Finalist in the Santa Fe Writer's Project Literary Awards, Eric Hoffer First Horizon Awards, Reader's Favorite Awards and Indie Excellence Awards
Interview with Marie Marley by Judy Nelson, JD, MSW, Professional Achievement and Personal Renewal Coach July 18, 2011
- Q: What were the first signs something was wrong with Ed?
- A: There were little signs many years before it became perfectly clear that something serious was wrong. Ed did things we all do, like forgetting where he put things or mixing up people’s names. Over the years, his memory and confusion worsened very gradually and I constantly made excuses for him. Finally, one night during a casual conversation he told me he didn’t have a kitchen in his apartment. That’s when I had to accept to cold, hard truth. He was demented.
- Q: How did you balance your personal needs with the need to take care of Ed, especially before he went to live at the Alois Center?
- A: Actually, I don’t think I did balance the needs. I focused my life almost exclusively on taking care of Ed. After he moved to the Alois Center, I felt lost. I had spent so much time for so long taking care of Ed’s every need that I had no earthly idea how to spend my free time. In the beginning I visited him two to four hours every day. Later, I slowly returned some attention to my own personal life.
- Q: What did you do to maintain your sanity before Ed went to Alois?
- A: I almost didn’t keep my sanity. The only thing that saved me was that I had an online caregiver coach from the Cincinnati Chapter of the Alzheimer’s Association. I emailed her my thoughts, feelings, and frustrations every single day and she answered me with empathic and supportive responses. I don’t know what I would have done without her.
- Q: What was the most distressing aspect of caring for Ed?
- A: The most difficult thing was simply standing by helplessly while the mind of this formerly brilliant professor and lawyer continued to deteriorate day by day. It was so sad.
- Q: What was the most rewarding part of taking care of him?
- A: When for brief periods he became perfectly lucid. At these times he expressed love and affection for me, praised my accomplishments, and gave me encouragement. There were brief periods of time when I had my “old Ed” back.
- Q: Tell me the funniest thing that happened while Ed was at the Alois Center.
- A: The funniest incident was when he called a cab to take him to buy some vodka. Of course, the Alois Center didn’t let him go!
- Q: What was the most painful decision you ever had to make on Ed’s behalf?
- A: Without a doubt it was signing him up for hospice care. I felt it was tantamount to signing his death warrant. I know that’s silly, but it’s how I felt.
- Q: How did you finally come to accept Ed’s dementia?
- A: At one point I began taking him little stuffed animals and interacting with him as though he were a small child. Much to my surprise he reacted with joy and delight. Soon it became enough for me just to see him smile and hear him laugh. I didn’t really need the “old Ed” anymore. That’s when I knew I had come to terms with his condition.
- Q: How has life been for you since Ed died?
- A: Despite my grief, life has been good. I’m very fortunate because shortly after his death I was offered a wonderful job in Kansas City, where I moved and have started a new life. Making this major change has invigorated me. I think life would have been far more difficult had I remained in Cincinnati.
- Q: Why did you write this book?
- A: In the beginning I was writing it as a form of therapy. It was a way to express my grief and also a way of keeping Ed alive in my heart. But then I became interested in learning how to write better, and I fell in love with the project as a creative outlet.
- Q: Are you working on another book now?
- A: Yes, I am. I’m planning to write a series of books relating to my profession – grant writing. And I think everything I’ve learned about marketing and publishing for this book will help me with those. This will be a sort of training ground for my new books.
- Q: Do you worry about getting Alzheimer’s Disease yourself?
- A: I probably will get it because several of my aunts, uncles and other relatives had it. But I won’t mind provided I’ll be as happy and contented as Ed was. I’ve already directed the friend who will be my caregiver to be sure to have a geropsychiatrist see me if I do develop Alzheimer’s. I did this with Ed and even though he was still demented, the medications the doctor prescribed made a tremendous difference in his mood and overall sense of well being. He was definitely a happy camper. Not your usual Alzheimer’s patient.
- Q: Is there a question about Ed you always wanted to answer but no one ever asked?
- A: Yes, there is. And I’ll answer that question as soon as someone finally does ask it!