“You don’t look like you have Alzheimer’s disease”

CynthiaA few weeks ago, I developed a cough. I went to the doctor, they checked everything out and sent me home. But I wasn’t getting better. I started to worry when the cough got really bad and I was having a hard time breathing.

I called my son, who told me if it didn’t get better, to go to the emergency room. By three in the afternoon, I was still having trouble breathing, so I took a cab from my home in a retirement community to the emergency room.

As with most emergency rooms, the waiting room was pretty full. I checked in, waited my turn and was finally called in.

My first stop was a little room where I talked to someone who got all of my billing and insurance information squared away. She asked me if there was anything she should know about my health history.

“Yes,” I said. “I have Alzheimer’s disease, so you might have to explain things more than once and go slow. And if something is really wrong, you will need to call my son to explain everything.”

She responded with, “You sure don’t look like you have Alzheimer’s!”

My next stop was intake, where I encountered the same question – is there anything the nurse should know?

I went through my spiel again, letting her know that I have Alzheimer’s disease and may need to hear things more than once and to call my son if there was a very serious or complicated issue. “I can’t believe it. You just don’t look like you have Alzheimer’s!”

Then, the doctor came in. He, too, asked if there was anything he should know about my health history. I told him about my Alzheimer’s and explained that even though I had been a nurse for many years, sometimes I just don’t understand. He said, “You gotta be kidding me! You don’t look like you have Alzheimer’s!”

This conversation was repeated three more times that day – with the respiratory therapist, another nurse and an x-ray technician. Needless to say, having six different health care professionals tell me that I don’t look like I have Alzheimer’s disease was surprising and a bit troubling.

What exactly does someone with Alzheimer’s “look like?” What should I look like? Should I be unresponsive to my surroundings and bed-bound in a nursing home? Should I be incoherent and confused about where I am?

Understand that I was treated with the utmost respect and kindness by everyone in the emergency room, both before and after I told them I had Alzheimer’s disease. They even took an extra step to show me to my taxi back home so I didn’t get lost along the way. My experience was a positive one – but it is a telling example of how deep stigma runs with this disease.

The fact that even health professionals – who should know more about this disease process than the average person – were surprised by seeing someone with Alzheimer’s who is vibrant, energetic and articulate speaks volumes.

I hope medical professionals in all departments, at all levels make an effort to better understand what Alzheimer’s disease “looks like.” And I hope that people in the early stages of Alzheimer’s share their diagnosis with more people. This disease may be fatal, but it doesn’t start with bed bound patients and utter confusion. It starts with people like me, who have a face, name, opinion and fulfilling life.

During my visit to the emergency room, I had a meaningful conversation with the x-ray technician, who was one of the people who told me I didn’t look like I had Alzheimer’s. Whenever I speak in public or speak as an advocate for Alzheimer’s awareness and the Alzheimer’s Association, I ask people to remember me. But before I could even ask, she said, “I will always remember you. When I am feeling down, I will think of you and of today and I know it will help me.”

It made my day to know I could positively influence someone’s life – and it keeps me motivated to advocate and share my story so we can end the stigma associated with this terrible disease.

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11 Responses

  1. Linda McFeely says:

    Cynthia is an inspiration to us all. She tackles the stigma of this disease with patience and grace. It is unfortunate that this occured at a medical facility. We all have so much more to do in the fight to stop this disease, and awareness is right at the top of the list. Thank you for sharing your story so I can use it as a tool and share with others.

  2. TerryBerry says:

    Great story Cynthia…. and your are simply vibrant!

  3. I worked with Cynthia for many years and still enjoy communicating with her . Her Intelegence , humor, and compassion are still intact and in a health enviroment we always see the last stages of Alzheimers . I guess I can see both sides of her experience and appreciate it for a compliment and not an insult as I’m sure she surprised and showed a good side of Alzheimers if there is one . The more people are interactive with thes good looking , facinating , and lovable people like Cynthia the less the stigma will be . You go GUZ, love and Prayers, Sharon.

  4. Jim Dillett says:

    Thank you for putting a face on Alzheimer’s disease. From my perspective that horrible disease needs to be better known and you are certainly doing that. Please continue your efforts and I wish you well. I will also remember you in my prayers.

    Jim Dillett

  5. Mimi Steffen says:

    Yes, this is typical for most people, even the medical profession.

    Once I found a stopper. A friend was trying to sympathize with me with that stock: We all forget names sometimes.

    Knowing she was a fairly new grandma, I looked at her and said, ” And do you forget your grandson’s name?” The shock that registered on her face was all I needed to make my day.

    The more of us that are willing to get tested at an early stage and then go public, the better educated the world will be.

  6. Lori says:

    Thank you for this piece. My mother is in end stage Alzheimer’s but when she was first diagnosed many years ago, it surprised me how many medical professionals do not understand this disease and its stages. They would speak only to me and ignore her during exams-even though as you say, she was capable of understanding as long as things were explained clearly and slowly. They meant well, but so many do not have first hand experience with the disease and, maybe more importantly, many do not have the time to really sit and listen to a patient.

    Anything we all can do to help educate will go a long way. You have a tremendous attitude and spirit. Thanks again!

  7. Tommy Dunne says:

    As a person living with demementi(Alz) i concur with everything Cynthia said what she left out is that when you have dementia you gain a supper power the power to become invisible in a full room
    everyone talks over you, around you, about you but never to you
    so once you say the magic words
    I’ve got dementia
    You disappear!

  8. becky hayes says:

    My 34 year old daughter Sarah has Down Syndrome and 3 years ago was diagnosed with early onset Alzheimers disease. I can’t believe that this has to happen to her. She also has Renal insufficieny due to a problem with her parathyroid gland. I’m not complaining for myself. I just am going to hare to see her go thru what I know is coming.She also had 2 open heart surgeries before she was 2.dhe has excellent doctors and receives the best care I can provide. I was only 24 when she was born and worked as a nurse until my dr retired me after a bout with breast cancer and several spinal issues. Any incites you vould give to me would be greatly appreciated. Thank yoi.

  9. Katie says:

    I run into the same problem with my bipolar disorder. Apparently I don’t look like I have bipolar or sometimes I’m told I do “too well” to have bipolar. Invisible illnesses like these are sometimes really hard to explain to people :-\ even health professionals

  1. March 21, 2014

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