Philadelphia Medicine Winter 2017-18x - 19

p h i l a m e d s o c  .o rg

We Try to Care for Her as the Disease Robs
a Very Bright and Loving Person of What
We Loved So Much About Her
By: Patti Cruz, MSW, LSW

I

n 2014, my Mom was given a formal diagnosis of "dementia,
Alzheimer's type" three months after my father died of an aggressive blood cancer called Multiple Myeloma. The day of Mom's
diagnosis wasn't the first time we had talked about dementia in my
family. My siblings and I tried to talk to Mom and Dad directly
about Mom's memory loss a few months before Dad passed away.
We thought direct communication was the best approach. We cited
specific examples of Mom forgetting, thinking that they would both
realize it and we would be on the fast track toward getting her help.
Instead, my father brushed it off, scolding us and telling us to "give
Mom a break, she is going through a lot." Mom was furious and
defensive, seeing us as attacking her for not being strong enough.

exams. It was the first time I saw Mom complete the mental status
exam and it was heartbreaking.
Broken out of normal conversation, Mom couldn't cover the
depths of her confusion. In casual conversations she could dance
around the word she had forgotten, distracting you by telling a
different story, or laughing or asking a question. I wanted to give
her hints during this exam, to fill in the holes in the conversation,
but instead I sat there quietly, so that her physician could see what
we had been seeing. A week later my sister got a voicemail from the
neurologist letting us know that Mom had Alzheimer's and there
was "not much to do about it." As terrible as receiving this news on
a voicemail was, this physician was sadly right; as far as a cure goes,
there isn't "much to do about it."

A month after my Dad died I traveled back to my parents' home.
The house smelled of rotting food and two neighbors stopped me
So much has changed since those early days of diagnosis, when
to tell me stories of my Mom getting lost. Mom looked like a mess.
our
fears were confirmed. A few weeks later we moved her five hours
The time for communicating feelings and gently suggesting she get
help was over and my siblings and I had to go against my Mom's away from where she had spent the last 38 years, so that she could
wishes and force her to go to her primary care doctor. We are all be closer to my siblings and me. As parents of very young children
in our thirties with our own families, but going against our Mom's ourselves, we couldn't make the weekly drive back to her home to
wishes felt like we were traitors. We had been raised to respect our provide the kind of support she needed. We sold the home, gave
parents and calling her doctor behind her back felt like a violation her car away and had a quick estate sale. We packed up all of her
of that. My siblings and I made an appointment for Mom anyway. I belongings in one evening and hired movers to arrive the next day.
called the doctor in advance of the appointment to let him know our They packed cups, plates and memories away and drove down the
concerns before he met with Mom. The doctor was not concerned, driveway carting them off to her new life.
and said that given the stress Mom was under as a caretaker for my
Mom started her new life living independently in an apartment
Dad, it was likely anxiety, complicated by grief.
in a large facility with different levels of care. That first year, staff
At the visit with the primary care doctor, he asked Mom a few and residents of her building began talking to us about how Mom
general questions and even though he had to prompt her for some seemed confused sometimes so we hired an aide to be with her two
of the answers, he turned to me and said: "As I said on the phone, hours each day. Mom seemed very relieved to have someone she
she is grieving. She certainly doesn't have Alzheimer's." I left the considered to be her friend with her, helping her out. Last year she
office defeated, confused and exhausted. I felt like our one chance scored an eight out of 30 on the mental state exam, earning her a
to convince Mom to go to the doctor was wasted on this visit. My label of "severe dementia." She now has 12 hours of nursing a day
siblings and I hatched a plan to talk Mom into going to a neurologist and they no longer repeat this exam, as she is unable to complete
who specialized in dementia. He did brain scans and mental status it. When we look back, Mom's decline has felt so fast and yet often
feels like it is in slow motion.
Continued on page 20

Winter 2018 : Philadelphia Medicine 19


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