Dave, my husband of thirty years, stood in the doorway of my office. He had a look I had never seen before: hurt, sad, bewildered.
With a questioning tilt to his head he said, “The doctor tells me I have Alzheimer’s. You are supposed to call his office and talk to his nurse. Then come with me on my visits from now on.”
Our world shifted. My world shifted.
Over the next few days, fear threatened to overwhelm me. I called my sister Kathy and my best friend Beth imploring, “Share a household with us. You are alone, now I am. We could be company.” My message: “Help!”
No one could make such radical changes to their lives that quickly, so I calmed down and went back to the day-to-day.
The big announcement made little difference in our lives after the initial shock and fear. Days, weeks, months went by. Nothing changed.
Of course he lost his keys, his glasses, the names of his nephews. Don’t we all?
When he sliced the front fender of the car into the fence, I thought, “I could have done that.”
When he backed the truck into the car, smashing the fender against the tire, our loving daughter Kathy said, “Well, the Buick was parked in a different place than usual.”
I ignored that my fine musician husband who played with subtlety, depth, and humor did not pick up his trumpet after that revelation day.
He now mowed the lawn in unusual patterns, never staying on track, jumping from one section to another of our one acre garden, sometimes mowing over flower beds. As my beautiful garden descended into chaos, I replaced my denial with anger.
We had a business, a sheep farm, and a home to manage. It was no longer easy to accept dirty dishes in the cupboards, bleach instead of detergent used in the laundry, the fences left to sag and break.
I began to rage at these things, rage at him. On the day he left the gates open so the rams had access to the ewes, I ran at him and screamed loud enough for all Sam’s Valley to hear, “Look what you’ve done, now we have to catch them -- we don’t want any lambs this year, don’t you listen?” Seven rams -- 350 pounds of wooled muscle on the run, on the hunt for their lady loves: something for me alone to deal with because he cannot follow my directions, no longer understands what my pointing to the gate signifies.
After these occasions, I felt the guilt and my body took the punishment: sleeplessness, bad dreams, and debilitating back pain stored the anger and the guilt as I became increasingly frustrated that I was required to take over more and more of the work and all of the management.
The back pain, the sciatica, was nothing more than a symptom of my discontent, I was punishing myself for the anger I tried unsuccessfully to reject. Ironically because of it, I couldn’t do the myriad of things I had to: my many job and home responsibilities as well as fulfill my obligation to him, the most important being, to care for him, ‘til death do us part, and to remember the mantra of our early marriage days: I will love you forever, no matter what. Waiting on him and cleaning up after him was a painful exercise, one I began to resent more and more. All I wanted to do was lie on the couch reading and have someone wait on me.
During this time I had a dream: we were bound together by elastic tape with metal grabbers clasping the neck of each of our shirts. Bound – I was feeling trapped.
The balloon of my anger burst and evaporated the night he came to bed fully clothed. I asked him to take off his sweater and shirt at least. He said, “No, it keeps me warm.” While I was with him in bed for our usual before-sleep cuddle, I did not want the clothes between his skin and mine, so I said, "Okay, I’ll just get another man."
“Do you want another man?”
“No, I just want you to take your clothes off!”
At that moment I knew how capable I was of hurting him, of rejecting this “new man” that had replaced my husband. I cried with regret. This entire time I had been fighting for patience when what I needed was compassion -- compassion for him, compassion for me.
I had been remembering the past, calling up the special moments, with the regret of knowing nothing like them would come again. Gradually I was able to think about our trip to Paris, our deep conversations until dawn, with fondness – grateful for all of our life together, rather than with bitterness that we would no longer share either those memories or create new ones.
Bit by bit I was able to look at his sweet, vulnerable face and see the little boy who was so dependent on my good graces and care. His once strong and capable body, which sixty years ago was able to clear low hurdles as he dashed through events at a track meet, was now thin, hunched, and hesitant. I began giving him hugs throughout the day as he wandered through the house, not remembering his destination.
At this point I took over all of his chores in order not to bark at him, “No, not that way.”
Just as my anger had dissipated that night in bed, my compassion fully bloomed on our yearly trip to New York to visit our daughter.
The usual easy fun of this annual plane trip was instead replaced by care-giving, cutting roast chicken that was not my own, keeping him from picking up the food with his fingers, adjusting his earphones while trying to direct his attention to the movie screen.
When we arrived in New York, seeing Jennifer blew all my emotions to the surface. My adored younger daughter would share this burden with me for the next week and help refill my well of love which had been drawn down dangerously low.
At the airport, taking Dave to the bathroom was an epiphany of sorts as I realized how nakedly vulnerable he was, and how for five years, my usual strength had been eroded by my conflicting emotions. I will always remember standing by the door of the men’s room to guide him, calling in to see if he was okay. Eventually I could see him by the sinks, unsure. I called in: Wash your hands. He turned and turned. I: “Turn around, to the sink.” I implored a man next to him to help. Of course he did, and helped him with the towel also.
When we had arrived at the bathrooms, there were few people around. Suddenly, the men’s room was full of men. Women were lining up against the wall across the way waiting their turns. I did not look at them but sensed their awareness. A buzz started among the crowd -- they were talking about us. Then the whispering stopped. It had all been explained: This woman is helping her man who cannot help himself.
I leaned against the doorjamb, putting my hand up to shield my face that was crumbling into tears.
Dave came out. We walked down the aisle of women and girls. A woman, dark hair and kind eyes, standing with a young girl, reached out and touched me and said, “You did good.” I smiled.
It took five years after Dave’s diagnosis for me to finally achieve acceptance. Five years of denial, anger, compassion – the necessary stages of grief, perhaps. The word Alzheimer’s is part of the vocabulary of my life now, not to be feared or denied.
Every so often when he says something cogent, I have a flash of hope. My anger surfaces from time to time, but I accept it, and then let it go. Occasionally I wish for even more compassion, more patience, but have grown to accept my humanness as well as his illness. I am grateful the progress of the disease has been relatively slow and a gentle slope rather than a steep cliff so I have been able to move through these stages, give these stages their due, thus know my acceptance of our life as it is now is genuine and indeed, our life is as well.
Bio: Michelle Montgomery and her husband moved from Los Angeles to Southern Oregon where they raise wool sheep on their thirty acre farm. She started writing seriously in 2006, five years after her husband was diagnosed with Alzheimer’s. Her completed memoir, Alzheimer Diary, A Wife’s Journal records how the disease has impacted their lives.