Mar 112014
 

A 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 that if it didn’t get better, I should go to the emergency room. By three in the afternoon, I was still Cynthia_alz_bloghaving 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 the woman 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’ve 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 that 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 at all levels make an effort to better understand what Alzheimer’s disease “looks like.” 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.

 

About the blog authorCynthia Guzman is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG) and is actively involved with the Northern California and Northern Nevada Chapter of the Alzheimer’s Association. As an Advisor, Cynthia wants to do her part by spreading awareness about Alzheimer’s and reducing the stigma attached to the disease. Cynthia believes in early diagnosis and the importance of educating physicians on the best ways to support an individual throughout the diagnostic process. Cynthia lives in Napa, California. She has three children and three grandchildren.

This post originally appeared on www.alzheimersblog.org.

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  21 Responses to ““You Don’t Look Like You Have Alzheimer’s””

  1. I see progress every time I log on to the Alzheimer's Website. Please keep up the good works so many people are counting on you!

    • I, too have had lots of experience in dealing with Alzheimer's. My mother, my brother and my husband as well. It is , as far as I am concerned the most horrible disease in the whole world, not only the person, but for the caregivers as well. I just finished a wonderful book called "Still Alice". I recommend it highly to everyone. Even though I have been a caregiver forever (it seems like), I was not sure I wanted to read the book, I started it and to my surprise I could not put the book
      down. I highly recommend it to everyone.

      ALIE

      at the

  2. I am in an assisted living community with my wife of 67 years this June. I'm getting a little less able to remember some details and it takes me a little longer to gather my thoughts to properly discuss an issue. My wife is a little more inclined to forget little things and needs reminders as to the day it is etc.

    We both are in good health she's carried a pacemaker for the past 3 years or so to treat an irregular heartbeat. Her BMI is excellent and the only serious problem is COPD which tires her quite often. I am within my BMI and heart and lung are in excellent shape according to my last physical.

    There is a memory care unit here downstairs from our abode and those people are moving around and as Cindy points out, They don't "look like….." Our Geriatric Psychologist states that dementia and alzheimers are the same. I tend to agree with that assessment and we both do our utmost to stay active, exercise etc., however as we both continue down this road,
    we are cognizant of the growth of this (these) maladys and we agree we'll deal with those issues as we move on.

    My brother is in serious stage of dementia and in talking to him I could barely discern what he was saying and I had to tell him who was calling. I am intending to see him shortly as he lives in the central US. That visit will give me a better understanding of the issues he is facing and from my limited knowledge of the disease, I can only be there for him and will understand if he doesn't remember me very well or our past. We haven't seen each other for 5 years now and I am looking forward to it. I have seen cases here where a single visit to a hospital of a resident here is my last remembrance of them and I sincerely want to avoid that with my brother, God willing.

    Good post Cindy – Ignorance has a broad range doesn't it?

    • I am very young 48 and have cognitive impairment but not an Alzheimer's diagnosis…yet. I get this type of reaction all the time too. Sometimes I get more confused and have difficulty with speech (when my medication runs out) and people say to me – "you seem fine to me." I just want to tell them – well you don't see me under stress or after my medication wears off…or how my IQ has gone from 130 to in the 80s. You don't see me struggle at speech therapy to do simple math problems or clock reading skills. I really wish I was "just fine." Great post…wish everyone could read it…but at least health care workers should.

      • I am now 44, been seen by numerous neurologists, out patient at Duke University for a couple years, was officially diagnosed a couple years ago – and still, many emergency room admissions with the same response – you don't look like you have Alzheimer's, you are way too young to have it, and that was said to me and my family by the "top" neuro team there – well I guess the other 4 in N.C. didnt count as reputable – yes, its been a horrible experience, frustration, stress, hopelessness and depressed years – thankfully I have a wonderful family, my support system, but I agree with your last sentence – health care workers of all degrees need to be more aware, not look at us like we are stupid, lying, or ridiculous sounding .. obviously with the type of meds, the history, my symptoms you would think would be enough, unfortunately it never is. Still stumble, meet those who dont believe, they second guess because I have good days, so I dont look or sound like anything is wrong. I wish those good days were everyday.. but I understand completely what you are going through. Awareness, research and more media attention to early onset needs to be put out there much more than it is. Hope you have found a good neurologist like I have recently who understands and the support yourself and family needs.

  3. I have had almost exactly the same experience. About a year ago I was hospitalized for my third "cardio-vascular incident". While I was going through the admission procedure, I gave the intern a brief summary of my (extensive) medical history while they were searching the computer for my medical records. When I finished by saying "and I have been diagnosed with early stage Alzheimer's Disease." He started laughing. He was obviously completely unfamiliar with Alzheimer's Disease. I can only conjecture that either his medical education was remiss, or the hospital made a mistake when they hired him. My primary care physician is well aware of my condition and (even though, I go elsewhere for my Alzheimer's treatment), I'm pretty sure that it's noted on my medical history. I know that the next day, the staff was aware of my condition.

    • You know Allen there are so many who joke around saying "I think I am getting Alzheimer's." What they don't understand is that this disease is no joke. It's a terrible debilitating condition. Without ones memory, we are left foundering: Who are we? What are we? Where do we belong? And does anyone care about us?
      This is reminiscent of the days when people used the word "retard". However, every one is susceptible to Alzheimer's and as we all know the numbers are increasing at an alarming rate. I lost my aunt in the 1980's then my Mom in 1999 followed by my cousin and my sister in 2011.
      It's imperative that the schools begin sensitizing and teaching about this now. Especially since nobody is immune from this disease yet.

  4. Thank you for your excellent article about how people respond to us when we tell them we have Alzheimer’s Disease. I live in Marin County and I often get the same reaction when I tell people that do not know me well. Fortunately, friends and family are very supportive. I attend the Alzheimer’s Support Group in San Rafael and find it extremely supportive.

  5. My great aunt passed last Saturday from complications stemming from AD. Her sister has recently started displaying signs of AD and will be entering a local nursing home. My sister and I were just yesterday discussing how it can be difficult to determine whether or not someone has AD simply from looks alone. As health care professionals and having been around the nursing home setting for our entire lives (3rd generation nursing home employees), we have developed relationships with many AD residents and sincerely hope that organizations like this one can one day find a breakthrough on AD treatment.

  6. Kudos to you for speaking up and telling folks you have AD. My husband is 57 and was diagnosed with AD at 50. He certainly didn't look like he had AD either. He was so socially adept that he could talk to people for quite a while without them having any knowledge of his illness, and he was NOT going to tell anyone about it. Unfortunately, he couldn't get by at work with just great social habits. When my daughter and I first placed my husband in a nursing home, most visitors thought he was an employee. He would walk up to people, extend his hand and introduce himself. Sadly he has declined drastically in the last several months. He rarely speaks and cannot walk without assistance, but his smile still radiates when he sees his loved ones. Thank God for that! Keep on advocating!

  7. I think those of us either with alzheimers or their caregivers have a responsibility to tell others when appropriate. The disease will effect most people in one form or another now or in the future.
    We were celebrating my husbands 85th birthday recently along with our children and grandchildren. The restaurant was lovely and the service was great. I realized my husband couldn't hear the lively conversation well in the somewhat noisy restaurant. I observed he was sliding into his own quiet world where he often goes…..singing and talking giberish quietly. The waiter was looking curious. When we got up to leave, I thanked him and told him with a smile….."This is what alzheimers looks like". He said "really? " and smiled back.
    A good time was had by all.

    • You know Allen there are so many who joke around saying "I think I am getting Alzheimer's." What they don't understand is that this disease is no joke. It's a terrible debilitating condition. Without ones memory who are we? However, on the bright side, it also shows that people are becoming more aware of Alzheimer's; but until they become more educated, let them joke.

    • My wife and I decided 4 years ago after my diagnoses, that we will be forward about telling people. It has worked well so far. I did decide to leave a position with a foundation because I felt I was forgetting to many things, like calling people back. My dad had it when he passed away, so we are familiar with the process. The thing is, that it is a different process for everyone.
      When I submitted my resignation, people spoke with us after and were grateful that we were being open about it. I have had quite a few, including close friends that, did not believe that I did have it. But I think most are in tune now. I feel that is a process that you have to go through. Even had a nurse from an Alzheimer home insist that I did not have it because she deals with it everyday and knows what it is.
      Well, we are now living in an apartment that is connected to a care facility. I have been doing well so far, but have slipped a bit. I do not do math or my checkbook, and I used to be good at math. The up part for me is that I can still drive and talk too darn much. But I try to get involved as much as I can. Just got all our tax papers done by a CPA and realized that I should not mess with the paperwork again. We swore that we would not worry and be happy. Well that is working pretty well. Better than sulking or hiding. And it is fun!

  8. I,too, have had the same statements said to me. Of course, then I explain what my diagnosis is. I'm a retired Speech-Language Pathologist and, therefore, have some additional information – at one point in my career, I was the person who administered the tests and made the diagnosis. So far, my own case is fairly mild and I work very hard to keep active ( both for my brain and for keeping up my physical strength. It is frustrating to hear that comment. Then I remember that I'm leaving a fairly productive life and try to think positively. Keep up the good fights!!!!

  9. As I type this on my new iPad Air, I agree with you 100% I have decided not to share this information unless necessary. Furthermore, I don't tell acquaintances as I notice their shock as they slowly begin to pull away from me, as though I have a contagious disease. In that regard I feel the less said the better.
    However, it's truly shocking than the medical community are so clueless about this disease. A disease that Is beginning to increase as we, the baby boomer generation begin to age.
    More info and education must begin in order to dispel the fear and rejection from people and this needs to begin in the school system. This is not a contagious disease.

  10. Thank you all, for such an incredible wealth of information, and your individual level of experience I have a close friend who I recently found out,(while attending a gunetal of a an extended family member ,whose daughter went to school w/ this friend who has been exhibiting AD symptoms, ,& was diagnosed 6 years ago and has not been getting any formal treatment, or adequate services. She lives alone in an apt, wanders the streets gets lost & disoriented.. The rest is history…she’s 70 years old..

    and deteriorating.

  11. My husband was diagnosed 2 years ago with dementia, probably Alzheimer's, and he does look different in subtle ways. He cannot write anything as coherent as this article – I am impressed with how well written it is. His conversation also gets confused with much searching for words and losing his thought. I tell some people, but not in front of him because he doesn't really accept that he has a problem. I've often wondered if I should insist that we talk about it openly, at least between the two of us.

  12. Thanks for sharing your story. My husband has dementia and I went through a simliar experience when he was in the hospital for a hip replacement.

  13. I've seen Alzheimer's in 3 generations of my family and have become very aware of some of the different ways it manifests itself from person to person. What I find somewhat frustrating is how some caregivers I've encountered leave those affected by this strange disease to sit and disappear further into the disease by grouping them at tables where they all just sit around staring at TV, into the air, or each other. They generally entertain doing things that don't often take into account the abilities of the individuals. I also notice that this happens more often if there is no visibility and interaction of the person's family, guardian, and/or friends. It may be important for some patients that family and friends show up at regular times to provide some continuity, but I also suggest that family and friends also periodically visit at different times to see that the affected person is well cared for at all times. And make sure you introduce yourself and speak to staff members and administrators. They need to know that folks care and are concerned about this person and their well-being.

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