Yousuf Raza – Caring for Carers
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AI: Transcript ©
Okay, so what do we have on the
cards today?
So, your topic.
Very frankly, even into the final year of
my training.
I wasn't aware of that.
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Trying to cope with that and how they
are managing that.
So, even in fourth year.
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I completely agree with you.
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That was the easy way out.
So there is that.
But yes, not just psychiatric illnesses, but any
chronic illness, any longstanding illness, physical illness, if
a family member has it, then necessarily it
has an influence on the rest of the
family members.
Not just taking care of them is one
very important aspect, but just coming to terms
with the illness itself.
Somebody so close to us, somebody so beloved
to us, has just turned into another person
in so many different ways.
If we talk about psychological illnesses, the personality
changes a lot in these illnesses.
And even in physical illnesses, if someone has
had a stroke or other such illnesses, then
you're practically looking after a stranger, somebody who
was so near and dear to you.
So just coming to terms with, has this
happened to us?
Does this happen?
We always thought it would happen to someone
else.
So adjusting to that, it takes quite a
toll.
It takes quite a toll on people.
And Yusuf, it's not only adjusting to the
shock.
The continuous care, even if we believe that
there is no psychological distress, and even if
we believe that the person has accepted this,
and his family has accepted it, and it's
not a shock for them, the physical burden
is so much that it becomes a 24
-hour job.
If you have a stroke patient at home,
if you have a long-standing illness patient
at home, if you have a major psychiatric
illness patient, that physical burden becomes so much,
that leads to multiple physical disorders, and also
to multiple psychiatric disorders.
So even just playing with that physical burden,
is enough for a person, if I use
the Urdu word, to break it.
The psychological burden is beyond that.
Absolutely.
Azam, one thing that I'm personally lacking in
here, that we may have read stuff about
it, we may have talked to people about
it, we may have experienced it with our
patients, we may have brought their family in
confidence, and addressed their family's problems, but with
your permission, I would like to talk about
your personal experience.
Growing up in a family, in which your
brother had a genetic disease, which led for
him to become first, very, very dependent physically,
on constant care, and then eventually pass away.
So if you could share, especially what your
parents went through, and what you as a
family, because that perspective, that goes beyond any
professional opinion, or advice that we may have
to share.
So my brother, he died three years back,
in 2017, in January, at the age of
24.
But for the past, I think 18 years,
we knew that he had a disease, a
special type of muscular dystrophy, and that physical
burden was there, because gradually he just, he
slowly came to the bed, and he didn't
eat, didn't use the washroom, he was in
his electric wheelchair.
That physical burden was there, because his height,
he was around my height, he was six
feet, he was quite heavy, so taking him
to the washroom, and bringing him back, and
we siblings, after FSC, even in FSC, for
half a year, in the hostels, so my
younger brother, in the hostels, but the way
the parents, physically, secondly, so if I give
you an example, so in that time, in
those 8-10 years, my father's business, was
completely finished, and the reason for that was,
that my father, from home, from a 10
-15 minute drive, he couldn't go that far,
that if my brother had to go to
the washroom, what would my mother do from
behind?
So he had to be in 4-5
kilometers, he couldn't go that far, that if
something happened from behind, I would have to
come back, what would happen if I went
far?
So, and then, at night, even in the
last 1-2 years, he was unable to,
so he had to get up all night,
and do his exercises, and all that, but
I do not know, frankly, at that time,
I never thought about what was happening to
my parents, this was after the training in
psychiatry, and when I grew up, and especially
when I came after MBBS, and started living
at home, after 6-7 years, this was
one thing, but after that, the thing for
me, the thing for me, I am unable
to understand, how did my parents digest this
thing, that from the day one of his
diagnosis, they knew that this disease, has an
average age of 23-24 years, so, seeing
a young son like this every day, and
then knowing that there is no problem, so,
personally, I am unable to understand, that my
parents, because I have never seen them that
way, I have seen my mother, but generally,
I have never seen my father, So,
so um um um um um um umoyu
Thank you, sir.
I'll tell you something.
In our family, there is a child who
was born as a CP child, with cerebral
palsy.
We all know the prognosis.
We know that if he is alive, he
will be in a wheelchair and he won't
be able to do anything himself.
He won't be able to speak, he won't
be able to hear, he won't be able
to communicate.
In other words, his brain won't be able
to develop.
So, in my family, there was a child
like this.
In our relatives.
And they went to a professor of pediatrics.
A professor of pediatrics.
He did his checkup and his words were
these.
So, I'm giving an example that how doctors
generally try to console him.
His words were, Son, pray that if he
is alive, he will be fine.
So, the implicit meaning in this is that
if he can't get well, then why should
we pray for him?
So, that's how our general practitioners they console
the patient.
Exactly.
I mean, we would be at a complete
loss.
What to do, what to say.
In situations like this, in the way things
are.
Sara Ahmed is commenting.
Sara, I would request you to please post
those questions here.
We don't have access to your old questions.
If you can copy paste them here, we
will try to take them towards the end
of today's session.
Okay.
So, Azam, let's try to do the best
we can.
For the carers of people who have chronic
illnesses, long-standing debilitating illnesses, whether they are
psychological or physical, what do we have to
offer?
What should they know?
How should they be cared for?
So, we should divide it.
The carers should be divided into their physical
care and their psychological care.
Absolutely right.
So, first, physical care.
So, in physical care, So, what is happening
here?
As
a timetable,
So,
And more often than not, if you were
to explore, in people who have been subjected
to this unjust situation in the family, ranging
from both the extremes, or, you
know, that this is such a huge blessing
for them, that all of these religious statements
are going to be used, hiding behind which
is an escape from sharing the burden of
responsibility with that person.
And more often than not, this person is
going to be either a daughter or a
daughter-in-law.
This is almost going to be a given,
that this is part of your job description.
And you have to do it.
This is something that you have to do.
And there is no second opinion on that.
So, So,
They probably have children of their own, and
they probably have dependent children of their own.
How do they balance that?
Absolutely.
And the comment that Shiva just posted here,
thank you for sharing that.
Some people even go so far as to
say that you have been punished for a
sin.
That you have been put in this situation.
Or, even worse than that, if someone's child
has a birth defect, something like that, if
they are told that this is a punishment
for you, or a punishment for your sin,
that's just adding insult to injury.
Talk about not realizing what the other person
is going through.
So, the first thing that we're putting out
there, for the families to realize, that there
should not be just one person responsible for
care, no matter who that person is, no
matter how, you know, it is impossible to
conceive of the idea, that shouldn't be the
case.
There needs to be a reasonable rotation of
responsibility.
There needs to be breaks.
Ideally, breaks in which, if there is a
primary carer, they need to go somewhere else
from that house for a few days.
There needs to be some arrangement, that they
have another place to be at, something of
a break from that situation.
And if the families don't realize this, the
carer themselves should try to bring this in
front of the family, directly or indirectly, through
some communication channel, towards somebody reasonable in the
family, that they should try to make them
realize this.
Let's not try to be stronger than we
actually are, and not speaking up for something
which is a basic right.
Asking for a break, asking for rotation of
responsibilities, asking for sharing the burden, this is
your basic right.
Just like you wouldn't hesitate to ask for
food, you wouldn't hesitate to ask for a
place to sleep in your own house, you
should not hesitate to ask for this burden
to be shared as well.
Okay.
So this is point number one.
So this would be the physical dimension of
caring for the carers.
What else?
Okay.
So even if you don't have this responsibility,
or you are not at home, or you
are busy, at least this responsibility should not
be placed on them, that they should be
forced to take this responsibility.
And in all this effort, they should not
injure themselves, and even the person they are
caring for, they should not put them in
danger.
Absolutely right.
Absolutely right.
Okay.
So we have that physical dimension covered.
Beyond this, the psychological toll that it takes,
how do we advise for them to manage
that?
The single carer, the primary carer, or the
multiple carers?
We can think of the psychological toll in
two ways.
Many times, the person who is being cared
for, that carer is not directly linked to
that person, but he is doing it out
of compulsion.
We get very clear examples of this, in
many homes, the daughters-in-law who are
caring for their parents-in-law.
So in that, many times, even if they
say from the top, that no, we want
to do it, but we see that deep
down, this is a psychological burden for them,
that we have been made responsible to care
for them.
So these are the people.
In their case, the psychological distress will be
different.
It will be more like frustration.
And it will be more like, because of
this, my own children or my own home
is affected.
So in this too, the principle should be
the same.
Respectfully, and avoiding conflict, the rest of the
family members should also be included in this.
And for that, like you said, whoever is
reasonable in the family, should talk to them.
But we do understand that many times, especially
when you are in-laws, it is not
possible.
So maybe, maybe, I am not talking about
any particular situation.
Maybe, the husbands, whose parents you are caring
for, talk to them and ask them, to
talk to everyone else.
Because of this, the children at home, the
environment at home, or the daughter-in-law,
what effect it has on her health, that
is increasing.
And I have no hesitation in saying that,
the way they emotionally blackmailed you, religiously blackmailed
you, that after all, your mother is also
there, in the same way, you should also
blackmail them back, that as much as my
mother is there, yours is also there.
And there is nothing wrong in saying this.
There is nothing wrong in saying this.
And the consequences, right?
If a person is being blackmailed so much,
and his frustrations are not being felt, it's
not just that person that is suffering.
Everything that, by extension, is a role or
responsibility, or a relationship of that person.
For example, as he shared here, that children,
the frustration gets taken out on them.
And we know for a fact, that if
there is an untreated, unaddressed, depressive illness in
the mother, then we are setting the children
up, for developing depression, anxiety, and personality disorders
in their lives, as they grow older.
So the husband, or the extended family, is
not doing their own children any favors, but
they are setting them up, to suffer from
very serious psychological problems, if they are not
taking care of their mother's mental health, which
is as important, as the physical health of
the person, that she is taking care of.
And doing such things, that your patience is
over, you should be thankful, this is unreal.
This person is doing such things, that he
is fulfilling this responsibility, which he is not
fulfilling.
How are they looking to, to compensate, or
to make, you know, spew out these allegations,
and this emotional and spiritual blackmail?
So, as we said earlier, this is a
case, in which someone is forced to do
that.
in this case, the psychological reaction, will be
more of a frustration one.
But, the other case, is when, the carer,
voluntarily, is doing this, considering it his responsibility.
When, there is a, a sick person, in
our family, a father, a mother, a father,
a sister, a brother, a son, a daughter,
or, when, someone is, doing that.
what are the options, for that person?
And, the psychological burden, on that person, there
is frustration, there is depression, there is, so,
what should that person do?
Absolutely right.
I think it's very important, for them, to
come to terms, with, the specific illness.
It is important, that they, about that particular,
physical illness, as much as, an attendant or
carer, should know, they need to go out
of their way, to get that information, and
that information.
They need to have, a physician, whatever their,
whatever their patient is, their doctor is with
them, they need to understand, everything that, they
possibly can understand.
So that, all the problems, by appropriate medication,
treatment, environmental, control, can be mitigated.
All the problems, can be reduced, to a
minimum.
Whatever is manageable, any unnecessary burden, by missing,
medications, by not giving, the appropriate medications, by
not taking care of, simple pain, that would
be very common, right, or, the precautionary measures,
can be taken, that no one gets lost,
no one gets hurt, all of what, is
necessary, how to change the environment, how to
organize, their rooms, their physical activities, how to,
maneuver, all of those things, they should be
very well aware, they should be, they should
accept, that if this is a role, that
we've taken on, we need to do it
well, and for that reason, we need to
know everything, that there is to know, about
managing them, in the best way possible, so
that, we don't have, any extra burden, by
something that, we may have, missed out on,
on one level, this information, on the other
level, understanding, suffering in general, that we have,
preconceived notions, about life, about life, with respect
to, what life owes us, where we should
be, in life, how happy, successful, and you
know, all our dreams, when they have become,
absolute goals, to come to terms, with this,
dimension of life, in which difficulty, suffering, pain,
illness, is a real possibility, or, this conception,
using our, cultural, spiritual, religious, intellectual, resources, while
using them, about suffering, a, holistic, comprehensive, outlook,
developing, our attitude, about our behavior, that, that
conception, develop it, take it in that direction,
and try to go, where, we are able
to identify, the situation, as meaningful, that we
can reach, this level, this understanding, that okay,
to earn a lot of money, to get
degrees, to gain popularity, the understandable, landmarks, or
measures of success, that in its place, this
work, or this effort, or this service, it
is no less, meaningful, and that, what we
are gaining, as human beings, in terms of
our personality, and in terms of our spirituality,
by extending this service, is no less, and
perhaps, on a lot of counts, much more
worthy, than, a lot of other, achievements, that
may have been, achieved or gotten, had you
not, taken this responsibility up, right, so, and
of course, it is easy for me to
say, it is easy to put that thing
in front, but, for the people, who are
actually, in this, situation, it's a process, it's
a journey, that they have to, be willing
to take up, to develop that attitude, to
develop that conception, the misconceptions, our notions, the
naive notions, about reality, about life, to address
them, to redress them, and, to be able
to see these as, opportunities of growth, in
a very different way, to develop those conceptions.
So, Yusuf, so, that, does not sound like,
that this is a very easy thing, that
we just, sit and think, and with that,
and we come to, acceptance, isn't it?
Absolutely, which is why I said, that you
have your, cultural resources, your religious, spiritual resources,
your intellectual resources, you would have to, you
would have to tap them, you would have
to, really make full use of them, that
all those resources, will help you understand, this
type of situation, in a better way, and
with that situation, better, in a better way,
to negotiate, how they guide, how they help,
who are the people, that you can, seek
help from, I think that's something, that the
carers, should not hesitate to do, that all
these resources, yes, Are you implying, that after
using these resources, you will get a mental
peace, and the suffering, and the frustration, will
end?
I mean, these resources are no, these resources
are no panacea, these resources are no panacea,
it's not that, the way to employ these
resources, is that, you know, you open a
book, read it, finish it, and that's it,
or you meet someone, talk to them, and
life changes, and I was able to see,
that, you know, how enriching this experience is,
it's going to be a struggle, it is
going to be a struggle, it is going
to be a continuous process, that's why I
said, there are multiple resources, and they have
multiple dimensions, whatever opportunity you get, whatever is
available to you, you should not hesitate to
utilize it, and, you need to, delve into
those resources, to develop that, that positive, positive
coping attitude, I would say, this is a
very important step, whoever is available to you,
to help you develop that, one thing that
I have advised, a lot of the people
that I work with, who have to take
care of chronically unwell people, that, in your
own family, for example, if it is a
daughter, who is having to take care of
her father, in a particular, after an illness,
after a stroke, or dementia, whatever, then there
are other siblings, who are also sharing that
burden, they are also taking care of, their
father's health, their father's physical condition as such,
the family should get together, to talk about,
their own mental health as well, if a
sister, tells another sister, that when I got
this news, that this happened to our father,
or this happened to our mother, how difficult
it was for me, how I was able
to make my peace with it, come to
terms with it, fulfill my responsibilities towards them,
then that is the closest, possible inspiration you
can get, and then, if there are 4
-5 siblings, 2-3 siblings, then they, they
share, they become their own support group, and
that's how an ideal family should be, and
every, each individual feels comfortable, in expressing, their,
where they're coming from emotionally, their journey through,
finding out about the diagnosis, and then traveling,
the journey of taking care of their, unwell
relative, that will become something of a support
group, within the family, and then additionally, support
groups exist, for things like these, outside of
the family as well, other people who have
similar circumstances, to share with them, to learn
from their experiences, that would be validating, as
well as, you will get a lot of
inspiration from there as well.
So, Yousuf, questions?
Okay.
Yes, I think, a few other things that
are important, coming to terms with the diagnosis,
coming to terms with, you know, the suffering
in general, and, finding support, emotional support, for
people going through a similar situation, within your
family, or outside of your family.
These are a few steps.
Other than that, when we say that, you
are rotating your responsibilities, give yourself time, give
yourself breaks, give yourself, adequate chance, for your,
physical, requirements, diet, exercise, sleep, for your spiritual
requirements, prayer, meditation, whatever practices, you want to
engage in, your intellectual, requirements, reading, however, it
is, that you feel, that you're growing, or
that's your area of interest, independent of that
person, try to, the rest of your life,
whatever, time that you get, there, gradually, something
positive, or healthy is going on, entertainment, that
would, allow for you to disconnect, disengage, and,
you know, relax, provide you that relaxation, that
you need, so, finding the opportunity, for that,
and if, despite all of these measures, on
your own, you feel, that it's not working,
never hesitate, to seek professional help, when you
have to, and, for some people, the severity
of the symptoms, may warrant, that medications, medications,
might help them cope better, okay, moving to
questions, as yes, do you have any particular
ones, that you saw, that, we haven't addressed
so far, the
last question, this one, yes, from boring, as
opposed to the more interesting one, about what
you just said if there is a sick
mother or sick environment due to which the
children grow up to be highly anxious and
depressed and no one acknowledges that and those
children tell themselves that this is normal because
well no one says it's abnormal.
What can possibly these grown-ups going through
different disorders do?
So if I understood the question correctly that
people who have grown up in such toxic
households or unhealthy households and now they have
grown up and now what should they do?
Yes?
So it will depend upon what is the
disorder and what is the severity and at
what stage it is.
But generally speaking they are more likely to
develop anxiety, depression or personality disorders.
They can go towards psychosis of course but
generally speaking if
I can use the term with the baggage
you are having.
In any therapeutic process the first step will
be the same and then I cannot tell
generally what we will do because every problem
or every disorder that would take a very
different shape.
Fair.
One thing that I will emphasize on that
as much as we are highlighting and as
psychiatry psychologists we continue to highlight that in
childhood in this kind of environment, teenage growing
up, abuse, toxic situations, how they influence your
long-term mental health.
We always remember that they influence and they
lead to very serious concerns and problems but
they are not the only factors.
They are important influencing factors.
Yes but they don't take away the entirety
of the freedom of the individual we are
talking about.
My past, my childhood experiences cannot become an
excuse for my irresponsible behavior throughout my life.
It may be more difficult for me to
act responsibly on account of those experiences but
never impossible and that freedom that I have
within my personality coming to terms with that
freedom.
Coming to terms with the baggage or coming
to terms with freedom.
When you're coming to terms with these two
poles you negotiate as to how to proceed
and if help is needed in catalyzing this
process or facilitating this process then we go
for that help.
I did give a talk on it was
an online talk for LUM students I think
a couple of weeks back on growing up
in toxic households.
You will find the clips somewhere.
So there's a little more detail on that
there perhaps.
As we wrap it up I think most
of the other questions that came in some
way we did try to address them in
our main session hopefully that was beneficial.
Do you ever heal yourself without professional help?
Yes Raza most of the time we do.
We should be able to.
Most of the time we do and we
are healed by our friends jokes.
We are healed by our friends jokes.
We are healed by our families.
So most of the time we do heal.
It's very rare that we need professional help
and by rare I mean that in your
70 years of life it's very rare.
Majority of the times we do not need
professional help and we are not broken always.
We get traumatized and we get healed.
There are therapeutic resources in our daily routines
and our immediate environments more than we are
typically willing to recognize or you know usually
that we advocate.
So to fully highlight them.
In fact a good therapeutic encounter and a
good professional therapeutic relationship will be that which
will help you to see the therapeutic resources
in your routine and immediate environment and to
adequately utilize them.
If that's where the problem is.
But whenever you're not able to you know
where to go.
Okay.
All right.
Thank you so much people.
That's not therapeutic but that's them coming to
terms with their baggage apparently.
Maybe something like charming Raza.
All right people.
Let's all wrap this up.
Thank you so much for your questions.
Please keep them pouring in.
We hope we were able to offer some
sort of help for in raising awareness about
this topic mostly.
And that's what we will continue to do.