“It’s a Puh.. Puh… Puh… word.”
I desperately explained to my husband. He turned his
head away from me and walked into the other room. I
stood there alone, bereft, defeated, feeling the
tears burn through my embarrassment and frustration.
It wasn’t the first time. This
had become more and more prevalent in our lives.
Being unable to communicate was common lately; a
turn in my life that was unexpected and completely
foreign. It changed everything. And it was getting
worse. I was so frightened I was becoming paralyzed,
isolated, and ashamed.
The last few years of my life
had been full of exciting life altering events -
some better than others. There were highlights and
low times. For five years, after having had a long
career as a healthcare administrator, I had been
operating my own business as a geriatric care
manager. As with any new business it would take time
to grow, which gave me the opportunity to write a
book for a healthcare publisher, develop a national
speaking career and teach online. I was doing only
the things that I loved. I was living everyone’s
dream.
In October, three years into
this new life, I was told I had breast cancer. I
froze. My adored husband stood by me every step of
the way and warmed me so I could approach this as I
had everything else in my life; proactively. He
rubbed my feet as I was prepared to have the cancer
cut from my body. I was prescribed an antidepressant
and tamoxifen, the drug commonly given to breast
cancer patients. My children and grandson came from
both coasts to visit that holiday season. The days
were full of business and overseeing the building of
our new home in the mountains, a longtime dream of
mine. I didn’t miss a day of radiation after the
surgery. I was cancer free and went on with life, a
bit giddy even.
But as I looked back at some
things that had happened through the 6 weeks of
radiation I came to realize that I hadn’t been as
‘together’ as I thought during that time. I had
shown up for appointments a week early and missed
others completely. Probably normal for anyone going
through cancer treatment, I went through it like a
zombie.
I had always been a visionary
person, able to see an entire scenario or theory in
my mind. Over the next few months I ‘saw’ more than
usual, and had difficulty communicating my visions
to others. Sometimes I’d start a story in the middle
so others couldn’t follow me. As I held my breath
I’d search for a word or a phrase, then I’d sigh and
shake my head. I was embarrassing myself. So I
withdrew. I just decided not to talk as it wasn’t
worth the cognitive and emotional effort. I also
stopped pursuing presentations.
During this time, I heard about
a famous author whose work declined over the period
of her life. After an analysis of the words used
early in her writing and those used when she was
aged, the professionals surmised that she had
acquired Alzheimer’s Disease. Hearing this made me
aware that I had been struggling to write my weekly
columns and the live chat sessions with my online
students. I saw the pictures in my mind of what I
wanted to write, but it wouldn’t come out my fingers
at the keyboard. It felt like I was using baby words
and that I’d had a better vocabulary in high school
than now. I had always been thought of as articulate
and no longer was. I became more afraid.
As a nursing home and assisted
living administrator, I had seen many people in all
stages of Alzheimer’s, including those fighting the
early stages. I was wondering if it could be
possible that I had early onset Alzheimer’s. I knew
that nouns were the first words lost so I tried to
analyze and diagnose myself. I didn’t dare breathe a
word of my suspicions. I didn’t take my own advice
to families, which is to discover Alzheimer’s early
while medications can slow down the deterioration.
Certainly this wouldn’t happen to me, I reassured
myself. I chuckled at myself remembering that while
in college I was one of the many students who took
abnormal psychology 101 and thought I had every
diagnosis we studied. I calmed myself, sure that my
panicking was making all this worse. All I had to do
was forget about it and push through my fears and it
would go away. It didn’t.
I went to my regular medical
appointments and never said a word. I did ask the
doctor if the tamoxifen could cause weight gain as I
had heard. I was summarily dismissed with, “There’s
no evidence of that. You gain weight when you eat
too much.” I wasn’t going to ask any more questions.
And I wasn’t willing to consider stopping the
tamoxifen as I thought of it as my lifesaver.
Daily I was reminded that my
writing had been negatively impacted. I couldn’t
form a narrative paragraph without great difficulty.
I had ceased marketing my speaking engagements and
hadn’t given a presentation in months. I had become
a hermit, staying away from people due to my fear of
making a fool of myself. This fear of and loss of
words was affecting my friendships, my career, my
teaching, my writing, my self concept and ultimately
my income.
Now I stood in the dining room
and watched my husband turn from me, slightly
shaking his head as he walked into the living room.
He would never understand, so I can’t tell him how
scared I am. At least with the cancer, it was
tangible, and real; it could be seen and felt. This
was in my mind, untouchable, and even worse, I was
losing myself. I had seen so many adult children get
angry at their parent as if s/he was just trying to
get to them, to irritate them. I was afraid my
husband was feeling that way with me. I never did
find the ‘puh…’ word, went to the bathroom and
cried; more frightened than ever during the past
year that this had been evolving. I was now losing
my beloved, too.
A few days later, I was visiting
with a trusted nurse friend. I burst into tears and
for the first time voiced aloud my dread: “I have
had symptoms of Alzheimer’s for months.” I described
them succinctly. We brainstormed that perhaps it
could be side effects of some medications I was
taking. Myrna zealously looked in every nursing and
drug manual she had. She found nothing that could
explain my experience. But Myrna, the researcher,
scientist and devoted friend, didn’t give up. She
called a nurse who worked where she had access to an
informational, online service. Myrna described my
symptoms: inability or difficulty writing narrative
and word finding. After several anguishing minutes
the nurse called back. Bingo! The tamoxifen can
cause such symptoms, described almost exactly as I
had. This time I wept with relief.
Now I had my explanation. I was
loaded for a fight. That evening I confessed to my
husband what I had been going through and what my
plan was. He tried to understand but he had no
experience with such things. Since I had been so
easily sent away with my previous fears, I prepared
myself to stand up to my doctor and not back down.
There had to be another way to treat my cancer. I
could not accept living the way I had been.
Four long days later, I saw the
nurse practitioner instead of the oncologist when I
went in for my bi-annual visit. I told her
about my inability to find the proper word or write
narrative; and how these endangered my marriage, my
friendships, my self image and my career and income.
She immediately said that we could substitute
another medication. I was shocked that I didn’t have
to use my entire store of arguments. My reaction to
tamoxifen was uncommon, but documented. It was over.
Such a relief. In two weeks I was back to normal.
I had felt what it must be like
to experience the slow onset of Alzheimer’s and it
was the most awful thing you can imagine. Being
aware of losing your mind is extremely worse than
losing a body part. And I was laden with the
responsibility to tell others of my experience. What
would I tell them? First, if you know something
isn’t normal for you, it isn’t. Help is out there.
Go for it. Don’t wait. Ask for what you want. Demand
what you need.
What else would I tell them?
What I asked of my husband. When you see others
change, suffer, struggle, tell them that something
is different about them. Tell them, lovingly, that
their behavior is not like them. Don’t discount
them, push them away, blame them. Tell them you love
them and you want to see them get help and find out
what is wrong. It may well be the best gift of love
you will ever give.
Linda LaPointe, MRA, is a
Geriatric Care Manager and the author of the new
book, Home Sweet Home: Help Elders Age in Place. She
can be contacted at
www.homesweethomebook.com
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