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The Barry Petersen Interview (Page 2 of 3)

An Interview with Barry Petersen

Gary Barg: I was just wondering, during this process, who was there looking out for Barry?

Barry Petersen: Nobody. I was not just in denial, I was delusional. When I saw the statistics, when I realized that caregivers tend to die before the person with Alzheimer’s, I said to myself, that makes perfect sense—an 87-year-old woman taking care of her 90-year-old husband, the physical demands, the hours—but that is not me. That is not early onset. It really took our live-in caregiver sitting me down and saying to me,” You are going down.” This is a woman who is a retired nurse, who is taking my blood pressure, who is monitoring how Jan is doing, who could really see it. I had to accept what she said because she added something that haunts me to this day. If I go down, if the caregiver goes down, who takes care of the person that you love who has the disease? Her point was very blunt. You take care of yourself or no one takes care of Jan. As she said, Jan will always have people looking after her, but the caregiver does not have that. I think in point of fact, caregivers deny getting help sometimes. Let me go to something else you said which I think relates to this, and that is you use the word guilt. I think in my case, and I do not know how shared this is, there is a lot of guilt that you are not the one with the disease.

Gary Barg: What do you do about it?

Barry Petersen: I talked to people who were good at this; obviously, a therapist is good at this. I asked for their help. They explained this in numerous ways; the most brilliant was the guy in Beijing. I went to him and said, “I am feeling horribly guilty.” This is after Jan is in assisted living in the United States and I am still in Asia. I am having a terrible time getting the wherewithal to get back on a plane and see her. I said, “This is awful. I feel awful about this.” He said, “It is because every time you go back and every time you see her change, you start the process all over again of grieving for what you have lost. It is like going to the same funeral over and over again.” That still goes on today. We were out there last weekend to see Jan and yes, when there are changes, when you see that she has slipped away a little more, it hurts. That old friend, that old foe, guilt, comes back to haunt you. So I do not think it ever goes away. You ask what do you do about it? I guess what you do is you cope with it. It is going to be there and you deal with it as best you can day-to-day.

Gary Barg: That is why I like the idea of an appropriately led support group. Even though millions of people go through caregiving, each and every one of us thinks we are absolutely alone.

Barry Petersen: I think that is on my list of cruelties of the disease. It is so hard on the caregiver, and the caregiver does not know because you just do not realize it. So I think that to be a caregiver in this disease is dangerous, difficult, and lonely; and, if you do not watch out, suicidal. People do not like to hear that, but I think that is true.

Gary Barg: One other challenging aspect we have as the primary caregiver is, so many times, you make a decision and all of a sudden you start getting terrible flack from people you thought were on your side. What can you recommend for caregivers who are going through this issue?

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