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"Will help to dispel myths about Alzheimer’s and help people who have no experience with the disease." —The Niagara Gazette
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"Get this garbage to the curb tonight," she ordered. They pick up early, before you wake up." Mother jammed a paper towel into the trash barrel.
"Yes, ma'am," I pulled the bin toward the back door.
"Put your shoes on. You can't go outside barefooted."
I ignored the comment and continued trudging.
"Where are your shoes? Didn't I say put on shoes?"
The shrill accusation split my eardrums. I considered screaming back, but what good would it do? We played this game every Monday and Thursday night, fifty-two weeks a year. My mother had come to live with me, and the battle for dominion over the household raged. She often won, since I abhor confrontation.
"Use the slippers by the back door. Don't step outside without them."
A sudden bubble of anger shoved up from my tightened stomach, into my throat, and escaped my lips. "Shut up!" I said.
Stunned, we both stared at each other. I'd never been rude to my mother; it dishonored her. But there it was, bouncing on the airwaves between us. A roar of gut-wrenching words. A pounding from inside my brain which had escaped through my clenched teeth. A vital, necessary warning: shut up.
"I'm sorry, Mother ..." I began.
"Well, who do you think you are?" She turned and huffed offto her bedroom, leaving me holding the trash, barefooted. Guilt surged through me. I considered chasing after her and apologizing again. Then I realized I was alone in the garage. Alone. Just me and the trash. In my bare feet.
I was over fifty, and if I wanted to walk on glass barefooted, I should be able to make that decision! Where did the fine line fall between honoring my mother and allowing her to rule my household? Her comments to my children often targeted their imperfections. In my desire to care for my elderly mother, was I sacrificing their self-esteem? I was getting crushed between the needs of two generations. Alzheimer's gripped the cells of Mother's brain. Bit by bit synapses were failing. Concurrently, my reactions intensified. How would we manage this rocky road together?
I limped, tender-footed, to the curb and leaned the trash can against it. A sudden urge to wail washed over me. Lifting my face to the stars, I cried out, "Father, what do I do?" Part of my heart wanted to hear from my dead dad, part of me wanted a heavenly touch. I waited; the pungent aroma from the trash can mingled with the night breeze. Was this the sum total of my existence? Where does my happiness, my life come in? I had single handedly raised three children and now was parenting again. Unfair, I dared to cry. Unfair!
I recalled the startled look in Mother's glassy eyes as she recoiled from my anger. Unfair. Her loss of life and memory outweighed my loss to the nth degree. Why should I complain: at least I had memories of what we had for dinner.
The silence continued. I waited. No one is guaranteed time. This was my time. This was my life now. Be content.
My heart's anger had surged and now subsided. Would this be the last time? I doubted it. Two people living in the same home would always have friction. Alzheimer's may cause more sparks, but God would be my damper. I smiled at the stars, walked to the house, and wiped my bare toes on the doormat. My feet stung.
Learning to live with this "new" mother has been a challenge. Alzheimer's disease is progressive and irreversible. Simple forgetfulness is not a sign of Alzheimer's. It is more than just misplacing the remote control. Patterns of behavior emerge. Mother couldn't recall the most recent events, whether she'd eaten or who called on the phone. Slips in her speech, a loss of a word became more frequent.
When it became obvious her lack of memory was more than just normal aging, we met with our family doctor. He referred us to a neurologist. Using a few simple memory tests and her history, the doctor gathered enough data for a diagnosis. He prescribed the cognitive memory drug, Aricept. Mother took this expensive drug for four years before switching to a newer drug, Namenda.
I noted a significant difference in her behavior when she began drug therapy. We ran out of the Aricept for two weeks, and I could see the confusion return. She was more agitated and forgetful. When we resumed the medication, she calmed down. Neither of these drugs caused an improvement in her memory, but they have slowed the progression of the disease.
Learning to live with someone who has Alzheimer's is a challenge. Several key factors help the care giver cope. First, accept that things will not improve. The parent, the spouse you once knew has been invaded by an alien force. Take time to assess this information and grieve, then move on. Dwelling on what was is not healthy. At this point, you must accept the situation and learn to deal with it.
With my teenage children, this meant teaching them about their grandmother. I wanted them to honor her and understand how different she had become. But the now is their reality, the woman they know: harsh, confused, scared, full of conflicting emotions. We walk a fine line at times, but love prevails. Their impatience has waned as they've learned about the disease. A multi-generational household can work.
Arm yourself with the facts. Find books in the library, talk to the doctor. The Internet abounds with information. The Alzheimer's Association has a variety of booklets, which they will send you. Avail yourself of these resources.
Often, it is important to connect with other care givers in this unique situation. Find local support groups online or in the phone book. Many local organizations even have daycare services where you might take your parent or spouse while you are busy with an errand or appointment.
Caring for the patient in your home requires adaptation. The environment must be "user-friendly" for the elderly. Throw rugs, cords, any impediment for walking must be removed. Safety rails and bath aids should be installed. Often locks on bath and bedroom doors need to be reversed so patients can't lock themselves inside. A wealth of information and "how-to" articles are available online listing common steps to prepare your home and make it safe.
The most difficult preparation for a care giver is mental. Parenting your parent is especially difficult, since the reversal of roles is unnatural. My bare feet didn't bother me, but it triggered the mothering instinct in my mom. She'd cared for me for decades and she remembered that. Arguing or debating any issue with an Alzheimer's patient is fruitless. They no longer have the capacity to reason. Learn early on to acquiesce. It's no longer a fair fight-you lose. You have control of the situation, of course, but the verbal battle over any issue goes to the patient.
Maintain a sense of humor. If you have a good friend or family member who will support you, laugh about some of the incidents in your life. Laughter is good for the soul and cleanses many black moments.
Be flexible. Time doesn't move at the same pace in the patient's life any longer. What used to be a five-minute ride to the beauty shop now seems like a long trip for Mother. Outside of our immediate home environment, the world is a frightening, fast-paced whirl. She is unable to operate the way she did. Remember, they can't remember. It is aggravating to repeat yourself over and over, but they have been robbed of the ability to process the data given to them, to have it remain on their hard drive. Drop the phrase "Remember I just said ..." from your vocabulary.
Take care of your physical, emotional and spiritual needs. There is help available. Check with the local agencies to see if your parent or spouse qualifies for home services. Ask another family member or a friend to sit with them. Carve out some time for yourself. Do not let the disease swallow your life, or you'll be of no use to the patient.
The war against my mother's brain still rages. I ignore many of the words of advice and I give in to my frustration sometimes. But there is underlying love and peace. What I've been given in this care giving experience far outweighs the daily irritations, despite having to wear shoes.
Excerpted from Voices of Alzheimer's Copyright © 2007 by LaChance Publishing. Excerpted by permission.
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