My name is Ann Diamond and I thought I knew about Alzheimer’s disease. My dear, sweet grandmother was diagnosed with the disease when she was in her eighties. I was her caregiver. I ached over the dazed look in her eyes, the confusion she felt, and the fact that she could not longer read a book or follow a television program. I cried when I asked her who the president was and she answered with, “That young man from Texas.” I said, “Oh wonderful, you know who George Bush is!” She looked at me, confused and said, “Who? That’s not Ladybird’s husband!” Lyndon Johnson, she was living in 1963. I cried over the many events in our family that had happened since 1963 that she no longer remembered. And that was one of her good days. That day I learned not to cry any more.
Yes, I thought I knew all about Alzheimer’s disease, a disease that only old people get. So you can imagine my shock when last year, at the age of 56, I was diagnosed with Alzheimer’s disease, the old people’s disease.
I never would have known I had a problem if I had not had a job. I’ve worked since I was 15 years old and had never been written up for poor performance, or carelessness. But here I was, getting written up for carelessness. I was also anxious and could not concentrate as my office was in the lobby, which got pretty rowdy and loud at times. But the write-ups were the worse. I knew something was wrong and decided I must have a brain tumor; something that could be removed and I would be OK.
So I made an appointment with a neurologist and was given some initial testing and ended up with a diagnosis of Mild Cognitive Impairment. I was put on Aricept. Aricept; wait a minute, that’s what Nannie took for Alzheimer’s. And after the final test, a PET scan, there it was, a diagnosis of Early Onset Alzheimer’s Disease. But I’m only 56. How can this be, it’s an old person’s disease. So I did some research. People as young as 19 have the same diagnosis. I was shocked to learn that this is not just an old person’s disease, this is everyone’s disease.
After my diagnosis, people treated me differently; some treated me as useless, damaged, not able to perform, careless. While other’s told me, “you must have been misdiagnosed, you don’t show any of the signs.” When telling my friends, they all looked at me strangely, and I felt that they did not believe I was telling them the truth. But then again, Alzheimer’s is an old persons disease. My true friends knew I was telling the truth and they were and are there for me. My family, who at first were in denial, has accepted the facts. They are and will always be there for me. And all of my affairs have been put in order.
But even my family and true friends could not talk to me about being 56 years old and having this disease. On my first trip to the neurologist’s office, there was a woman about my age in the waiting room who told me she had Alzheimer’s disease. I felt sorry for her but thinking I had a brain tumor, I didn’t give her much thought.
But there I was, with no one to talk to who understood what I was going through and I remembered the lady in the waiting room. And I thought, I’m not the only one here in Beaufort in this situation. So I went to Alzheimer’s Family Services and asked Pat and Arlene, “When does the support group for people with Alzheimer’s disease meet? I need to join.” They looked at each other like deer in headlights and then they looked at me and then they looked at each other again. It seemed like a foreign concept to them. And they told me they only had support groups for caregivers. And I asked, “Well what about me?” And I told them about the woman in the waiting room. “If there are two of us, there are probably more of us. We need support too, we need someone who knows what we are going through. We need someone to talk to also.” And that was their Ah-ha moment. Because most of the people who are diagnosed with this disease are old and already in the latter stages, there is no need for a support group. But, those of us with young onset AD can contribute to a support group and need a support group. We need someone to talk to who knows what we are going through; people who have the same fears that we have.
So these two wonderful ladies started a support group for the unknowns, the people who shouldn’t have AD but do; the people who, with just a few accommodations are still functioning but are not quite sure what will happen to us 5 years down the road; those of us who are scared.
We are a small group right now. We have come to know each other and care for each other and help calm each other’s fears a bit. But mostly we make each other know that we are not alone in this journey because we have each other to lean on.
It is my strong desire that as you leave here today, if you know someone in the early stages of AD that you tell him or her about our support group. Encourage them to join us, as this is a journey that should not be taken alone. We have our family and we have our friends but they are dealing with their own concerns and fears about the diagnosis. They cannot know how we feel or what our fears are. We, at this group, do know. We know that no man is an island and that no man stands alone. Each and every one of us need help and support.