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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Jan 222014
 

Charles WarnerTwo years ago, at the age of 69, I was diagnosed with Alzheimer’s disease. Shortly after receiving the diagnosis, I began to think a lot about the future. The more I thought about the future, the more I realized that I needed to implement plans for the inevitable progression of the disease while I had the ability to do so. This also seemed much more proactive than just sitting around worrying about having Alzheimer’s.

Prior to my diagnosis, I was a practicing attorney in civil litigation for 45 years.  During my career, I did not worry too much about what the future held for me and my family. I simply assumed that I would sell my law practice, and, on occasion, hire myself out as a private mediator of legal disputes. I had been working as a mediator for many years and was certain that I would continue after I closed my actual law office. That, of course, did not turn out as expected.

Accept Your Diagnosis        

As a person living with Alzheimer’s, I have learned that acceptance is essential in making meaningful plans for the future. I know it may be difficult, but accepting the reality of the diagnosis is absolutely necessary to enable those of us living in the early stage of the disease to take the appropriate steps to plan for the future. You want to do this now while you still have the capacity to make your wishes known and have them memorialized in legal documents. While it is important to plan for the future, do not let the fear of the future ruin the life you can live now before the disease progresses.

What does it mean to “plan for the future?” In my opinion, among other things, this means to see to your estate planning. Estate planning is the preparation of wills, trusts, advanced health care directives, and generally what you wish to have happen with all of your assets and possessions upon incapacity and/or death. Collaboration with a legal professional is not required in order to plan for your legal and financial future. You can find copies of advance directives and other estate planning forms through the American Bar Association, office supply stores and your state’s health department or local library.

If you choose to work with a professional, a well-qualified legal advisor can help you prepare the required documents.  Locate an elder law attorney who has expertise in the preparation of the documents necessary to carry out your wishes as to the disposition of your real and personal property. Attorneys doing this type of work usually describe themselves as having expertise in “Estates and Trusts.”

Family and Financial Matters

Discuss your estate plan with your family.  Make a list of the assets you possess. What are they worth? Use the legal and financial worksheet to help you organize this information and share it with your family or your lawyer of choice.

I personally found a great deal of peace in completing the legal documents. It has been completed and implemented now and I no longer have to worry about it. Those of us with Alzheimer’s are better off looking at what we have left… not obsessing about that we have lost.

 

Chuck Warner is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG). He encourages others living with the disease to be actively involved in planning for their future and engage in a fulfilling life. “An Alzheimer’s diagnosis feels like the end of the world, but it’s not – you can make a difference.”

 

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