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Postby CaroleLB » Sun Jan 31, 2010 11:57 pm

My beloved Beau pass away from PSP on Dec 12, 09. He had some symptoms since maybe '01 and was finally diagnosed Sept. '07. We had just celebrated our 40th anniversary Nov.1'09. He was alert and aware of everything around him up to the end. I was able to keep him at home until he passed away in my arms. When he took his last breath I felt his spirit rise up and this terrible feeling of emptiness and then the realization he was gone forever from my touch has rendered me almost helpless. He was this amazingly, bright, tender artist who was so humble about his talents. I watched him so many hours singing songs with his beautiful deep voice while he painted and moved his body with the strokes of his brush.
My mind gets frantic thinking what could I have done better, more of, should I have had a feeding tube put in (though he made the decision not to have one in), I could have read more to him, talked more to him, I should have found a way to get more food between his teeth. I went back to teaching a year and a half before he passed while my brother watched him during the day until I got home from work. Now I think, why did I go back to work. The quilt of all of it is driving me crazy. I thought I was doing the best I could but now with the weight of this pain I realize I could have done more.
We had his memorial on Jan 18th and had a showing of about 100 pieces of his work. It was a beautiful show and people were truly amazed at his talent and originality. Now I feel guilty I didn't think of having a showing before he died, where he could have appreciated the raves. The quilt is driving me crazy with sadness and regrets. Is this all familiar with those of you who lost someone to PSP?
The last days came so fast. There had been so much time before and now there wasn't enough. I just feel I could have done more.
Peace, Carole
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Joined: Mon Sep 17, 2007 8:13 pm
Location: MtVernon, Wa

Postby Robin » Mon Feb 01, 2010 1:10 am


Your event for Beau sounds very nice. Try not to beat yourself up with guilt. I'm sure you did your best caring for your husband. That's all any of us can do.

I posted a few weeks ago about Beau's passing. See:

Take care,
Posts: 3844
Joined: Fri Feb 20, 2004 2:32 am
Location: USA - Northern CA

Crazy guilty

Postby ellebailey » Wed Sep 14, 2011 5:51 am

You did so much for Beau but I know the "it 's never enough feeling. My Bill is now in a nursing home and I feel so terrible about his institutional care. For 2 years he had 24/7 care at home but I reached the point where I just couldn't do it any more. The care is not what I hoped it would be, he is getting worse, and I am wracked with sorrow and guilt every day. I also am a teacher and find my work does help a lot. PSP is a horrible disease for the patient and those who love them and are responsible for them. Please take comfort in all you were able to do. Beau was very lucky to have you.
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Joined: Fri Jul 31, 2009 6:16 am
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