences between caring for a parent versus your spouse, your husband?
[00:06:18] Lisa Bricker: I would say we'd go back to the personalities. There's the
saying? If you. One person with Alzheimer's you've met one person with
Alzheimer's. My mother was really easy and she trusted me. My father became ill
with lymphoma in 2005. That was a fairly quick illness and her dependency on him
transferred to me. And so she lived with us for about six months, and then we
moved her into assisted living. My sister and I did.
[00:06:46] Marty Stevens-Heebner: And let's talk about your professional work,
right? Gently Guided talk about the focus of your work, because that dovetails
nicely with finding the assisted living for your mother.
[00:06:57] Lisa Bricker: Well, gently guided, we provide senior living [00:07:00]
options for families at no charge. And over the years I have evolved into an
Alzheimer's and dementia placement specialist. I've been doing this work for about
nine years.
[00:07:11] Marty Stevens-Heebner: And you're so good at it. Your personality is
so warm. You're clear about what you do and having lived through it. It must be in a
way, a relief when your clients understand that you've lived through it yourself. And
to have that personal insight.
[00:07:24] Lisa Bricker: It's an instant connection and, “Oh my gosh, I'm so glad
you get it.” And there's not a lot I haven't seen over the years. There's patterns
that you see, everybody may be different, but the way it shows up in many ways,
there are patterns to. Okay.
[00:07:40] Marty Stevens-Heebner: Can you describe those patterns a little bit?
That's fascinating.
[00:07:44] Lisa Bricker: I'll just shift over to once someone is diagnosed, it
becomes, I believe less of a medical issue, and now it becomes a quality-of-life
issue. And you're wanting to match that with that person's personality. Are they
social or the [00:08:00] introverted? What environment are there going to be
thriving? And I like to think of myself as a matchmaker and because we're such a
small company, there's only three of us and we're very hands on. We have great
relationships with our providers and that instills a lot of trust for our families.
So we're not bombarding them with a lot of options. I may give them three or less.
Sometimes there's only one available, but we don't want to overwhelm them. We're
here to take it off their shoulders and give them some peace of mind.
[00:08:31] Marty Stevens-Heebner: I know that they are, shall we say, large
corporate entities that advertise a lot on TV who have these big platforms. What's
the difference between dealing with a company like that, versus working with you?
[00:08:43] Lisa Bricker: We always try to say, stay off the internet, searching too
much, and it can be very tricky. Most of the people who work for these companies
have never set foot in any of the options.
[00:08:54] Marty Stevens-Heebner: In the board and cares, and the assisted
living and memory care area.
[00:08:58] Lisa Bricker: And they don't [00:09:00] necessarily tour with their
clients, either. They're not as hands on, and it's not fair. A family is so overwhelmed
to begin with that they don't need a list of 10 or 20 options that may not be
inappropriate match to begin with. We offer a personalized service, a very
concierge.
[00:09:20] Marty Stevens-Heebner: Really listening a lot to understand the
subtleties. And again, you've gone through it yourself.
[00:09:25] Lisa Bricker: The beauty of our business is that we're referral by
referral. So our referrals come from professionals, attorneys, fiduciaries, other
communities, so that when someone calls. One of the first things they usually say is
you come highly recommended and we're often running.
[00:09:41] Marty Stevens-Heebner: It really is shepherding, isn't it? Because
people are often desperate is a strong word, but sometimes they really are
desperate to find any kind of help that they can trust to lead them through this dark
tunnel.
[00:09:53] Lisa Bricker: It's frustrating. It's confusing. They're overwhelmed.
They're dealing with so many different things. At the same time. [00:10:00] I
evolved into this work because I was trying to find purpose and meaning for myself.
Because nothing makes sense. If you're dealing with a loved one and living with a
loved one with Alzheimer's or dementia, logic is now out the window, you have to
find a way to cope. And it's so frustrating.
At one point to now, after Gary was diagnosed, I ended up having to call 9 1 1 on
myself. My heart rate was so high. I was just so stressed out and you're thinking
here, come the paramedic. I remember them coming in and I'm saying, my husband
has Alzheimer's and he needs attention too. And we left the house.
I left my purse, my cell, because no, one's looking out for the caregiver for you. And
that was a huge wake-up call because the doctor came in the next morning and
said to me, you need to make some changes. This is a long journey. He was like an
angel showing up in that [00:11:00] room that day. It hit me right between the eyes,
and I realized that this is a long journey and I had to take care of myself.
[00:11:08] Marty Stevens-Heebner: What did he recommend to you?
[00:11:10] Lisa Bricker: He didn't really recommend anything. He scared the heck
out, but at the same time I was in a hospital bed with an I.V. of Ativan saying, “Wow
- this is like a vacation.” What’s wrong with this picture, right? Taking care of the
caregiver.
[00:11:27] Marty Stevens-Heebner: And you lead some support groups.
[00:11:30] Lisa Bricker: I lead a support group through the Kensington...
[00:11:33] Marty Stevens-Heebner: ...which is an assisted living community...
[00:11:36] Lisa Bricker: ...and memory care. That's correct. They're fantastic. We
are open to anyone who has a family member or loved one that has Alzheimer's or
dementia.
[00:11:46] Marty Stevens-Heebner: And that's so important because you're just
saying, who's looking after the caregiver and you were in that situation in this way,
with the support group, people trade numbers, they help each other and you just
know you're not alone.
[00:11:57] Lisa Bricker: It's a community. We have a core group that [00:12:00] is
amazing. And we're, peer-to-peer when they were asking me to be a facilitator for
this support group. I said, I can't, I want to have them. Well, that's why we want
you. And it's turned out to be one of the most fulfilling things I've ever done in my
life. It's incredible. And we just had someone find us from New York.
[00:12:23] Marty Stevens-Heebner: Wow. That is so challenging when you live
somewhere else. My dad lived in Buffalo about the only thing that wasn't wrong with
him was his mind sometimes to my chagrin, he did have all his faculties to the end,
but trying to help take care of him from Los Angeles. When he was in Buffalo, I went
back and forth a lot, but it must have been such a relief when that person from New
York spoke to you and realize that.
[00:12:46] Lisa Bricker: Yes now it feels really good. We welcome anyone that
comes into the group.
[00:12:51] Marty Stevens-Heebner: Let's talk about some of the work that you do
for Alzheimer's greater Los Angeles.
[00:12:55] Lisa Bricker: My husband, Gary, his symptoms started very subtly in
2005. [00:13:00] He started having these episodes in about 2007. He'd get pressure
and hot and cold, and it was affecting his short-term memory. So we started seeing
a neurologist and they just said, must be seizure. And we found another neurologist,
same thing, because he was so young, he was 57 by them and it just continued
slowly. Then he lost his job in 2010.
[00:13:27] Marty Stevens-Heebner: And this was because...
[00:13:28] Lisa Bricker: ...of performance issues. He couldn't keep up. There were
little signs. He had gotten lost a couple of times. And then we moved several times.
He took another job and that lasted about six months. Nothing is definitely wrong.
He went to a neuropsychologist for testing and they diagnosed MCI - mild cognitive
impairment.
We were referred to neurologist number three. That's how we got the diagnosis in
late 2012. So that took seven years to get to that [00:14:00] point. And at that
point, both of us were scrambling and struggling. He was overcompensating with
blame and humor, which can only go so far. Very, very stressful on both of us
financially.
We were bleeding money, just a lot of costs. And so once he got the diagnosis, it
was like, “Oh my gosh - we had an answer.” So I reached out to a support group in
the local area. It was a general support group initially. I knew that I needed
something specific. I was told there was a support group through Alzheimer's Los
Angeles.
I reached out and we actually had to wait for a support group to form for enough
people. That was their memory club. We both went, Gary went kicking and
screaming. There's a lot of shame with it.
[00:14:48] Marty Stevens-Heebner: A big stigma and embarrassment, because
I'm sure he's used to being in this very functioning individual.
[00:14:53] Lisa Bricker: He had been a real estate attorney or real estate broker.
Very intelligent, very smart. [00:15:00] Well-read this was the worst insult and the
scariest diagnosis. He didn't want to share. And I just started negotiating. Can I tell
one person, can I tell two, but we ended up going to memory club and the design of
their meetings are you have an educational hour and then the next hour you split
up and they go with the diagnosed and the caregivers go into their own group. And
it's fantastic.
[00:15:26] Marty Stevens-Heebner: I was going to say that's a great idea.
[00:15:28] Lisa Bricker: And he loved it because they could relate to one another.
They could talk about it. They could talk about their feelings, they could talk about
their fears. They could learn new tools to cope. There are tools that you can do, and
he downloaded the apps to stimulate his brain. So there were a lot of things he
could do and it gave me an outlet to, oh, I bet it gave us a social life, too.
[00:15:51] Marty Stevens-Heebner: And I'm sure it's such a relief for both. Let's
talk about some of the work you do for Alzheimer's Los Angeles. You're a public
policy advocate,
[00:15:58] Lisa Bricker: caregiver advocate, and that's [00:16:00] part of the
service to make sure that the caregiver is really taking care of themselves. It gave
Gary and I a purpose, and we actually advocated for public policy. Gary and I
actually went up to Sacramento. He testified before a Senate hearing committee
and helped pass the bill.
[00:16:18] Marty Stevens-Heebner: Wow. And that's at the state level in
California.
[00:16:21] Lisa Bricker: He was able to convey how this disease had affected him.
It was really powerful and he was really proud of themselves because he always
said, I want to be part of the solution and not part of the problem.
[00:16:36] Marty Stevens-Heebner: It's very brave. He had Alzheimer's but that
was something he could do because he had Alzheimer's. Do you remember what
the policy was? They got past.
[00:16:44] Lisa Bricker: Yes. It was asking doctors to make sure they hand out
resources to those who are diagnosed or experiencing cognitive decline.
[00:16:53] Marty Stevens-Heebner: Nothing worse. I can only imagine then being
given that diagnosis and saying, okay, thanks - bye-bye
[00:16:58] Lisa Bricker: That's a whole other [00:17:00] subject because
Alzheimer's and dementia goes against everything a doctor ever learned in medical
school. There's no cure. There's no treatment. There's no protocol. It's very
ambiguous and it's emotional. So it's very awkward. It's hard. It's hard for everyone.
[00:17:18] Marty Stevens-Heebner: It really is. And I'm curious with not just
Gary, but your other relatives, did you notice change in their personalities? Can you
give me an example of that?
[00:17:26] Lisa Bricker: I just started getting quieter because they can't keep up
with certain conversations. The world starts becoming a little more overwhelming to
them. There's subtle changes and the filters go off too. So you never know what
might come out of the mouth of babes, right? And they start focusing differently.
There are certain stages. I put everything in basically three stages of early stage
where you really want them to thrive. That's the time to really catch it so that they
can maintain that cognitive [00:18:00] level for as long as possible to be stimulated.
[00:18:04] Marty Stevens-Heebner: And what did you start seeing with mid-stage
dementia?
[00:18:06] Lisa Bricker: More care needs, showering, bathing, grooming dressing.
That's a hard bridge to cross because they're used to being independent to
maintain someone's dignity throughout the process is so key.
[00:18:20] Marty Stevens-Heebner: And in late-stage dementia, there's an
obvious and profound disconnection for obvious reasons. That's the disease, but
people forget that there's still life in there. What kinds of things did you do? When
do you encourage your clients to do, to keep people as present as possible for as
long as possible?
[00:18:39] Lisa Bricker: It's just really important to be present with them. There is
no greater teacher to be in the present moment than this disease, because that's
where the are - in the present moment. And if we meet them in that moment with
compassion and patience, it's amazing what happens. They thrive in calm
environments, [00:19:00] safe environments, trusting environments, because it's
scary to lose control. And, at some level, they are very aware that they're losing
control.
[00:19:10] Marty Stevens-Heebner: And trying to understand their anxiety.
[00:19:12] Lisa Bricker: If they become overwhelmed, they're losing control. They
may not be able to speak their words anymore. Their feelings may be confused.
[00:19:23] Marty Stevens-Heebner: They're bottled up because they can't
articulate what they're feeling.
[00:19:26] Lisa Bricker: That's right. So the anxiety can show up in a lot of
different ways.
[00:19:32] Marty Stevens-Heebner: And another thing in addition to being a
place where they can trust people, it's also about being accepted wherever they
are, because sometimes they think you're the daughter or with somebody who's
older, their husband who passed away 20 years ago and not telling them that he's
been dead for however long, but rather just being there. And for that moment being
in their story.
[00:19:53] Lisa Bricker: It's their journey, not our journey. That's beautiful. We
want to follow them on their journey and [00:20:00] to create that story so that they
have peace of mind. I was fascinated towards the end of Gary's life. Gary knew me.
He knew his daughters.
When he went on hospice, it was for six months. And I asked them, how many of
your patients have Alzheimer's or dementia of some sort. And they said about half.
And I said, how many of your patients recognize their loved ones? And they said
about a house. And I thought that was really amazing. That is extraordinary
because there's that belief they don't recognize you anymore. And they may not.
But your essence is there and we're human beings just because we can't
communicate. We're still there.
[00:20:46] Marty Stevens-Heebner: It's so important to be yourself, especially if
you're a family member, then as much as you can be given the situation, because
it's not just what you look like. That is you, like you said, the.
If you're behaving differently, you'll seem like a [00:21:00] stranger. I remember
actually being at the board and care your husband was at towards the end, and it
was such a nice peaceful place and he was common peaceful. And that was lovely.
You gave that to him. Yeah, that was important. It was important. So as things
progress with Gary and with your clients and their loved ones, I'm sure people have
to go in and out of the hospital or a rehabilitation facility. What do people need to
go in for?
[00:21:30] Lisa Bricker: That is a great question because that's an adventure. All
of its own. When someone with Alzheimer's or dementia has to go into the hospital,
they don't know why they're there. Very confusing for them because now they're in
a new environment. It's really tough if they have to have an Ivy or need assistance
of any kind.
I remember Gary had to be in the hospital for a little over a week. I couldn't leave
the room until under four doctor came in to either [00:22:00] change him or do
some procedure on him. And then I could take a break. Even then the doctors or a
nurse, even if simple thing of taking them to the restroom or having them shower,
they don't realize they don't know how to do that by themselves necessarily, or that
they need assistance with that every step of the way.
So I found myself training them or just trying to share with them how to approach
him and that he needed more assistance. This is why I do what I do, because I didn't
have somebody like me along the way to show me I want to be there for somebody
as I would have wanted somebody there to be with me.
There are resources. We don't even know that they're there. It's really about
learning how to ask for things and how to navigate around that. And that's the most
confusing part. The same goes for skilled nursing facilities and rehab as well.
Sometimes hospitals have sitters. You can hire them.
[00:22:59] Marty Stevens-Heebner: What do you [00:23:00] love about what you
do?
[00:23:01] Lisa Bricker: I love the relationships from the providers that we work
with and then the families that I work with, we get into some amazingly deep
conversations. We're just sharing and we're talking and we're understanding
because not everybody understands the world of a family caregiver who has to deal
with that.
Sometimes people on the outside, even if they're a family member, if they're not
directly involved in it, they don't quite understand. They can have opinions and
suggestions, but unless you're in it, nobody really gets it. And how difficult it is.
There was a book that I read several years ago called loving someone who has
dementia by Dr.
Pauline boss. It's all about the caregiver, even though it was written several years
ago, one of the first things she says in the book is that 63% of caregivers pass away
before their loved one does. And that [00:24:00] hit me right between the eyes. I
have taken that seriously. You can't take care of yourself enough.
You have to take care of your own health or you'll go down the tube. And now where
are you? That's the important part, but I love the sharing, love the connection and
the fulfillment of finding that right match for a family
[00:24:22] Marty Stevens-Heebner: The right community for them.
[00:24:24] Lisa Bricker: And knowing that I'm part of our greater community,
where my services are trusted. That's such a rewarding feeling, knowing that as you
will agree, our working worlds are very small and tight knit. We rely on each other
as resources because who are we without our resources? We can't educate enough.
[00:24:48] Marty Stevens-Heebner: My big goal with this podcast is to get people
talking and thinking about it and sharing expertise, whether you're a professional
working with older adults and their families or the caregiver [00:25:00] at home.
Emotionally just knowing you're not the only one, I guess it's like child rearing and
that every day is different.
[00:25:06] Lisa Bricker: That's right. I used to feel like I could just barely get
oxygen some of my darkest days. And when I talk about this with other family
caregivers, I'm feeling like I was living in a phone booth on the sidewalk, watching
the world, pass me.
The isolation is really detrimental. It's so easy to become isolated and see people
going on with their lives. Literally, I'm just now learning to have a life you have to
relearn, and re-enter the world. That's something that you never get over. That's
the bond we all share.
[00:25:41] Marty Stevens-Heebner: And all these things they happen. And it's
not going to go back to normal. It will be a new kind of normal because so much has
changed as a result. What do you wish people knew about the work you do and
what kind of questions should they be asking someone if they're interviewing
people who do placement? Well,
[00:25:58] Lisa Bricker: I think it's really [00:26:00] important to create a circle of
trusted advisors for yourself. My coaching background helps me with listening and
being present for people and really taking a stand that they honor themselves as
they move through this process. I think it's so important to trust yourself and you
can lose sight of that. It's so important to stay connected any way you can with your
own intuition, because there's no map, there are no instructions.
So you have to figure it out as best as you can to move through it because there's
no right answer. The guilt, the torment of making that decision to place your loved
one is probably the hardest decision you'll ever have to make in your whole life.
[00:26:44] Marty Stevens-Heebner: And yet finding that perfect community where
you can place them is such a relief.
[00:26:49] Lisa Bricker: And many times family are at odds with their opinions.
And there's a lot of things that are happening at the same time. I believe being a
caregiver is a [00:27:00] leadership position. Pull yourself up by your bootstraps.
[00:27:03] Marty Stevens-Heebner: You're a professional certified coach for 25
years. People are completely baffled. And so often the huge mass of emotions that
surround them end up triggering bickering and fights and everything.
[00:27:17] Lisa Bricker: It's almost like people's unresolved childhood issues can
come up in the dynamics of this. It is the opportunity to heal. If you can be open to
that, say it's a son or a daughter watching the. Parent decline. It's giving up that
role of being the child and stepping into more of a parent role. Some people go
through it naturally and some people can't see it. Some people struggle with it, but
somebody has to take.
[00:27:47] Marty Stevens-Heebner: Yes. As the adult child, you go from being
the one cared for, to the one caring for the parent, you were dependent on them.
Now they're dependent on you, whether they want to be or not.
[00:27:57] Lisa Bricker: And we see all types of different [00:28:00] qualities of
relationships that have happened. Sometimes they didn't get along so well yet they
are entrusted with the care of a loved one. All of this journey as a family, caregiver
has huge part of ambiguous loss grief. Dr. Boss's book is all about ambiguous loss
because it's grief without closure and you have to learn to live in uncertainty.
If there's anything I've practiced in the last 16 years is living in uncertainty. It's a
great practice because it's not easy, but it's walking that tight rope of being in the
present moment as much as possible.
[00:28:36] Marty Stevens-Heebner: Mindfulness, Lisa, thank you so much for
your openness and for all the extraordinary work you do.
[00:28:43] Lisa Bricker: Thank you, Marty.
Marty Stevens-Heebner: Thank you so much for listening to, How to Move Your
Mom and still be on speaking terms afterward. Please visit
www.howtomoveyourmom.com for more information about this episode and for
additional podcast episodes featuring other extraordinary guests and conversations.
Until next time, this is your very grateful host Marty Stevens-Heebner