Three years ago Ann Davidson published a best-selling book chronicling one year in her life as a caregiver to her husband Julian. Alzheimer's: A Love Story is a heart-rending tale of the joys and sorrows, the tears and smiles they both experienced during the year.
I met with Ann in her Northern California home at the start of February primarily to write an article about the specific issues related to spouse caregiving. What I learned was so much more than this. During the highly emotional meeting, I discovered how Ann and Julian have managed to keep the love in their relationship very much alive and kicking.
"The hardest time of my life"
Julian, a leading physiology professor at Stanford Medical School, was diagnosed with Alzheimer's Disease in 1990: he was just fifty-nine and they had been married for thirty years. Six, sometimes difficult, years later, Ann was faced with what she refers to as "the hardest time of my life" - the acknowledgement that she could no longer care for Julian at home. She made the difficult decision to place him in what she refers to as "a truly wonderful place."
"I never ever visit Julian out of obligation"
Since this time, Ann has visited Julian twice a week. They share walks around the nearby lake, sing songs together, or sometimes simply hold each other. "I never ever visit Julian out of obligation," Ann says. "Visiting him is always rewarding and meaningful to both of us…it's one of the best ways I can think to spend my time, and is one of the most important things in my life."
"I don't really have a husband any longer. . ."
Caring for a spouse is very different from caring for an elderly parent or relative. As Ann explains, the emotions are often far more complex and poignant."I still have a great deal of love for Julian. I'm not disgusted by him, I'm drawn to him…I still get pleasure from being with him…It's not a sexual feeling anymore, but it's such a familiar and comforting thing to be with him." And yet, she acknowledges, "I don't really have a husband or a marriage any longer. Julian hasn't used my name for years. I don't think he has any real cognition of our marriage. I just don't have the kind of life that other married couples around me have, the kind of life I imagined I would have at this age."
Feelings of loss and preciousness
This feeling of losing a partner began for Ann in the very early days with Julian's Alzheimer's diagnosis. In her own words: "I felt there and then that it was all over. I spent most of the first year after Julian's diagnosis grieving a death, and yet there he was still fit and healthy. I suddenly realized that we had to make the most of things - I had a new sense of loss and preciousness at once."
There's still a person in there
So Ann and Julian decided to focus on the good things they still had together, an attitude that Ann describes as her "Pollyanna" behavior. "We decided to identify things that give us both pleasure. I may not have a traditional husband, but Julian is very much alive; there's still a person in there.
"We always hold hands," she says. "And I now do it slowly and with intention. I sit in his lap, I snuggle up against him, I whisper in his ear and he laughs...there's a real intimacy between us still and he loves it."
What does it mean to 'know' somebody?
"But does Julian still know you?" It's a question Ann is asked many times by people curious to understand what it's like to lose a partner slowly to Alzheimer's. In response, Ann asks them to redefine what they mean by 'know.' "I have an open definition of 'know'," she says. "Some people have stopped visiting Alzheimer's patients because they have defined 'know' in their own way, and it lets them off the hook. I've never had a visit with Julian where he didn't respond to me in some way. I have to accept that there may be a day he doesn't, and I also know that I'm not ready for that."
The importance of forgiveness
Ann's attitude is edifying, and yet she readily admits that it is an attitude she had to learn, not necessarily one that came naturally. "People often tell me how lucky I am, but I made this happen," says Ann. "At the beginning, after Julian's diagnosis, I had a lot of anger, and said some very unkind things to him. But by forgiving Julian, and by forgiving myself for the feelings I was experiencing, I was free to see the good things we had in our marriage. I truly believe that if you hang on to resentment and self pity you'll never find joy and happiness. Julian and I have figured out how to have pleasure in a life dominated by the sad disease of Alzheimer's."
"Freed from the daily grind of caregiving"
Ann believes that placing Julian in the assisted living facility played a major role in "finding the joy in Julian." She says: "I can really enjoy Julian now that I don't have to take care of him. Now I can get some real sleep, have a life of my own, and am freed from the grind of daily caregiving, I am free to be more affectionate and more loving towards Julian. However, I do realize that I have been blessed with a cheerful loving person. It must be so much harder if you are caring for someone who is difficult and angry."
Support groups helped ease the feelings of isolation
Ann suggested that family caregivers are too often neglected by society. "Caregiving is very isolating. No one really knows what you are going through unless they are experiencing it themselves." She admits to having found great solace in community support groups for spouse caregivers. "The groups I went to gave me the strength to carry on day to day. While being depressing at times, they were also strangely uplifting and inspiring."
While Ann says that visiting Julian is one of the joys in her life, she is eager to point out that "it's not the only thing. Caregivers have to learn to take care of themselves," she continues, "otherwise we can't go on. It's not being selfish, it's vitally important. After all, what use am I to Julian if I'm burned out and broken down?"
It was a very emotionally charged interview, and yet driving away from Ann's house I too felt strangely uplifted. And I remembered one of Ann's comments: "Why isn't all this heart-breaking? I don't know. . .These days when people ask, 'How's Julian?' I reply 'He's adorable!'"
Source: http://www.eldercare.com
Forget yourself for others, and others will never forget you.
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