When you encounter a loved one in his or her incipient stages of dementia, while you may be annoyed at that person’s occasional behavior, you may not notice that behavior as signs of dementia or Alzheimer’s. And as the mind subtly deteriorates, you, as most caregivers do, will fall backwards into caring for this person; you won’t realize you need help until you are in deep and you won’t know until you begin hiring how very long it takes to find good help, whether in-home or in a nursing home. By this time your own health is in jeopardy. Often, even with the best intentions, you will become frustrated and angry with the person for whom you are caring.
One evening my mother said, “I forgot how to use the microwave.” One night soon after, she fell while washing the dinner dishes. She was standing at the sink and she just fell. I heard the thud. I ran down the back stairs to the kitchen. I found her crawling around on the floor, grasping at the seat of a wooden chair, trying to get up. “What happened? How did you fall?” I asked. She didn’t know. One moment she was standing, the next she was not.
After that, she grew gradually less steady on her feet. She was a petite woman, five feet tall, weighing 100 pounds, and she had become unbalanced and weak. She began falling a lot. On the floor, I’d talk to her and prop her against a wall. She was unresponsive, her eyes open, blank. I feared she would not come out of it. Yet, after about a minute she regained her sensibilities and I ran and got neighbors to help pick her up. One day, she climbed out of the tub after showering and fell, wedged in an awkward position between the tub and the toilet, her legs folded under her so she couldn’t get up. Cheryl, her next-door neighbor, wasn’t home, but her brother was. He came and lifted her up compassionately, all the while looking away.
It took a good friend to tell me, “You need help. You really need to get help.” I don’t know what I had been thinking. Probably nothing.
Looking back, I don’t know how I did it all myself for so long. It took two years to get help, and even then, it wasn’t enough. I thoroughly researched all options available to persons with low income. My advice – start seeking support before you think you need to.
I remember my Nana crying when my mother put her in a nursing home after her stroke. “Don’t leave me. Oh, don’t leave me,” Nana cried, as we walked away.
I wanted to keep my mother at home, therefore, and all the state could offer was five hours a week respite care. This went on for two years, until finally federal and state funding allocations altered, and, by then, we qualified for hospice, after their declining our previous two applications.
Finally, after a decade of suffering from dementia, my mother passed peacefully at home in April 2012, at 97, with her hospice nurse, chaplain and me by her side, holding her hand.
Samantha Mozart has published two books: “Begins the Night Music: A Dementia Caregiver’s Journal, Volume I” and “To What Green Altar: A Dementia Caregiver’s Journal, Volume II.” Ms. Mozart is a newspaper and magazine feature stories writer, essayist, editor, award-winning poet and writing coach. She writes a blog, “The Scheherazade Chronicles” (http://thescheherazadechronicles.org), and gives presentations to senior centers and caregivers groups.
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