my parents died suddenly and when they were very young and it was heartbreaking
were very young and it was heartbreaking
were very young and it was heartbreaking I felt cheated but if there was a silver
I felt cheated but if there was a silver
I felt cheated but if there was a silver lining to that tragedy I told myself
lining to that tragedy I told myself
lining to that tragedy I told myself it’s not the chance of me becoming a
it’s not the chance of me becoming a
it’s not the chance of me becoming a caregiver for an ill aging parent was
caregiver for an ill aging parent was
caregiver for an ill aging parent was zero ironically 20 years later what do I
zero ironically 20 years later what do I
zero ironically 20 years later what do I become but an expert in Aging and
become but an expert in Aging and
become but an expert in Aging and dementia I work with people with
dementia I work with people with
dementia I work with people with Alzheimer’s disease and I counsel their
Alzheimer’s disease and I counsel their
Alzheimer’s disease and I counsel their caregivers and when caregivers would
caregivers and when caregivers would
caregivers and when caregivers would tell me their stories about their
tell me their stories about their
tell me their stories about their anguish their frustration and their
anguish their frustration and their
anguish their frustration and their exhaustion I would think to myself well
exhaustion I would think to myself well
exhaustion I would think to myself well maybe I am really the lucky one for a
maybe I am really the lucky one for a
maybe I am really the lucky one for a long time I felt guilty about that
long time I felt guilty about that
long time I felt guilty about that because although I could totally be
because although I could totally be
because although I could totally be there for caregivers clinically I really
there for caregivers clinically I really
there for caregivers clinically I really couldn’t personally relate to their
couldn’t personally relate to their
couldn’t personally relate to their experiences and then Marilyn got sick
experiences and then Marilyn got sick
experiences and then Marilyn got sick Marilyn was someone who I befriended
Marilyn was someone who I befriended
Marilyn was someone who I befriended when I was in my 20s who was a mentor to
when I was in my 20s who was a mentor to
when I was in my 20s who was a mentor to me and her children were not equipped to
me and her children were not equipped to
me and her children were not equipped to take care of her so I stepped up to the
take care of her so I stepped up to the
take care of her so I stepped up to the plate
plate
plate hey who better than the expert right so
hey who better than the expert right so
hey who better than the expert right so I started to care for her I found her
I started to care for her I found her
I started to care for her I found her assisted living I found her doctors I
assisted living I found her doctors I
assisted living I found her doctors I spoke with her caregivers and I got her
spoke with her caregivers and I got her
spoke with her caregivers and I got her those little but important things like
those little but important things like
those little but important things like raised toilet seats and I went to visit
raised toilet seats and I went to visit
raised toilet seats and I went to visit her to make sure that she was okay but
her to make sure that she was okay but
her to make sure that she was okay but as time went on and she got worse then I
as time went on and she got worse then I
as time went on and she got worse then I would wake up in the middle of the night
would wake up in the middle of the night
would wake up in the middle of the night worrying about her and I became anxious
worrying about her and I became anxious
worrying about her and I became anxious and stressed out I became utterly
and stressed out I became utterly
and stressed out I became utterly consumed by her situation so I go to my
consumed by her situation so I go to my
consumed by her situation so I go to my therapist yeah the therapist goes to her
therapist yeah the therapist goes to her
therapist yeah the therapist goes to her therapist I said to her what is wrong
therapist I said to her what is wrong
therapist I said to her what is wrong with me I should be able to handle this
with me I should be able to handle this
with me I should be able to handle this and she looked at me and said hello
and she looked at me and said hello
and she looked at me and said hello you have caregiver stress and it didn’t
you have caregiver stress and it didn’t
you have caregiver stress and it didn’t dawn on me until that very moment that I
dawn on me until that very moment that I
dawn on me until that very moment that I had fallen down the rabbit hole but I
had fallen down the rabbit hole but I
had fallen down the rabbit hole but I can tell you this I never truly
can tell you this I never truly
can tell you this I never truly appreciated the enormity the stress and
appreciated the enormity the stress and
appreciated the enormity the stress and weight of caregiving until I became when
weight of caregiving until I became when
weight of caregiving until I became when myself right now in the United States
myself right now in the United States
myself right now in the United States there are five and a half million people
there are five and a half million people
there are five and a half million people with Alzheimer’s disease or another type
with Alzheimer’s disease or another type
with Alzheimer’s disease or another type of dementia there are about 14 million
of dementia there are about 14 million
of dementia there are about 14 million people caring for those patients and
people caring for those patients and
people caring for those patients and caregivers provide 18 billion that’s
caregivers provide 18 billion that’s
caregivers provide 18 billion that’s billion with a B hours of unpaid care
billion with a B hours of unpaid care
billion with a B hours of unpaid care what doesn’t paid mean it means that
what doesn’t paid mean it means that
what doesn’t paid mean it means that people like you and I are doing the
people like you and I are doing the
people like you and I are doing the caregiving that’s spouses partners
caregiving that’s spouses partners
caregiving that’s spouses partners children siblings and yes friends and
children siblings and yes friends and
children siblings and yes friends and all those caregivers want to do is a
all those caregivers want to do is a
all those caregivers want to do is a good job in taking care of people a
good job in taking care of people a
good job in taking care of people a caregiver is anyone who cares for
caregiver is anyone who cares for
caregiver is anyone who cares for another person and helps them who’s
another person and helps them who’s
another person and helps them who’s dependent upon them and caregiving
dependent upon them and caregiving
dependent upon them and caregiving happens along a continuum and anywhere
happens along a continuum and anywhere
happens along a continuum and anywhere along that continuum it can be taxing
along that continuum it can be taxing
along that continuum it can be taxing and burdensome so on the one end of the
and burdensome so on the one end of the
and burdensome so on the one end of the continuum you have the people that are
continuum you have the people that are
continuum you have the people that are in the trenches of day-to-day caregiving
in the trenches of day-to-day caregiving
in the trenches of day-to-day caregiving they live with the person they provide
they live with the person they provide
they live with the person they provide face-to-face care like getting people in
face-to-face care like getting people in
face-to-face care like getting people in and out of bed and taking them to
and out of bed and taking them to
and out of bed and taking them to doctors and bathing and cooking and
doctors and bathing and cooking and
doctors and bathing and cooking and they’re there all hours of the day
they’re there all hours of the day
they’re there all hours of the day taking care of the patient on the other
taking care of the patient on the other
taking care of the patient on the other end of the continuum you have the folks
end of the continuum you have the folks
end of the continuum you have the folks that orchestrate the care right they
that orchestrate the care right they
that orchestrate the care right they find the doctors they hire the
find the doctors they hire the
find the doctors they hire the caregivers they manage the finances and
caregivers they manage the finances and
caregivers they manage the finances and they get those calls at 3:00 a.m. when
they get those calls at 3:00 a.m. when
they get those calls at 3:00 a.m. when there is an emergency and they all are
there is an emergency and they all are
there is an emergency and they all are trying to boot do the best job they can
trying to boot do the best job they can
trying to boot do the best job they can do but one thing about caregiving the
do but one thing about caregiving the
do but one thing about caregiving the good news is that most people can learn
good news is that most people can learn
good news is that most people can learn the skills they need to be good
the skills they need to be good
the skills they need to be good caregivers but the not-so-good news
caregivers but the not-so-good news
caregivers but the not-so-good news is that once they become caregivers
is that once they become caregivers
is that once they become caregivers people are allows e at taking care of
people are allows e at taking care of
people are allows e at taking care of themselves and that’s not good
themselves and that’s not good
themselves and that’s not good that’s because caregiving can make you
that’s because caregiving can make you
that’s because caregiving can make you sick being a caregiver can make you sick
sick being a caregiver can make you sick
sick being a caregiver can make you sick in fact it can kill you and this applies
in fact it can kill you and this applies
in fact it can kill you and this applies to all types of caregivers not just
to all types of caregivers not just
to all types of caregivers not just those caring for someone with
those caring for someone with
those caring for someone with Alzheimer’s disease caregivers are at
Alzheimer’s disease caregivers are at
Alzheimer’s disease caregivers are at higher risk for things like heart attack
higher risk for things like heart attack
higher risk for things like heart attack cancer immune system dysfunction and
cancer immune system dysfunction and
cancer immune system dysfunction and depression and the older caregivers
depression and the older caregivers
depression and the older caregivers they’re at increased risk for death and
they’re at increased risk for death and
they’re at increased risk for death and some even die before they’re afflicted
some even die before they’re afflicted
some even die before they’re afflicted loved one does so learning to cope with
loved one does so learning to cope with
loved one does so learning to cope with the caregiver situation learning care
the caregiver situation learning care
the caregiver situation learning care givers South care is essential and I’ve
givers South care is essential and I’ve
givers South care is essential and I’ve studied this through research of your
studied this through research of your
studied this through research of your personal experience and I can share five
personal experience and I can share five
personal experience and I can share five things with you to help you ease that
things with you to help you ease that
things with you to help you ease that journey of caregiving and the way I
journey of caregiving and the way I
journey of caregiving and the way I remember them and this might work for
remember them and this might work for
remember them and this might work for you is as super s su P are the first S
you is as super s su P are the first S
you is as super s su P are the first S is sand don’t stick your head in it if
is sand don’t stick your head in it if
is sand don’t stick your head in it if you notice that your loved one is
you notice that your loved one is
you notice that your loved one is repeating himself over and over again if
repeating himself over and over again if
repeating himself over and over again if your mother gets lost going to the
your mother gets lost going to the
your mother gets lost going to the grocery store or burns up pots on the
grocery store or burns up pots on the
grocery store or burns up pots on the stove stop making excuses for them and
stove stop making excuses for them and
stove stop making excuses for them and please don’t do the denial thing I had
please don’t do the denial thing I had
please don’t do the denial thing I had one client who would insist about her
one client who would insist about her
one client who would insist about her father oh he’s okay he’s just old but
father oh he’s okay he’s just old but
father oh he’s okay he’s just old but all the while her beloved father is
all the while her beloved father is
all the while her beloved father is going downhill before her very eyes and
going downhill before her very eyes and
going downhill before her very eyes and some caregivers become co-pilots for
some caregivers become co-pilots for
some caregivers become co-pilots for their loved one while driving because
their loved one while driving because
their loved one while driving because they can’t bear to take that away from
they can’t bear to take that away from
they can’t bear to take that away from them but that kind of denial can lead to
them but that kind of denial can lead to
them but that kind of denial can lead to an accident or even the tragedy so
an accident or even the tragedy so
an accident or even the tragedy so if you see that your loved one is doing
if you see that your loved one is doing
if you see that your loved one is doing something that surprises you that
something that surprises you that
something that surprises you that concerns you do something about it
concerns you do something about it
concerns you do something about it you can google their symptoms go to the
you can google their symptoms go to the
you can google their symptoms go to the website of the Alzheimer’s Association
website of the Alzheimer’s Association
website of the Alzheimer’s Association and don’t be afraid to talk to your
and don’t be afraid to talk to your
and don’t be afraid to talk to your loved one about about your concerns and
loved one about about your concerns and
loved one about about your concerns and go to the doctor with them for an
go to the doctor with them for an
go to the doctor with them for an evaluation and this is important because
evaluation and this is important because
evaluation and this is important because we now know that early treatment of
we now know that early treatment of
we now know that early treatment of dementia can help reduce people’s
dementia can help reduce people’s
dementia can help reduce people’s symptoms it can slow the progression of
symptoms it can slow the progression of
symptoms it can slow the progression of disease and help stave off your stress
disease and help stave off your stress
disease and help stave off your stress as a caregiver the second s stands for
as a caregiver the second s stands for
as a caregiver the second s stands for support go to a support group caregiving
support go to a support group caregiving
support go to a support group caregiving is hard and you can’t do that by
is hard and you can’t do that by
is hard and you can’t do that by yourself and caregivers will tell you
yourself and caregivers will tell you
yourself and caregivers will tell you they’ll tell you that their friends
they’ll tell you that their friends
they’ll tell you that their friends don’t come around so much anymore and
don’t come around so much anymore and
don’t come around so much anymore and they suffer and they are isolated and
they suffer and they are isolated and
they suffer and they are isolated and they have thoughts that make them
they have thoughts that make them
they have thoughts that make them uncomfortable like I wish my mom would
uncomfortable like I wish my mom would
uncomfortable like I wish my mom would die and this was all over with and some
die and this was all over with and some
die and this was all over with and some people develop resentment towards the
people develop resentment towards the
people develop resentment towards the person they’re caring for and you’ll
person they’re caring for and you’ll
person they’re caring for and you’ll feel awful when you have those feelings
feel awful when you have those feelings
feel awful when you have those feelings but they do come up and that’s why you
but they do come up and that’s why you
but they do come up and that’s why you need to go to a support group because
need to go to a support group because
need to go to a support group because people in support groups have all been
people in support groups have all been
people in support groups have all been there they understand those feelings
there they understand those feelings
there they understand those feelings they feel those feelings and they know
they feel those feelings and they know
they feel those feelings and they know that even though you feel awful for
that even though you feel awful for
that even though you feel awful for having them that those thoughts are
having them that those thoughts are
having them that those thoughts are coming from a place of distress and
coming from a place of distress and
coming from a place of distress and sadness you use for uplift every day you
sadness you use for uplift every day you
sadness you use for uplift every day you need to find a way to uplift yourself
need to find a way to uplift yourself
need to find a way to uplift yourself when Marilyn was dying and I went to
when Marilyn was dying and I went to
when Marilyn was dying and I went to visit her it was painful to see her in
visit her it was painful to see her in
visit her it was painful to see her in her condition but I felt good about
her condition but I felt good about
her condition but I felt good about being her friend and acting towards her
being her friend and acting towards her
being her friend and acting towards her like a daughter I was able to do for her
like a daughter I was able to do for her
like a daughter I was able to do for her would I had no opportunity to do for my
would I had no opportunity to do for my
would I had no opportunity to do for my own parents and that was uplifting
own parents and that was uplifting
own parents and that was uplifting and caregivers will tell you even when
and caregivers will tell you even when
and caregivers will tell you even when their loved one is being cranky or
their loved one is being cranky or
their loved one is being cranky or difficult or demanding they’re still
difficult or demanding they’re still
difficult or demanding they’re still uplifted by the thought that they’re
uplifted by the thought that they’re
uplifted by the thought that they’re caring for them that they’re performing
caring for them that they’re performing
caring for them that they’re performing an act of love
an act of love
an act of love fulfilling a sense of duty and making
fulfilling a sense of duty and making
fulfilling a sense of duty and making their life better and caregivers have
their life better and caregivers have
their life better and caregivers have told me that their life is absolutely
told me that their life is absolutely
told me that their life is absolutely transformed by the experience and some
transformed by the experience and some
transformed by the experience and some develop a more positive view of life and
develop a more positive view of life and
develop a more positive view of life and when it’s all over
when it’s all over
when it’s all over they don’t regret what they did so in
they don’t regret what they did so in
they don’t regret what they did so in the days when your loved one has clarity
the days when your loved one has clarity
the days when your loved one has clarity when they smile when they’re funny even
when they smile when they’re funny even
when they smile when they’re funny even if they don’t mean to be and when they
if they don’t mean to be and when they
if they don’t mean to be and when they show you that glimmer of their old self
show you that glimmer of their old self
show you that glimmer of their old self savor those moments and uplift yourself
savor those moments and uplift yourself
savor those moments and uplift yourself with those feelings especially on the
with those feelings especially on the
with those feelings especially on the days when you want to quit P PS for
days when you want to quit P PS for
days when you want to quit P PS for personal as in don’t take things
personal as in don’t take things
personal as in don’t take things personally the bench is a brain disease
personally the bench is a brain disease
personally the bench is a brain disease and it causes people to say things that
and it causes people to say things that
and it causes people to say things that are untrue full paranoid weird things
are untrue full paranoid weird things
are untrue full paranoid weird things that they don’t mean I had a client
that they don’t mean I had a client
that they don’t mean I had a client whose wife accused him of cheating on
whose wife accused him of cheating on
whose wife accused him of cheating on her with her caregiver and he was
her with her caregiver and he was
her with her caregiver and he was shocked by that but when I was able to
shocked by that but when I was able to
shocked by that but when I was able to remind him that paranoid thoughts are
remind him that paranoid thoughts are
remind him that paranoid thoughts are part of Alzheimer’s disease he no longer
part of Alzheimer’s disease he no longer
part of Alzheimer’s disease he no longer took that personally and sadly for many
took that personally and sadly for many
took that personally and sadly for many of you there will come a time when your
of you there will come a time when your
of you there will come a time when your loved one no longer recognizes you and
loved one no longer recognizes you and
loved one no longer recognizes you and that will crush you and on that day you
that will crush you and on that day you
that will crush you and on that day you will need to remind yourself don’t take
will need to remind yourself don’t take
will need to remind yourself don’t take it personally
it personally
it personally finally our our respite find respite for
finally our our respite find respite for
finally our our respite find respite for the people in the trenches of day-to-day
the people in the trenches of day-to-day
the people in the trenches of day-to-day caregiving respite means completely
caregiving respite means completely
caregiving respite means completely getting away from the caregiver
getting away from the caregiver
getting away from the caregiver situation for at least 20 minutes a day
situation for at least 20 minutes a day
situation for at least 20 minutes a day and this is non-negotiable
and this is non-negotiable
and this is non-negotiable you can read a book go for a walk grab a
you can read a book go for a walk grab a
you can read a book go for a walk grab a cup of coffee
cup of coffee
cup of coffee anything anything that makes you feel
anything anything that makes you feel
anything anything that makes you feel better and caregivers please give
better and caregivers please give
better and caregivers please give yourself permission to be helped I know
yourself permission to be helped I know
yourself permission to be helped I know of a 90 year old woman and she was on
of a 90 year old woman and she was on
of a 90 year old woman and she was on the verge of physical and a mental
the verge of physical and a mental
the verge of physical and a mental emotional collapse she was the sole
emotional collapse she was the sole
emotional collapse she was the sole caregiver for her 95 year old husband
caregiver for her 95 year old husband
caregiver for her 95 year old husband and when she finally allowed herself to
and when she finally allowed herself to
and when she finally allowed herself to get a little help a little help with
get a little help a little help with
get a little help a little help with housekeeping hired a professional for a
housekeeping hired a professional for a
housekeeping hired a professional for a few hours a day she was able to cherish
few hours a day she was able to cherish
few hours a day she was able to cherish those last month’s of her husband’s life
for all types of caregivers there’s
for all types of caregivers there’s another type of respite it’s mental
another type of respite it’s mental
another type of respite it’s mental respite and I think of that as letting
respite and I think of that as letting
respite and I think of that as letting go of the small stuff when loved ones
go of the small stuff when loved ones
go of the small stuff when loved ones first come to me to evaluate their loved
first come to me to evaluate their loved
first come to me to evaluate their loved ones I mean when the family members
ones I mean when the family members
ones I mean when the family members first come to me and they’re they want
first come to me and they’re they want
first come to me and they’re they want me to evaluate their loved ones I hear
me to evaluate their loved ones I hear
me to evaluate their loved ones I hear them quizzing them on things like what
them quizzing them on things like what
them quizzing them on things like what did you have for dinner last night what
did you have for dinner last night what
did you have for dinner last night what are the names of your grandchildren and
are the names of your grandchildren and
are the names of your grandchildren and even though they mean well
even though they mean well
even though they mean well they’re maybe trying to bring them back
they’re maybe trying to bring them back
they’re maybe trying to bring them back into reality or they’re trying to
into reality or they’re trying to
into reality or they’re trying to exercise their memory they’re just
exercise their memory they’re just
exercise their memory they’re just reminding their loved ones of their
reminding their loved ones of their
reminding their loved ones of their problems and they’re making them feel
problems and they’re making them feel
problems and they’re making them feel worse now my clients mother who suffers
worse now my clients mother who suffers
worse now my clients mother who suffers from Alzheimer’s disease lost her
from Alzheimer’s disease lost her
from Alzheimer’s disease lost her husband of 62 years and at each visit
husband of 62 years and at each visit
husband of 62 years and at each visit she still asks where’s your father
she still asks where’s your father
she still asks where’s your father am i client who has learned to let go
am i client who has learned to let go
am i client who has learned to let go simply tells her he’s gone fishing mom
simply tells her he’s gone fishing mom
simply tells her he’s gone fishing mom which is something he really did like to
which is something he really did like to
which is something he really did like to do so she doesn’t correct her mom and
do so she doesn’t correct her mom and
do so she doesn’t correct her mom and she doesn’t remind her that her
she doesn’t remind her that her
she doesn’t remind her that her husband’s been dead for five years so
husband’s been dead for five years so
husband’s been dead for five years so find respite in your own way and learn
find respite in your own way and learn
find respite in your own way and learn to let go of the small stuff it’s
to let go of the small stuff it’s
to let go of the small stuff it’s liberating look
liberating look
liberating look caregiving is hard you’re watching a
caregiving is hard you’re watching a
caregiving is hard you’re watching a loved one deteriorate and I’m not gonna
loved one deteriorate and I’m not gonna
loved one deteriorate and I’m not gonna pretend that these five ways of coping
pretend that these five ways of coping
pretend that these five ways of coping are totally gonna eliminate your stress
are totally gonna eliminate your stress
are totally gonna eliminate your stress and your burden but they will sustain
and your burden but they will sustain
and your burden but they will sustain you through your journey they did for me
you through your journey they did for me
you through your journey they did for me when I was taking care of Maryland now I
when I was taking care of Maryland now I
when I was taking care of Maryland now I had a lot of knowledge but I had to do
had a lot of knowledge but I had to do
had a lot of knowledge but I had to do so much more I went to therapy to get
so much more I went to therapy to get
so much more I went to therapy to get support and I learned to uplift myself
support and I learned to uplift myself
support and I learned to uplift myself knowing that I was doing for her what I
knowing that I was doing for her what I
knowing that I was doing for her what I could never do for my parents and that
could never do for my parents and that
could never do for my parents and that was a huge source of satisfaction to me
was a huge source of satisfaction to me
was a huge source of satisfaction to me then and to this very day
then and to this very day
then and to this very day and when Maryland lost the mental
and when Maryland lost the mental
and when Maryland lost the mental clarity to hold a conversation and talk
clarity to hold a conversation and talk
clarity to hold a conversation and talk on the phone I had to remind myself not
on the phone I had to remind myself not
on the phone I had to remind myself not to take that personally and I found
to take that personally and I found
to take that personally and I found respite in letting go of the idea that
respite in letting go of the idea that
respite in letting go of the idea that she was going to get better if I can
she was going to get better if I can
she was going to get better if I can leave you with one thought it’s this
leave you with one thought it’s this
leave you with one thought it’s this love them but love yourself to support
love them but love yourself to support
love them but love yourself to support them but support yourself too and help
them but support yourself too and help
them but support yourself too and help them but allow yourself to be helped
them but allow yourself to be helped
them but allow yourself to be helped also take care of your stuff take super
also take care of your stuff take super
also take care of your stuff take super care of yourself thank you
care of yourself thank you
care of yourself thank you [Applause]
”
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