At first, it seemed that Paul Meyers was merely forgetful.
His longtime partner, Anthony Iero, would say, "We talked about that yesterday."
And Meyers would say, "No, we didn't."
Then things got worse.
Two years ago, Meyers died of Alzheimer's disease in a Philadelphia nursing home. But Iero has not given up on his personal battle against the disease that took his partner of 34 years. On Sept. 24, Iero will walk the "Memory Mile" as part of an Alzheimer's fund-raiser for the University of Pennsylvania's Institute on Aging. The event also includes a 5K run.
Iero spoke recently about the human toll of Alzheimer's and why he remains involved.
Tell us about Paul's disease and how it progressed.
Paul died when he was 71, two years ago. I tried to track back as to when [symptoms] first happened. The earliest I could detect when he was 62. We would have these conversations, and the next day he'd forget. I'd get angry with him. I didn't know he had memory problems.
He had some problem with financial functions. He'd get things mixed up. Directions were a problem for him. He would always take the long way home. Things like that. I didn't put two and two together until much later. It progressively got worse. Even ordering food at restaurants was difficult for him. So I started ordering for him. I still didn't think much about it.
But then I realized it was more serious. I knew long before he was diagnosed that he had Alzheimer's. I just didn't want to admit it. When he finally went to the doctor, it hit like a ton of bricks. I cried excessively. Paul didn't know what was going on.
After that, it got progressively worse. His temper got worse. He'd wake me up in the middle of the night and say we had to go for a ride. He always wanted to go home, even if we were in our house. You have to learn what to say just to please them. I'd say, "OK, Paul, let's finish dinner first, and then we'll go home."
He would walk out of the apartment and I wouldn't know it, and then I'd go try to find him. One day he got in the car and drove from Center City to St. Joseph's University. A student found him wandering the campus and called me. He stayed with Paul until I got there. Those were some of the tough challenges.
What's it like to see your partner fade away?
It was just horrible to live that way, for both of us. He wasn't really aware of what was going on with him. He denied the fact that he had a memory problem, whereas I knew it was going on. My job at that point was to make him as comfortable as possible. That was my job during his entire illness. We were together 24/7, which was difficult. But he was lost without me. I had to be there for him.
I've always said that Alzheimer's was worse than death. Death is final. It's over. Every day I would see him get worse and worse. There was no end to it. It just was horrible to see him, to deal with that, his fading away, deteriorating, not able to speak, not wanting to eat.
I would take him out and be embarrassed at times because he would talk to people and not make sense. Some people could deal with it better than others. At one time, I would shy away from seeing people. Then I decided we would go out and do the best we could. Before, we were always going out to dinner and having friends over.
Eventually, he had to go into a nursing home?
It got to a point where he was getting physical with my coworkers. I couldn't leave him alone, so he came to work with me. My sister finally said, "That's enough, let's take him to a crisis center." It was a Pennsylvania Hospital clinic, and they suggested putting him in a nursing home. At that point, it was probably best for me. I was able to live without having to worry about him 24/7. Even though I still did worry about him 24/7.
I made it a point to make him as comfortable as possible. That was my goal in life. That's why I put him in the nursing home. I spent a lot of time there — three to four times a week. The home gave me free range of the kitchen. I would make pasta, just like at home.
If you love someone as much as I did Paul, you do those kinds of things. We were together 34 years. I wasn't about to abandon him. I saw how this man went from being this terrific guy and loving guy to this shell. I needed to protect him as best I could. Even when he was well, he always depended on me. When he was sick, he knew when I was there, he was so much better.
He was there a year and a half. Then he caught pneumonia, and that's what did him in.
Two years after his death, you're still active in the cause. Why is it important to you?
I continue to go to Alzheimer's support group meetings. I like the people. I enjoyed the meetings when Paul was alive, although Paul hated them. I found good advice there that helped me to help Paul. Now, if I can help people in any way, I try to do that. Also, I want them to know I'm getting better, and that's what's going to happen to them, too.
On Nov. 11, there's the larger Walk to End Alzheimer's. We have what we call Paul's Team, and I'm the captain. My group gets larger and larger every year. For the Penn run, I get one or two people, maybe a family member or a friend, to walk with me. We walk through the campus on a fall day, which is absolutely beautiful. I always think of Paul when I do it.
I think of Paul every day. I have his ashes in the house. I walk in the door and say, "Paul, I'm home." I kiss him. I always told Paul I was going to take him home one day, and I did. The friends who walk with me are there for me, and I'm there for him. So I walk for Paul. And I do it to make people aware of the disease and to bring it out in the open and, hopefully, make the people above find an end to it.
What words of advice or encouragement do you have for anyone in a similar situation?
When a spouse has Alzheimer's, it's especially difficult because it's someone you love very deeply. Hang in there. There is life after Alzheimer's. There really is. I dealt with it for nine years. It was horrible from the beginning to end, especially the end. In many ways, I wanted it to end. I thought about killing/suicide — going into the nursing home and killing him and then killing myself.
But you can go on and remember the good things you had with your partner. My mind was clouded by the fact that he was sick. I sometimes can't get past that cloud and remember the good times. But I'm hoping that one day that cloud will clear and I'll be able to see Paul the way he was in the many years we were together.
There is life after Alzheimer's. I'm living proof. It's rough. And you think about how sad it is. But you move on.