My Dad with his first born child, Kimberly, who is also my beloved big sister. My father was never especially charming with grown up people, but he adored children
My father kept saying he remembered picking up my sister Kimberly from her crib when she was a new baby, and then, poof, she vanished from his life. But only the memory had vanished because, with dementia of the Alzheimer's type, the patient's brain cannot seem to retain its memory of the recent past.
The truth is that both my sister and I have traveled from our homes in Colorado and Florida to Dad’s home in California half-a-dozen times (each) over the last year and as a consequence, Dad has seen a lot of both of us. But now I’ve moved back to California and Dad sees me every day, he's grown confused about my sister. Where is she?
Why is one of his children in his home without the other? His mind has gone far back into the past and, some of the time, he believes he's only recently out of the Army and World War II. So he asks all kinds of questions about Kimberly--questions that would seem odd if you didn’t know about the effects of Alzheimer’s disease on the memory.
“Is she young?” He asked me one day. “She must be young.” I didn’t say anything. My sister is now a grandmother.
“Who is her father?” he asked on another occasion. Now that's a conversation stopper. I pointed at him (because he is now profoundly deaf) and mouthed the words: “You are her father. She is my sister so you are her father.” He nodded sadly. “Of course she is my daughter, of course. But why haven’t I seen her?”
And then her story became intertwined with the paranoia that is also a part of dementia of the Alzheimer’s type. For a while, my father believed my sister’s husband, Dan (whom he sometimes also thought was her father) was holding her prisoner and keeping her from coming out to see us. Sometimes, he thought her husband was in a conspiracy of “the enlisted men against the officers” and he had a whole weird plot line to go along with that, involving his duties during World War II. Many days he wanted to have a serious talk with me about all of this and often I tried to get him onto another subject.
Once I pretended to call my sister’s husband on the phone to find out if he was angry at Dad and then, discovering in my faux phone call he was not, informed Dad of this. That did calm him for a while.
It is difficult to know what to do. At my Alzheimer's support group the facilitator has told us that we must not feel guilty about “creative storytelling.” This is a challenge in a moral family. Lie to your father? Have my mother lie to her husband? Have the caregiver lie?
But my father's world is not the world it once was and is not, in fact, the real world in which the rest of us are living. Our job is to make him happy and comfortable while we have him with us. Lying to him as little as possible is desirable. Creative storytelling is often necessary. One must adjust one's outlook to help a loved one with dementia.
There's good news in all of this. My sister had a visit scheduled for this Saturday. She was here just two months ago but my father does not remember this. I picked her up at the San Jose Airport and we were both wondering what would happen. He’d never spent so much time talking about how he didn’t know her as he had in recent months. What would he say? How would he react?
We walked in the door. Dad looked up and focused his old, weary eyes. They opened wider for a second and he cried out with joy when he saw her.
“Kimberly!” He bellowed to his eldest child, and the two of them smiled the biggest smiles I'd seen from each in as many years.
Then he started to sing what has become his favorite song: “Hail, Hail, the Gang’s All Here.” The recent past may have disappeared, but he knows and loves his eldest daughter. That is something his disease has not been able to take away.
Kim and Dad again in Palo Alto, and below, Kim and Dad, Christmas 2008.