The Disease

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I never intended to write a book. I did it because I owe. 

I refer to my experience with Alzheimer’s Disease and Jan as a journey, and not one that I want any other person to have.  But they will. In the United States today, some 5-million people suffer from Alzheimer’s. By 2050, that number could more than triple. And every single one will need intensive, personal caregiving. 

Put another way, the Alzheimer’s Association (www.alz.org) says that today one person is diagnosed with Alzheimer’s every 70 seconds. By 2050, that will be every 33 seconds. 

There will be many, many people on my journey. 

And the ones who have already passed this way are the ones I owe. They reached out, they explained, they shared strategies for helping Jan and they cried with me…yes, a lot of tears…when they saw that I was faltering. They knew about that because they had faltered a time or two. Some still do. 

Now I am the one on the journey. And I know there are people back there, just now – today – starting at the beginning, who have no idea what is coming. 

They do not know how they will lose the one they love but still look across a kitchen table and find the body physically intact, smiles and all. Only the dimming glow in the eyes will give away what is happening inside. 

They do not know how they will reach the way stations of anger and grief and find that it doesn’t end, that the next day there is a new change, a new deterioration, new anger and grief. There is no such thing as closure because the mind of the person with The Disease will create detours, and the person will seem to spring back. And then, in an exercise of demonic cruelty, the mind slips away…again. 

When Jan was diagnosed in 2005 at age 55, I read about The Disease and studied what could be done and knew the changes that were inevitable. But those were words. Being intellectually prepared turned out to be no preparation for what I was going to feel, endure, rail against and finally discover — that The Disease would continue outwitting me. It defeats me, still, to this day when she slips in some new way.

So I wrote a book. If you are the next person starting this journey, I offer this as only the way I did it. If it helps, then I have begun paying back what I owe to those who helped me. 

If you know someone with Alzheimer’s, this is a way to see inside and understand what that person’s caregiver is facing, and perhaps that will help you understand. 

I call Alzheimer’s “The Disease.” If you read the book, you will see why I came to think of it as a demon, a material thing, almost a person, because I needed that to understand my feelings about Alzheimer’s. I can summarize those feelings in one word. 

Hate.

11 Responses to “The Disease”

  1. Dear Barry,
    It has been so long since we’ve been in touch. I’ve only learned of
    the tragedy in your life through Jill not long ago. Words cannot
    express my sadness for what has befallen you both. If only I could
    do something to help please know that I would. Life can be cruel,
    but as we grow older it becomes apparent how important it is to
    have the love and support of our family and dearest friends. I
    salute you for your courage and want you to know that I have always
    admired your talent, your extraordinary work and can only wish you
    all good things for the future. I find your website impressive
    and heart rending, all at the same time. I know that all who
    read your book will be moved beyond words. Be strong, my friend,
    and we can only hope some day some brilliant researchers will find
    the answer to this horrendous plague.
    Your old friend,
    Norman Morris

  2. Stanci says:

    Barry – Your story is just so timely for me and I wanted to thank you very specifically for addressing that life has to go on for the caregiver. My mother was diagnosed at 56. She is 60 now, and in the final stages of “The Disease.” You know what that means for her. But what I struggle with daily is my constant worry about my father, who just turned 60. I beg the universe every day that he will find another love to replace my mother and be able to move on with his life. Thank you for telling your story so honestly. I’m in your situation, and I understand how excruciating it is to completely lose your spouse while she’s still sitting there. I told my father just a few weeks ago that he has our blessing WHENEVER he is ready to move forward with his life – hopefully in another relationship. He thought that was the craziest thing I’ve ever said to him, but I have my fingers crossed. :) Thank you, Barry.

  3. Tony P says:

    A celebration of life, love, and the need for the human connection. Barry, I wish you and yours all the best.

  4. Laurie Mann says:

    I don’t normally cry when I watch Sunday Morning, but Jan’s Story was
    very moving.

    The “disappearing” is such a powerful point for thinking about someone
    with Alzheimer’s, for the person you know really is disappearing. And
    that’s something that is so hard for many people to understand.

  5. Stuart Hellinger says:

    Barry –

    I just saw your piece about your wife on CBS Sunday Morning. I just had to say how moved Iw was by the piece.

    So far, I have not had to deal with this hideous disease in my family, buy I did have a neighbor who suffered from it a few years back. He was a wonderful elderly gentleman with a wonderful wife and watching him deteriorate and watching the toll it took on his wife hurt quite a bit. I grew to love these people and would do whatever I could when I was asked.

    I’m happy that you have someone to help you through this. Anyone who cricicises yoiur relationship is a fool.

    Thank you for telling your story. I wish you well. I now have to buy a copy of your book.

  6. Anne Roper says:

    I cried when I saw your story on television. I watch Susnday Morning every week and enjoy it all but your story made me cry. You are such a great man to recognize that she would want your life to go on. I admire your courage and hope the best for all of you. I worked in an altzheimer’s unit for 3 years and I know the heart break that this horrible disease brings to all it touches. the wonderful lady that you have in your life is such a blessing to all. May God bless you all.
    Anne Roper, Burleson, Texas.

  7. Harriet and Stan Hendel says:

    Dear Barry,
    My husband and I just finished watching “Sunday Morning” and saw your
    magnificent, touching and beautifully moving story about your wife, Jan.
    Your courage–in telling and sharing this very painful story–is obvious
    but so desperately needed. I had no idea that Alzheimer’s Disease
    affected so many people. We do have a friend whose wife is now in a
    nursing home with Alzheimer’s and it was an agonizing decision to
    place her there~as it must have been for you. I want to read your
    book. What a tribute to your wife! But we must also say how happy
    we are for you that you have met someone to share your life and Jan’s.
    She must be a very special and unique person.
    Thank you again for telling us your story.
    Sincerely, Harriet and Stan Hendel

  8. Allison Burnham says:

    I just watched your the story on Sunday Morning on CBS. It was
    informative and heart wrenching at this same time. Although I am
    not in your shoes and honestly hope never to be, I commend you, your
    partner, and your wife for being so honest in telling your story.
    Anyone that would judge your situation harshly is a person that
    doesn’t understand love, it’s unending circle in one’s life, and in
    the world. Thank you for sharing. This story will stay with me for a
    lifetime.

  9. Dear Mr. Petersen:

    I just saw Jan’s Story on CBS Sunday Morning and I was so moved by not only the story of the love for your wife, but the bravery you and your family are showing by sharing your story. I believe you have helped more people than you can imagine with your honesty and openness. Thank you for your courage and for helping redefine the definition of family.

  10. Denise Martell says:

    I just saw your piece regarding your wife, Jan, and her debilitating disease. I don’t condem your decision to have a new relationship, I applaud youre courage to take the good times as the come. Life is too short not to. Your piece made me cry. Good luck.

  11. Kim says:

    I just watched Sunday Morning and Jan’s story and felt I had to respond. I cannot imagine anyone judging you harshly. When you compared visiting an Alzheimers patient with attending the funeral time after time it broke my heart. I admire your courage and strength and respect beyond words Mary’s relationship with both you and Jan.

    I know the journey will never be easy but I wish you continued strength and peace.

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