Breaking the News of Alzheimer's Diagnosis Part 1

I remember being diagnosed with some scary things in the past.  I recall walking out of the doctor's office and sitting in my car in the silence thinking to myself... how on earth am I going to tell my family? my friends?  I'm unlucky enough to have gotten more than one of these diagnoses and having this experience more than once as a result.

I am no expert on how to tell people about an illness, especially the scary ones.  In fact, I've not been particularly good at it in the past.  Along the way I have learned a few things I'd like to share with my Alzheimer's Disease Health Activist friends and I hope they will let me know what they think....

I think the most important thing to do first is to ask yourself some questions that may help you.  Some examples might be:

1. Who do I want to tell?  Do I want to tell family? friend? co-workers?  the person I'm dating?  neighbors? a church leader/pastor?
2. Why do I want to tell them?  Am I looking for support? assistance? to explain recent changes they may have noticed?ask for prayer? ask for privacy?
3. What do I want them to know and understand?  How much do I want to tell them in the beginning?  What is this disease?  How does this affect me personally?  How unpredictable it can be and how I will change with it?  It's not contagious?  What am I doing for treatment?  That it's not something else?  How they can help me?  What not to do for me?
4. What is the very best way to tell them?  With a pamphlet, a phone call or face to face?  By reading a book or website about your condition together? By going to an educational class or support group together?
5. What kind of a response am I expecting?Shock or silence might mean it's difficult for people to respond to you right away, but shouldn't be misinterpreted as judgment or a lack of compassion.  Be ready to give them some time to absorb what you've told them. Fear or tears may make it necessary for you to comfort your loved one just when you are needing comfort yourself.  Hugs may hide the questions and worry they have.  Disbelief is a normal response when someone doesn't understand a disease or what your experience has been like.  Questions are healthy and are best answered as they come up.  Telling your loved one that you want them to ask you questions any time and you'll sit down with them to explain the answers is often helpful.  Stories about others with your disease and suggestions they might give you are a normal part of your loved one's challenge of recognizing what is happening to you.  It is also a way for them to show you they care about you and are trying to help, even when the stories aren't especially helpful.  Offers of assistance may be the only way they know to help you and show you that they care about you. 
6. Am I ready to do this right now?Most people will not know how to react to a diagnosis and will take their cues from you.  Verbal and non-verbal cues are really important to give them when you talk to them about your illness.  Maybe you don't want to talk about the illness yet, but just wish for them to be aware of the diagnosis.  Telling them this will be important for both your comfort.  Perhaps you want them to question you - this too is important to tell them.  

Alzheimer's Disease is a little different than other chronic illnesses, although these questions pertain to them as well.  The Alzheimer's patient may want to prepare themselves with something in writing that will help them remember what they want to say when they talk about their diagnosis.  Sometimes having a friend to help you might be helpful too.  The impact of two or more talking about the disease is much greater than a single person alone and who may be vulnerable to forgetting much of what they want to say.

How did you as a patient or caretaker handle telling about an Alzheimer's Disease diagnosis?  Did you handle it differently for AD than you might have handled it for another disease or disorder?  If so, why do you think it was important to do that?

As a chronic illness patient, I find myself constantly having to tell someone about my health issues.  Yes, it gets old and can be frustrating at times.  I do tire of the constant suggestions and stories of others that may or may not apply.  I also acknowledge that this is an important part of living with the disease.  If I - the patient - am not motivated enough to educate those around me about what is happening to me, then who else will be?