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The Barry Petersen Interview (Page 3 of 3)

An Interview with Barry Petersen

Barry Petersen: In fact, people who were my co-workers did not understand what was going on. Afterward, they read the book and said, “My God, I had no idea!” These are people I work with every day, which gives you a pretty good indication of how clever you can be when you try to hide what is going on. I mean, instinctively, you do this. I do not mean it as a purposeful thing. You just say, “I am doing fine,” but the mistake I made was more than that. I protected other people from how Jan really was. I did not want Jan to be embarrassed. I did not want people to think that somehow this vibrant person had changed so dramatically that they should alter their view of her, even though she had changed. Even though I thought I was being honest when I sent out emails and told people about this, the fact is, I did not communicate it. We are now in our third year of assisted living and there are still people who are really angry with me for how I put Jan into a facility. I think my mistake was not being as open as I could have been about how Jan was doing.

Gary Barg: What would be the one most important piece of advice you would like to share with family caregivers?

Barry Petersen: Do not do it alone. Do not get sucked into this vortex, into this black hole; because if you do, it will kill you. If it kills you, what good is that going to be for the person you are taking care of? For some reason, we get a martyr complex when we are caring for someone with this disease. I do not know what it is. I have seen other people. I have had the same thing. I can do it alone. I can take care of it. The more the demands are, the more you deny that you are suffering anything from this. It will take you down; and if you do not realize it, then you are going to hurt the very person you are trying to help—the person with the disease.

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