The Other Side of Alzheimer's

The bathroom mirror was slightly steamy, small rivulets of moisture moving slowly from top to bottom. My face, a little left of center, looked wavy and out of focus, reflecting the way I felt. I thought it was possible that my image would look the same in a perfectly clear mirror, because I was having more and more trouble recognizing myself all the time. When your spouse has Alzheimer’s disease, he or she is not the only one whose face in the mirror reflects someone who is changing. My husband Michael had the disease, but I began a process of changes that were every bit as significant as his; sometimes disturbing, often depressing, sometimes maturing, but constantly changing. The obvious side of Alzheimer’s was the one affecting Michael and was the result of the changes in the brain which altered his perceptions, emotions and behaviors. The other side affected me as a result of witnessing and experiencing those changes and caused a corresponding set of altered perceptions, emotions and behaviors. We responded to the awareness of his loss of understanding quite similarly for a while, each of us reacting with our own explanations and denials. Eventually his awareness faded, but mine only became sharper as I watched him become someone completely different from the person I had married. The mirror of our life began to crack. I remember clearly how I tried to combat his memory lapses with careful explanations of the way things really had happened, the people who were really involved, the place and time events really had occurred. It was wasted effort, my denial that a disease was in play here and that I could not affect a cure. On some level, my reasoning was that if I could correct his memory of things, the disease would be kept at bay and he would be normal again. But what I saw was that my correcting made him uncomfortable, agitated and angry with me. I was not aware then that I needed to change. I was slow to learn that people with Alzheimer’s are always right. No exceptions. There is never an explanation that can change their thinking or remembering something in a certain way. The resentment, uselessness and fear that I felt were very real ways in which I was a victim of Alzheimer’s. It was an unanticipated side of the disease. I was the one who could think clearly and reasonably, but that turned out to be faint praise at best. It took me far too long to let go of the need to correct him and face the reality that being combative was unnecessary and unwise. The choice was to react or respond. Reacting only escalated our emotions into a cloudy, murky, unrecognizable version of our relationship. When I learned to respond with a smile and “Isn’t that interesting” or something equally banal, at least our relationship retained a calm, although thin, veneer. While Michael’s behaviors indicated that everything he thought, said and did were absolutely right, my own behaviors became increasingly foreign to me. The battle I faced with myself about lying to him was one that haunted me day and night for most of the ten-plus years we lived through Alzheimer’s. I lied to him. I hid things from him, denied things and sneaked around. All the things you associate with being untrustworthy and disloyal were suddenly the way I was conducting myself. I could not reconcile it with the person I thought I was. I had just hidden the mail before he could get to it, and it didn’t matter that it was because I had found unpaid bills forgotten and stuffed between chair cushions. I put money from a joint account into a single one in my name, and it didn’t matter that it was because I had found a statement that showed all our savings gone for no apparent reason. I opened a new joint account with limited funds and sneaked the new checks into his usual checkbook holder and hid the former ones. The lies continued. I had been with him in his accountant’s office recently when she had remarked that he ought to close up his business that was only costing him money and “go fishing.” After that, realizing that I needed a Power of Attorney to protect our finances, I had one prepared. The problem with that was that Michael’s current stage of Alzheimer’s made him question with suspicion any suggestion or activity that was the slightest bit unusual. Would he assign his power of attorney to me? I seriously doubted it and spent anxious days trying to find a solution. Deciding I needed another opinion, I called his business accountant, Sharon, and asked if she thought I needed Michael’s power of attorney. “Of course you do,” she replied. “I’ve been worried for some time that you didn’t have it. I’ve mentioned it to Mike but he doesn’t think it’s necessary. You’re both going to end up with nothing if you don’t take control.” With my heart pounding and heavy as I listened to her, I said, “I’ve had one drawn up, but I don’t know how I’ll get him to sign it.” “He’s coming in for his monthly appointment next Monday at 11:00. If you come and bring the Power of Attorney with you, I’ll take care of the persuading, we’ll have it witnessed, and I’ll notarize it.” She was confident and assured. I wasn’t, but I knew it was probably my best chance. Michael had worked with Sharon for many years and trusted her implicitly. On Monday, I mentioned that I thought I’d meet him at Sharon’s for his 11:00 meeting and talk about how to manage things if he decided to retire. He did not respond. I let him start out fifteen minutes before me, which was about 7:30 a.m., then drove the forty-five minutes to the small town suburb where his office, and Sharon’s, were located. I saw his car at his office and parked where I could watch it without being seen. I felt like a thief stalking my prey. Here I was, spying on my husband. I just knew that he was going to try to see Sharon and be finished with his meeting before I could ever get there, not wanting me to talk with his accountant. Adrenalin was surging through me as I tried to reconcile my fears with my conscience. I hated being here; I was angry with Michael; I hated this disease that had made us not trust each other and was thoroughly disgusted with this life of lies. If I had looked in the mirror at that moment, I wouldn’t have known who I was and the mirror probably would have shattered. [Michael drove to Sharon’s at 9:00 a.m.; I followed, my heart quaking. Sharon explained the benefit of Michael giving me permission to write checks and call her if there were questions about something if he were on a fishing trip at our vacation home on the NC Outer Banks. He signed the Power of Attorney.] Once I got out of the vicinity, I pulled into a parking lot and sat there shaking uncontrollably and trying to breathe. My duplicity, my not trusting him and my sheer audacity were ripping my heart to pieces. The fabric of my character seemed to unravel, leaving nothing worthy behind. This time it was not a shattered mirror; I was shattered. Learning to live with myself had become as hard as living with Michael’s Alzheimer’s disease. It was a relief to be able to handle business with the proper legal authority, which restored equanimity about my actions. There are even times, in retrospect, that I feel a glimmer of pride that I actually did all those things that seemed to be uncompromisingly disloyal. They were measures necessary for the safety of our lives.