Gary Barg:
I was just wondering, during this
process, who was there looking out
for Barry?
Barry Petersen:
Nobody. I was not just in denial, I
was delusional. When I saw the
statistics, when I realized that
caregivers tend to die before the
person with Alzheimer’s, I said to
myself, that makes perfect sense—an
87-year-old woman taking care of her
90-year-old husband, the physical
demands, the hours—but that is not
me. That is not early onset.
It really took our live-in caregiver
sitting me down and saying to me,”
You are going down.” This is a
woman who is a retired nurse, who is
taking my blood pressure, who is
monitoring how Jan is doing, who
could really see it. I had to
accept what she said because she
added something that haunts me to
this day. If I go down, if the
caregiver goes down, who takes care
of the person that you love who has
the disease? Her point was
very blunt. You take care of
yourself or no one takes care of
Jan. As she said, Jan will
always have people looking after
her, but the caregiver does not have
that. I think in point of
fact, caregivers deny getting help
sometimes. Let me go to
something else you said which I
think relates to this, and that is
you use the word guilt. I
think in my case, and I do not know
how shared this is, there is a lot
of guilt that you are not the one
with the disease.
Gary Barg: What
do you do about it?
Barry Petersen:
I talked to people who were good at
this; obviously, a therapist is good
at this. I asked for their
help. They explained this in
numerous ways; the most brilliant
was the guy in Beijing. I went
to him and said, “I am feeling
horribly guilty.” This is
after Jan is in assisted living in
the United States and I am still in
Asia. I am having a terrible
time getting the wherewithal to get
back on a plane and see her. I
said, “This is awful. I feel
awful about this.” He said,
“It is because every time you go
back and every time you see her
change, you start the process all
over again of grieving for what you
have lost. It is like going to
the same funeral over and over
again.” That still goes on
today. We were out there last
weekend to see Jan and yes, when
there are changes, when you see that
she has slipped away a little more,
it hurts. That old friend,
that old foe, guilt, comes back to
haunt you. So I do not think
it ever goes away. You ask
what do you do about it? I
guess what you do is you cope with
it. It is going to be there
and you deal with it as best you can
day-to-day.
Gary Barg:
That is why I like the idea of an
appropriately led support group.
Even though millions of people go
through caregiving, each and every
one of us thinks we are absolutely
alone.
Barry Petersen:
I think that is on my list of
cruelties of the disease. It
is so hard on the caregiver, and the
caregiver does not know because you
just do not realize it. So I think
that to be a caregiver in this
disease is dangerous, difficult, and
lonely; and, if you do not watch
out, suicidal. People do not
like to hear that, but I think that
is true.
Gary Barg: One
other challenging aspect we have as
the primary caregiver is, so many
times, you make a decision and all
of a sudden you start getting
terrible flack from people you
thought were on your side.
What can you recommend for
caregivers who are going through
this issue?
