A Diagnosis of Alzheimer’s Disease

Gwen Richards; Alzheimer’s Disease Advocate and Blog Contributor

Our first contributor, Gwen Richards, was diagnosed with Early Onset Alzheimer’s Disease in November 2008 at the age of 54. Since receiving her diagnosis Gwen has been an active and valued Alzheimer’s Disease advocate on both the local and national level.  She serves on the National Alzheimer’s Association Early Stage Advisory Group as well as the Missouri State Alzheimer’s Taskforce.  Gwen lives with her husband in Kansas City, MO and has two adult daughters that live outside the metro area.  Gwen and her daughters e-mail and/or talk on the phone every day.  By doing so, they each know everyone is okay.

Recently, Kelly Jones, LMSW, Heart of America Community Outreach Coordinator, sat down with Gwen at her home in Kansas City, MO.  During the visit, Gwen shared details of the moment she received the Early-Onset Alzheimer’s Disease diagnosis.  What follows are Gwen’s words as recorded by Kelly:

I first went to my regular medical doctor with my concerns. He basically thought I was in need of more rest or something of that nature. Knowing that was not the case and having watched my mother and oldest brothers’ struggle and demise with the disease and their ultimate untimely deaths, I decided to contact one of my other siblings that had been diagnosed with the disease and asked for her doctor’s contact information.   I then contacted him and made an appointment.  On the day of my appointment, I left work and met my husband at the doctor’s office. 

The doctor performed a mini exam where he flashed cards and asked me to memorize the images.  A few minutes later he asked me to recite the images that I previously saw on the cards.  I was unable to do so. According to the doctor, a person with my age and education should have performed much better on the test.

My husband and I were at the doctor’s appointment together.  I remember the doctor asking me one of the memory-test questions; I can’t recall what it was, but it was something real simple, something I should have been able to answer and I absolutely did not know the answer to.  At that point, I looked over to my husband and he had pulled his cap down over his face, like this.  (Gwen mimes pulling a baseball hat down low, covering her eyes and half her face with her hand.)  He understood right then that something was wrong and by the end of the visit, the doctor said “Alzheimer’s”.   That may have been the moment [my husband] got it, but for me, the only thing the doctor’s test did was confirm what I already knew.  

My mother had the disease and passed away.  My oldest brother had the disease and passed away.  So when Alzheimer’s disease came knocking on my door, I knew it was that monster.  I understood the early signs; I currently have two other family members living with disease.  They can be subtle and people don’t always see them or want to see it, but I knew.  One big thing I first noticed: I was bringing work home because the noise in the office distracted me from completing [tasks].  That wasn’t normal for me. 

On the day that I received my diagnosis, I remember I drove straight from the doctor’s office to work.  I sat in my car in the parking lot and I read the piece of paper from the doctor that said “Alzheimer’s”.  And that was it!  I went inside the building of the company where I had worked for 25 years and told my boss, I have Alzheimer’s Disease and today is my last day.  He was real good about it, real understanding.  He said, Gwen, you do what you have to do to take care of yourself.  He told me to go ahead and live and enjoy my life.  I gathered some of my personal belongings and told a couple of co-workers that I was leaving.  I miss work, but being home is better for me now.  I’m comfortable here; no one is going to ask me for anything.  It’s safe.

What was ahead was frightening, yet I knew enough to search out the Alzheimer’s Association just as I had when my mother was diagnosed.  I felt that unlike the doctors, they could help me find purpose during the unexpected transition in my life.

I do worry about my husband.   That’s what bothers me the most, how [Alzheimer’s] affects my family:  my husband, my daughters, my grandchildren that I may never know.   My daughters will have to go through what [my siblings] and I went through with Mama.  I worry about my daughters and grandchildren getting Alzheimer’s. 

I’m a person who struggles with Alzheimer’s disease every day.

How do you cope with the stress associated with disease? 

Well, I attend an early stage support group at the Alzheimer’s Association and the people in that group, we support one another.  Even outside of group sometimes; we’ll e-mail and check in on one another.  And I write [about it] when I can.  I’m a writer, like my daughter.  We both love to write.   Both girls and I e-mail almost every day, but we don’t talk about Alzheimer’s all the time- just communicating with them helps.   I have on-line friends that also have Alzheimer’s disease.  One of my online friends and I check on each other daily; we chat about our lives and how we’re coping.  It helps and we understand each other even though we have never met and maybe never will.

What advice would you give a person who is experiencing early signs of memory loss?

Consult a doctor and make sure they listen to your concerns.

If the doctor dismisses your concerns, find another one; don’t waste your time.

Seek out the local Alzheimer’s Association chapter.  They’ll provide directions and all the tools necessary to cope.   I saw two doctors before I found one that believed me.   In my case, I didn’t look and behave like the stereotype of a person with dementia so it was challenging getting a diagnosis.  It’s important to connect with someone that will believe you.   The other thing I would add, if you find out [you’re memory loss is dementia], it’s good to have a purpose as life changes.   For me, I work at raising awareness, raising advocacy, but that can be frustrating at times.  I want to be able to do more.

 

THE MONSTER

 

By Gwen Richards

 

A monster came to visit me

I can’t remember when

He barged right in and didn’t ask

As if he were my friend.

 

He resides somewhere within my brain

And scatters things around

When I go to retrieve my thoughts

They are nowhere to be found.

 

Memories of yesterday

Some scattered to and fro

Where are my thoughts from yesterday?

Oh God, I do not know!

 

The monster sprinkles bits of fear

Where fear did not reside

He makes me sometimes feel ashamed

He makes me want to hide.

 

In my home where I am safe

And sheltered from the world

Surrounded by familiar things

Protected and secure

 

No one to care or even know

What lurks within my brain

Yeah, a monster lives within me

My mind he’s trying to claim.

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