Philadelphia Medicine Winter 2017-18x - 20

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Feature continued
Mom's medical care has changed as well. We switched physicians
after the dreaded voicemail and were lucky enough to find a competent,
kind, loving geriatrician in Philadelphia who we now consider part
of Mom's care team. Her physician has been our guide as a family.
She meets with Mom for about 10 minutes to check her weight
and address any physical complaints and then she meets with our
family for the rest of the visit in a different room. We bring up the
things that we don't want to talk about in front of Mom. We talk
about bathroom habits, Mom accusing staff of stealing her things
and what she anticipates will be our next steps.
Our geriatrician has encouraged us to see this as a long process,
and told us not to come to every appointment, to call when we have
questions, to seek support groups and do what we can do, without
always feeling guilty that we should be doing more. She is also using
the language of illness, saying that Mom is "sick" which is such a
welcome contrast to well meaning friends and family saying that
Mom has a "little trouble with her memory." It helps me to wrap
my head around the massive emotional and financial toll this takes
on our family and the idea that this is not Mom's fault. She can't
try harder to remember, or just write stuff down. She has a massive,

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LECTURES AND EVENTS
feb 13: Pandora's Lab Book Talk Event
with author Dr. Paul A. Offit

concerts at the college presents
jan 29: Serafin String Quartet
feb 26: Philadelphia Orchestra Musicians
mar 26: Dolce Suono Ensemble
apr 11: Philadelphia Orchestra Musicians
may 21: Jordan Dodson

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20 Philadelphia Medicine : Winter 2018

terrible disease that is stealing her slowly from her life and daily she
loses track of something really important, some detail that made
her who she is/was.
The ongoing loss I feel is in communication with my Mom. I
miss her when I'm sitting next to her. My Mom's strength was in
how she listened and was able to piece out my worries through all
of my talking. She laughed at Dad's jokes, she sent cards and notes
at just the right times. Mom stopped understanding how to use her
phone, limiting the ways that we are able to reach her. At first she
just didn't know how to use her new cell phone, then she became
unable to dial but could still answer, and now she can't figure out
quite how to stop that ringing noise. She doesn't type emails like she
used to, or hand write letters for birthdays, or know what month it
is, let alone that it's her anniversary.
It hasn't been that long for our family. I still remember how Mom
would go to the store and buy something special for all of us, even
as adults. Something unique and different that she picked up from
pieces of conversation and held in her mind to surprise us. I know
that love is still there, but at times it's so hard to see through the
mind-numbing pain of her not remembering my husband's name,
not recognizing me on the phone, and not knowing my children
at all. They are young still, and don't notice that grandma doesn't
call them by name, or that she keeps calling my son a sweet girl.
But they are growing, and their grandma is very sick. And there is
no cure, no medicine to keep this illness from pulling Mom farther
away from all of us.
We are forced to not put weight into our conversations and instead
look at the other ways Mom is communicating with us. She lights
up when we come to visit. She looks relieved when her caretaker
arrives. When she is panicked and nervous, sometimes I am able
to reassure her and soothe some of that worry. The other day she
painted toilet paper rolls green and gave them to my son. It was a
really weird gift, and I found myself embarrassed by it. But my son
loved it and promptly started rolling his cars through them. So we
continue hoping for a medical breakthrough while looking for the
ways that Mom is still there, showing
us she loves us. *
Patti Cruz, MSW, LSW, is a social
worker and writer, who thinks
she is just as funny as her Dad
was. You can follow her @tryingforjoy and read her blog at
www.tryingforjoy.com.
https://philamedsoc.org/ http://www.collegeofphysicians.org http://www.tryingforjoy.com
Table of Contents for the Digital Edition of Philadelphia Medicine Winter 2017-18x
