Elizabeth Allen: an open letter
Dear brother, sister, son, daughter, friend,
I have Alzheimer’s disease.
I know you don’t know what to say, or what you should do.
I don’t have all the answers – but I hope this letter will help.
First of all, please don’t offer me platitudes.
“You’re fine,” people will tell me. “Don’t worry. Forgetting where you put your keys is just a natural part of aging.”
I’m sure you’re trying to cheer me up, but that’s not a fair acknowledgment when I’ve just confided in you that I have an incurable disease, and that my brain is dying.
As soon as people know I have Alzheimer’s they think I don’t understand or I have nothing to say. Don’t dismiss me.
Include me in your conversations and ask me questions like you mean them: “What were some of your symptoms? “Are you taking any medication? Is it helping?” or “How are you doing?” In other words, let’s have an open and honest conversation. Ask me questions as you would if my diagnosis were cancer or any other illness.
I’m still me.
Alzheimer’s is a progressive disease. There are many stages in the journey between diagnosis and the person you may visualize at the later stages. I’m the same person I was before you knew about my diagnosis. See me as the person I am now, and not who you think I’ll be in the future.
And we’re not all the same. Accept each of us in each phase of our unique journey and enjoy us for all the things that we can still do. Let me feel useful. Let me make mistakes until I come to terms with the fact that I’m not as perfect as I used to be.
Don’t run away from this disease.
If you’re having trouble accepting me as I am, learn as much as you can about the disease. The Alzheimer Society was there for me and they are there for you with the information and support you need.
And this is very important … if you have concerns about your own health, see your doctor NOW. Early diagnosis and medication can make a world of difference to your well-being. And if you do have Alzheimer’s, learn to ask for help. It makes life so much easier for you, your family and your friends.
You can help me and many others like me in our journey by seeing us for who we are.
My name is Elizabeth Allen and I have Alzheimer’s disease.