AUGUST 24, 1993
5 AM
My respite has come to an end. Last Friday I had my gall bladder removed and spent one night in a nice peaceful hospital room. Missy and Katherine stayed with O. J. until David’s family arrived then they brought him home. I wonder if they yet realize how fast he is losing it. It helped to have David there to amuse him and keep in occupied for the weekend.
Sometimes I think the hardest part of Alzheimer’s is the feeling of isolation, of not making contact with OJ as we talk. Today I woke at 4:30 to the sound of running water and the strong smell of unine. I turned the light on, and found OJ still lying on his side in bed peeing on the carpet.
When he saw me in the light, he said, “ I want to go home. I’m tired of this Goddamned place” His defiant reaction triggered the same in me. I reached under his side of the bed not 5 inches from the spreading puddle on the floor and pulled out the plastic urinal placed there for emergencies, that he had used many times. The flowered bed skirt was dripping and so were the sheets, the mattress, and the mattress bad.
So much for the post surgery restriction of my not lifting 5 pounds for 2 weeks. The sheets, pillow cases, and mattress pad had to be replaced with fresh linens. While he watched I sprayed with a disinfectant and sponged dry the mattress and the carpet. He sat at the end of the bed pouting like a defiantly guilty little boy, daring me to accuse him of wrongdoing.
He had to be helped out of bed and cleaned up and dressed in fresh pajamas, then led to the guest bedroom to sleep for the rest of the night.
I gathered his pajamas, the wet bedclothes, and mattress pad took them to the washing machine. Soap and disinfectant would make them fresh again, but what would help the straining stitches in my side? I’ll probably regret this tomorrow.
After I put the clothes in the washer and turned it on, I made a pot of coffee and went back to bed. As I lay there with my heart pounding with anger an frustration, self pity whispered, “You can’t even recover in peace and quiet. He doesn’t care that you are hurting. In fact he’s doing things not because he can’t control himself, but out of petulance that you haven’t been waiting on him the last few days.”
Too distraught to rest, I got up and through the dark to the lighted kitchen, poured a cup of coffee and turned on the computer.Better to take my anger out in pounding the keys than to smolder or try to pretend that it doesn’t matter. When he wakens I’ll be calm again.
“Why am I so mad?” I know that dementia is a physical and mental disability and that OJ is reacting at the level of his mental state, but his actions appear deliberate and spiteful as if he is saying ”you have not been caring for me these last few days, so I’m going to force you to clean up after me.”
Over my head hangs the knowledge that things will never be better for him and most likely become increasingly worse as he no longer relates to me as a wife, but as a bossy caregiver. There’s no appreciation of meals prepared or care given, just increasing criticism of life in general and frustration about his limitations.
OJ can be gentle and charmingly defenseless round others. When he can be persuaded to shower and get dressed, he can appear perfectly normal. Greeting old friends in public he appears unchanged from 20 years ago except for the wheelchair. When asked about his health he complains about his knee hurting. When they leave he asks, “Who was that? Do I know them?”
The day is coming when he probably will no longer be able to go out in public, as his sense of propriety fades. I dread that both for his sake and mine. Short trips out to eat or look around make him temporarily more alert and optimistic. Longer trips exhaust him and require days of rest to recover.
People often remarked on my patience as a teacher, yet anxiety and weariness use up patience quickly. I do not like the bossy, pushy woman I am becoming. The image is incompatible with my self image. I hate the thought of acting a martyr and I’m certainly not a saint. I resent the role thrust upon me as caregiver, nurse, housekeeper, groundskeeper, treasurer and scapegoat for all the things that cause OJ frustration.
Obviously the time OJ and I have together is limited, but already much of our relationship is lost. We can’t talk as two adults, or flirt, or share our feelings. To OJ I am the all powerful mother figure who has taken away his truck, his guns, and his freedom. The more he is dependent on me to protect and care for him, the stronger his frustration and resentment toward me.
He wants to go “home”. Back to the time he was strong and confident and in charge. He wants to get in his truck and drive and spend his own money and plow with his tractor. He doesn't realize he doesn't know the value of money in his hand, can't tell time on a clock, but can read the numbers, and can’t find his way to the bathroom 10 feet away.
My heart aches for him and I try to soften the realities as much as possible. He looks at me wistfully and wonders what is happening, knowing that things once were different, though he is not sure how.
