Translator: Mike Longley Reviewer: Denise RQ
Every day, millions of Americans in the US
give unpaid care to a loved one or spouse
living with a serious medical illness.
Every day.
Over 35 million right now are giving care to patients,
people in the family, of all kinds of conditions.
In 2015 alone, the new 300,000 women
who will be diagnosed with breast cancer
will have new caregivers.
And these numbers don't even touch the millions and millions
of unpaid caregivers from families around the world.
This talk today is about the caregiver's journey;
the caregiver's journey.
Right now, medical care in the United States and most countries
is squarely focused on the index patient, as it should be.
This is about the spouse caregiver's journey.
Do you know there are four ways that the illness in a patient's body
literally jumps into the spouse or the family, based on research?
The first way is that the spouse caregiver
is massively affected
by depressed mood and anxiety.
25 to 35% of spouse caregivers literally become
clinically depressed or anxious,
and that has nothing to do with whether the illness is lifesaving or curative.
It happens with early diagnosis and early possible cure.
The second way that disease bounces into that spouse caregiver's life
is that it challenges his or her assumptive world.
All the givens, all the things they planned on,
all the ways as a couple they thought, are up for grabs.
And for some spouse caregivers,
their entire assumptive world is shattered.
Third, this illness jumps
into the spouse caregiver's world
because he or she doesn't know how to act.
The old ways of being a partner don't work.
They're not helping.
They don't know how to say, or talk, or do.
And you know, it happens in happy marriages.
It happens in well-adjusted marriages.
It happens in relationships full of integrity, and strength, and love.
The fourth way it jumps is it negatively affects
the spouse caregiver and the patient's relationship.
That was a major discovery we made 25 years ago.
So instead of the illness just thinking of it
as being something like a broken leg, the illness becomes much bigger.
And instead of it being something we can handle, and we'll fix the leg,
the marriage - not divorce - the marital tension escalates.
And that happens in all marriages.
This is not pathology.
This isn't bad things.
This is the natural history of what happens in a household
when there is serious medical illness.
This talk is about the caregiver's journey.
And one of the parts of this is to tell you
there are myths about caregiving that we have to give away.
We need a new mythology for caregiving.
So I'm going to give you three myths, each of which is based
on many years of old history, and the new truth, based on research fact.
Myth one is that feelings
are easily contained in an individual.
They are not contagious.
That's wrong; that's not based on fact.
The real fact is, in a relationship with serious illness,
the caregiver and the patient have feelings that feed into each other,
and if the patient is sad or bad, - sad feelings, anxious -
that's going to cause that sadness, that cloud,
the darkness to be felt by the caregiver.
Second myth,
""All you need is a happy marriage. That'll get you through the illness."
How I wish that were true.
Actually, a happy marriage,
a well-adjusted marriage, or relationship,
- and this is same-gender or opposite-gendered partners;
it doesn't matter, based on the science -
those relationships are buoyed by a history of a positive relationship,
but you need more than a happy marriage to get through a serious medical illness.
When we turn now to what needs to be changed as the mythology,
what do we need to do to get through that mythology?
There's one more mythology - I'm trying to think -
one more myth that I'm thinking, based on science,
so let me just take a pause to think this.
Yes! Among the most important myths,
"The spouse must swallow their feelings and forget about themselves."
That is a myth, but it's dominant.
That's why we're talking about a new paradigm about caregivers right now.
The evidence is that swallowing
cause the stress of caregiving to get worse.
And now we have studies that show that the spouse caregiver who swallows
have elevated stress hormones.
We're not stopping there.
They have altered disregulation of their biological pathways,
which are their protective ways of their natural immunity.
So if this is what's happening, and the facts are what I've given you,
the next question is: how do you step forward as a caregiver,
- me, you - how do we step forward to thrive and not just survive?
I'm going to tell you two simple things based on studies.
And they are so simple I can imagine you saying, "Did she really say that?"
Yes, and I'll happily share the studies with you.
One - hang in there - take care of yourself.
Take care of yourself.
Now, I'm going to get into these deeper.
Two: add to your toolbox.
"Take care of yourself", what does that mean?
It's not about getting respite care.
It's not about hiring staff.
It's about taking 15 minutes every day
just for you.
It isn't about making a list of what you have to do.
It isn't about figuring out a problem you have to solve.
It's not about getting resources to come help clean the house.
You.
You treat yourself like company.
And don't get confused about self-care being selfish.
Second: add to your toolbox.
Add 15 minutes, that's all.
When you have that, you'll see, you'll want more of it.
If you taste it, you'll want more of it.
15 minutes is the dose to go for.
That is it, and you'll watch, you'll see the differences.
That creates a place for your peace and your joy.
It doesn't require things, it doesn't require music,
it doesn't require a budget.
It is that space you can create for yourself.
It might be shooting hoops, it might be calling up friends,
it might be having a cup of tea, quiet, it may be walking around the neighborhood.
It is your 15 minutes, and it's sacred.
It has to be protected.
The toolbox - the two things to add to your toolbox -
this is going to be so simple.
Be an attentive listener, a special kind of listener,
to the person with the serious illness.
This isn't about just, "Oh, yeah, listening."
This isn't about just, "Oh, yeah,I'm thinking.
I'm going to roll the tape of when she's talking or he's talking.
I'll figure out how to help them."
No, no, no, no.
This is about being tabula rasa.
This is about being a blank blackboard.
This is about being a love sponge, where you are fully present,
and you are listening to their sadness
even if you can't fix it, even if you can't change it.
And that is so hard for most of us.
We want to fix it; we want to be Superman; we want to be Superwoman.
And we're already thinking,
"Now if I could just help her understand it a different way."
No, that's a different part.
Attentive listener, because silent, attentive listening heals.
I'm talking about biological healing, as well as emotional healing.
Silent attentiveness heals.
The other tool to add:
learn and use open-ended questions.
"So simple," you think.
It's not; it is, but it's not.
Or you say, "Oh, I know how to talk to my spouse.
"I know how to talk to him; I know how to talk to her."
Hmm, maybe.
Open-ended questions is that extra part when they're not forthcoming,
when you think something is happening for them,
and you can't read it, you don't know it.
You want to knock on the door and check it in.
It's when they aren't forthcoming.
It's when you observe something,
and you're concerned about, "How is it for them?"
And so you ask, "I saw you quiet down
when Becky was here talking to you about your illness.
How are you right now with that?
"I hear you talking to Bob on the phone sometimes
that this is hard for you.
What is hard for you? I want to hear it."
Now, here's the amazing thing.
When I used to study this before, I thought,
"Oh, I'm going to be so pressured once all that information
gets in my shoulders and on my shoulders, and --
No.
When you're really being an attentive listener,
or asking open-ended questions to be a love sponge,
- my word; that's not scientific, although I'm a scientist -
(Laughter)
- but can you imagine? - just take that.
What happens is that by listening, you're helping heal.
It's so counter-intuitive.
By listening, you're helping heal both the patient with the illness and yourself,
because what starts to happen is the person with the illness
knows you are fully present and loving, and they feel it.
I've studied it by thousands of people.
They feel it, and you haven't done anything.
And they feel loved, and valued, and esteemed,
and you haven't done anything instrumental.
This is about a choice for you as a member of a family, a partner.
These two skills in your toolbox: being a special attentive listener
and asking open-ended questions to invite the full story
to help the healing are things that will work.
We just finished a multi-million dollar clinical trial
funded by the National Cancer Institutes.
We tested this on spouse caregivers of women
with stage 0 through 3 breast cancer,
and they were taught to do those two things:
self-care, 15 minutes or more a day,
be an attentive listener,
and ask open-ended questions to their spouse partner.
We've analyzed the results.
The men - in these cases it was all male, although we had same-sex partners
invited in, but they didn't come in and enroll -
the men significantly improved on their anxiety.
The spouse caregivers significantly improved on their depressed mood.
They significantly increased their competence and self skills,
and taking care of themselves, and knowing how to communicate with their wife.
And their wife's measures - separate, not the husband's - said,
"He loves me, he hears me, he talks to me differently.
He has these skills; they weren't there before."
And the most amazing thing:
spouse caregivers were also measured by blood and their saliva
to examine their biomarkers, pro- and anti-inflammatory biomarkers,
which are their protective mechanisms of their natural immunity
to help them ward off the bad things, the germs, the viruses.
And what did we find?
Spouse caregivers doing those three things significantly improved
and had more regulated anti- and pro-inflammatory pathways.
So their bodies changed,
and the intervention was only five sessions.
So the challenge for all of us, including me,
is how do we make the choice to thrive and not just survive
a serious medical illness when a family member has it?
It could be Alzheimer's, it could be end-stage renal disease, cardiac disease.
Your choice is how you decide for yourselves: how do you set this up
so your journey as a caregiver is one of healing and thriving?
Thank you so much.
(Applause)