Where Did I Put My Map?
A Little Manual for Caregivers of Alzheimer's Patients
by
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I got up and turned on the light in the hallway and returned to offer him my arm to help him stand up. He pushed my arm away and said, “Get out of my way, I know what I’m doing.” I stepped back as he sat up on the side of the bed and tried to take off his pants. He could not get them off, of course, because he
was sitting on them. He became very frustrated. I told him that it would work better if he could stand up and come into the bathroom with me. He stood up, opened the closet door, and began to pull down his pants in order to urinate in the closet.
I cried out, “Wait, wait, wait until we can get into the bathroom.” I tried to convince him that the closet was not the toilet, but he just kept pushing me away. I suggested that he could follow me into the bathroom and that was the best place to do this. He wouldn’t move. He had his underpants down to mid-thigh and had a tight grip on them. I reached for his arm to lead him out of the closet, and again he pushed my arm away hard and said, “Get out of my way, I know what I’m doing.” I stepped back and said “Please don’t pee in the closet, if you will just follow me I will show you where the bathroom is.” He pushed me again and shouted, “I’ve got to go before I wet my pants, now leave me alone, I know what I’m doing.” And proceeded to step back into the closet. I took a deep breath and said very softly, “If you will come with me, I will show you where the toilet is.” He sighed deeply and replied, “O.K., I’ll go with you, but first I need to pee,” and tugged at his pants again. I took hold of his arm and said, “Boy, this sure is frustrating, I really don’t know what to do.” He looked at me very puzzled and said, “O.K., O.K., I’ll go, but then you have to let me pee.” I led him the six feet or so around the corner to the bathroom door.
As I turned on the light he looked in and said, “Just what do you want me to do for you in here?” I replied, trying not to let my exasperation show, “Just sit down on the toilet and everything will be O.K.”
He stepped into the bathroom and opened the shower door. “That’s not it, please just sit down here on the toilet,” and I patted the seat of the toilet.
He studied the toilet for a moment, and shook his head. “I just can’t do that,” he said.
“Sure you can,” I said, “all you have to do is turn around and sit down right here,” again patting the toilet seat.
He looked into the shower again and said, “But those people in there (pointing into the shower) will steal everything we have and run away.” I tried to reassure him, “Don’t worry, I won’t let them do that, Please sit down here now.”
“No, I just can’t do that.”
“Please sit down here.”
“But I need to pee!”
“O.K., Please sit down here.”
“But I have to have something to sit on.” (As he stood over the toilet.)
“It’s right under you, please sit down.”
“Let me think about it.”
“Please sit down.”
“I don’t think it will fit.”
“Please sit down.”
“I’m going to have to go to the bathroom and pee.”
“O.K., Please sit down here.”
“First I’ll need a towel.”
“Please sit down.”
“Where is my wallet?”
“It is in the bedroom on the dresser, please sit down here now and you can pee.”
“Where are my pants?”
“You have them on, please pull them down and sit down here if you have to pee.”
“I just cannot do this anymore, I’m going to have to sit down right here and pee!”
“Thank you, and thank You, God!”
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About the Book
I cannot even envision the magnitude of the number of families that are trying to cope with
This little manual has been a work-in-progress. It began as my personal resource list and information file. As it grew, I realized that many other people were in the same circumstance as I was. So, I began to collect and organize my information. This is the result, I hope this will be helpful to you in your journey.
someone with Alzheimer’s disease, or with some other form of dementia that interferes with daily living. According to statistics issued by the Administration on Aging, the number of people with limitations to their activities of daily living (ADL) in 1990 was 18.8%. By the year 2040 this number will grow to 21.4%. Already there are too few Long Term Care facilities available. Already there is a huge shortage of nurses. There are too few professional home-care providers as well. The result is that people who opt to keep their loved ones at home instead of an institution find that help is scarce and expensive.
The result is that there is an increasing need for training and support services for family or spouse caregivers. Those who have chosen, or been financially forced, to go this route are largely left to their own devices to discover how to be a good caregiver, and stay alive and healthy themselves.
This manual is intended to be a step-by-step tool for at-home caregivers. There is nothing easy about dealing with Alzheimer’s disease. Statistically, caregivers often die before the patient. Don’t let yourself become a part of that statistic. Try to see the humor in the things that will happen, and share your laughter with your loved one. Learn to put the past in the past, take one thing at a time, prioritize your life to accommodate your present task, and remember Who it is that walks beside you. Find the help that you need, if not here, the bookstore, the internet, the counselors at Long Term Care facilities, friends, family, support groups…keep looking!! I will pray for you.
About the Author
Jude Gann was born and Educated in