Alzheimer's disease · Behavior · Caregiver · Caregiving · Diagnosis

In the beginning, part 2 / August 6, 2006

My mother had a miserable summer in 2004. She complained constantly and was angry with us all the time, it seemed. Her most persistent complaint was about her legs–she’d broken her hip three years earlier but had recovered extremely well from the replacement surgery. We’d followed up with the orthopedic doctor every six months since then. But now my mother upped the ante, and the doctor ordered an MRI and a vascular test, just to make sure something hadn’t gone awry.

Both tests returned normal results, but my mother was adamant: her legs were killing her and no one wanted to help her. Later on I learned that Ancient Ones often communicate depression and other psychological problems as physical aches and pains–and I’m now almost sure that my mother’s leg pain is the measure of her mood. It’s almost certain that she has some arthritis, so I don’t mean to say that the pain is entirely psychosomatic. But I think her reaction to it varies with her overall feeling of well-being. To this day, the leg pain bothers her in the morning, which is also the time she is most vulnerable and troubled. I make a point of giving her an Advil, and I think she responds as much to the gesture as she does to the medication.

But I didn’t know all this in 2004, so I spent a great deal of energy just being exasperated with her, trying to convince her that there SHOULDN’T be any leg pain, that the most sophisticated medical tests had proven her wrong. I now wonder if I aggravated her dementia because her behavior changed noticeably in the fall.

She began to hear my grandfather’s voice, always from another room. At first my sister and I attributed this to waking dreams or wishful thinking, but her accounts became more and more explicit. When she related a particular statement of his to us, we knew that she needed medical attention. I called the local senior center and got a referral to a neuropsychologist who specialized in dementing illnesses.

So here was where the gates opened for us, admitting us into the Forest of Alzheimer’s Disease. Looking back, I feel as if I were in a dark fairy tale–-like Gretel or Little Red Riding Hood. I certainly got lost at times in that I could not at first accept the diagnosis (which came after blood tests, CT Scan, and numerous exams such as the Mini-Mental Status Exam, administered by the neuropsychologist, the psychiatric nurse practitioner, and the neurologist). The only way I could face each day was by postponing acceptance: it would be what it would be, I told myself. I looked for stories of misdiagnoses and odds that were beaten. In the meantime, my mother was put on an anti-psychotic and Namenda which slowly stabilized her.

Prior to her diagnosis she’d had two serious hallucinatory/delusional episodes. One night shortly before Thanksgiving she thought she saw a young man asleep on the sofa in her finished basement. When he awoke to find her looking at him, he fell off the sofa and ran into the laundry room, she told us later. She went back upstairs, changed out of her nightgown (this was at bedtime) and into day clothes, and left the house. Once outside, she debated who to contact–she’d decided not to use her own telephone because there was an extension in the basement and the man could listen in to her call. She decided to call upon the couple across the street and they called the police, who came immediately to the house.

She didn’t call me until well after the police had gone and she’d returned home. I remember that cold, cold feeling in my gut as I listened to her story. The feeling can only be translated as one of No Escape, No Prevarication–in harshly physical terms.

A few weeks later, on the night before Christmas Eve, I stopped at the grocery store on my way home from work and dropped some things off at my mother’s house. She seemed a bit distracted, but I saw nothing especially alarming. At about 11 PM, long after I’d gone home, she called my sister’s house and spoke to my brother-in-law, asking him if he’d seen me lately. He reassured her that I was at home, and she seemed to accept this, so he didn’t bother me. But I received a call at midnight from the neighbor who had called the police for my mother on the previous occasion–she’d just seen my mother leave the house and take off in the car.

I threw a jacket over my nightgown and flew out of the house. It was unseasonably mild and very foggy that night–I sped the short distance to my mother’s house and saw the front door wide open and the car gone. I didn’t know that she’d been looking for me earlier, so in my panic I decided to drive around the neighborhood, widening my circle as needed until I found her. I was oddly fortunate in that she had taken off without releasing the handbrake and so had gotten only to the end of the street. I could see headlights in the distance and headed toward them–she had decided to turn around in someone’s driveway but had missed it and gotten two tires mired in the muck of their lawn. I don’t know how long she’d been sitting there, half in someone’s driveway, engine still running, headlights still on.

When she saw me she hugged me and said, “There you are! I’ve been looking for you! You never came home from the supermarket!” I wasn’t thinking very clearly. I sat her in my car and drove her car back to the house, then ran back. By this time the police had arrived. We were lucky once again in that they handled the situation very well, and the couple whose lawn she had tilled were compassionate, once they heard the story. I drove my mother back to her house, where she hugged me again and expressed her relief at “finding” me. Happily she went to bed. I lay down on the living room sofa and watched the clock.

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