His shoulders slump and his head bows as if his very life force has been suddenly drawn out of him. His face reflects the pain and confusion that his mind and heart are toiling with, struggling to grasp a wisp of reality and understand that the impossible has indeed happened. "I just can't believe it; I can't fathom it," he says. "Are you telling me the truth? She's not available anymore?" This happens every time my dad asks about my mom, the love of his life, his partner and companion, and in recent years his anchor who steered his mind to safety and security in the here and now as it's slowly being undermined by Alzheimer's disease. She was his North Star. It's been almost six months since she died.
For the first couple of weeks, we went through this terrible shock and grief with Daddy multiple times every day when he asked, "Where's Patricia? Where's my wife?" Then, miraculously, he began to recall that she was gone as soon as we told him and would despondently reply, "Oh yes, now I remember." He was still dejected and grieving, but the horror that flattened him when the news was new every single time was lessening. One day in November, we set out for a walk with his dog, Jackson. Out of the blue, he suddenly stopped at the end of the driveway, his body slumping as if under an unbearable weight. "I miss my wife, " he said with tears in his eyes.
Oh, Daddy. I miss her so much, too.
I hoped he would continue to have that degree of memory about our great loss so that, on some level, he could process and move through his grief. For some months he did, although depression seemed to be setting in, and his former zest for life was heartbreakingly gone. But in January he became very ill with a virus and sinus infection, lost his appetite and - as often happens with dementia - his cognitive abilities drastically worsened. Once again, the loss was fresh almost every time he asked about Mom.
Slowly, Dad's health has improved - but his memory of losing his wife remains a wild card. We never know if he's going to remember or not. I never lie to him; it just doesn't feel right to me. At times, I divert or distract. When he asks, "Where's Patricia?" I might say, "I'm here, Daddy - it's Amy, your daughter!" And then I give him a big hug and a kiss, which sometimes will draw his mind away and avoid the conversation that rips our hearts apart each time. Sometimes he cries, says he's got no family left and surmises that he'll soon "go" too. Nothing hurts my heart more than that. I'm grateful he responds to love, hugs and kisses, and that much of the time he does seem to know me. Three times recently he's actually called me by my name. I want him to understand that he's never alone. I tell him Mom is in heaven, but she's also with us in spirit every minute. That comforts him. "She was a really good one" (his code for his favorite people in life), he said the other day. "She was a real knockout."
There are a million little ways throughout each day that I see Dad's mind drifting at sea without his North Star. It's becoming increasingly difficult to get him awake and out of bed - no longer can we say Mom is waiting. When he wasn't hungry, Mom could urge him on; it was a big part of their daily ritual as a couple to eat together. At times now, every bite is a coaxing exercise. He used to be perfectly happy going out to stores and restaurants - as long as Mom was with him. Now he gets anxious about why we are there and what he's supposed to be doing. I do my best to come up with new rituals and distractions. But none of us can fill Mom's shoes.
The night that Mom died, Dad went home from the hospital with one of my sisters before I did. When I got home, I broke down, sobbing. He came to me and gave me a hug, instantly going into Daddy mode and talking as he did when I was a child with a problem. "Don't you worry now. We'll get through this together," he said, comforting me as only he could in that moment. He's right. As difficult as it is, I'm glad to be here for him. And despite Alzheimer's, he's here for me, too.
Amy Goyer is AARP's Family, Caregiving & Multigenerational Issues Expert. She splits her time between Washington, D.C., and Phoenix, where she is a caregiver for her dad, who lives with her. She is the author of AARP's Juggling Work and Caregiving. Follow Amy on Twitter @amygoyer and on Facebook.
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