My 80-year-old mother has Alzheimer’s, a brain disease that causes a slow decline in memory, thinking and reasoning skills. We started noticing early signs of dementia in her about six years ago. It has not been an easy journey for our family, and it has been different for all of us. This is my perspective on how the changes affected my mom and the people around her that love her.
As the Alzheimer’s tunneled deeper into my mom’s brain, the changes became obvious. She was still able to carry on a conversation and act normally in many ways, but she had become childlike and dependent.
A couple of times, my dad had to leave on a trip, and Mom came to stay with me while he was gone; it became too hard for her to stay home alone, and I was concerned for her safety. During her stays, she followed me around the house, asking to help, wanting to do something useful. She was restless, looking for something to do.
To keep her occupied, we worked together on albums with pictures from her childhood and early years of marriage. She still remembered the people and places from long ago. We separated the pictures into piles, sorting them by family and year. As I was taping them down and writing the names and dates she told me, she picked up a pile and started going through it again. After I moved it away from her, she picked up another one. When I wasn’t looking, she started pulling out the pictures she didn’t like and putting them in the trash. I tried to explain that I wanted all of them, but she couldn’t understand why. I scrambled to get the pictures into the book before she undid all our work.
She worked with me in the kitchen, too, happy to do dishes and other tasks, as long as I only gave her one at a time. If there was more than one step, she lost track. She has always loved to iron, so I set her up with the ironing board, iron and the Niagara Spray Starch that she likes, and gathered every shirt I could find that could be pressed. She ironed happily for a long time.
It reminded me of doing projects with a toddler. So funny and sweet, but because it was my mother, so heart-breaking.
In groups, she smiled and looked pleasant, but I could tell she wasn’t sure what was going on. Something changed in her eyes; even in pictures, they looked distant and flat. We had a 50th birthday party for my sister at our house, and my mom said to me several times, “Judy, is this your house?” She stopped one of my daughters during the party and said, “Who is this party for?”
Her senses began to betray her too. When we were out to lunch at a local barbecue place, she was convinced that something was burning, even though my dad and I assured her that we did not smell anything. Food tasted and smelled strange or had no flavor at all.
She complained of an almost constant headache, but the doctors could find no physical cause. It dogged her day and night. Sometimes when I asked her about it, she would say it was quiet. It must have felt like a banging, a disorienting din. Eating hard foods gave her some relief; she told me that the “crunch, crunch, crunch” helped.
My mom knew something was happening, but she did not understood what it was. I’m afraid she thought that it was her fault, and that she needed to try harder to think better, as if she could will herself out of her cobwebby confusion. She spent a lot of time agonizing over why she couldn’t think right, and why this would happen to her now when she was supposed to be enjoying her Golden Years with Dad. I don’t think she ever believed that her mind was being stolen away by a disease.
I wish we could have stayed in this relatively easy phase longer. Alzheimer’s is progressive, but there is no real timeline. Changes can come quickly or slowly; it’s impossible to gauge where we are in the process. We only know that it will get worse.
I knew changes were coming again when my mom’s anxiety began to grow, pushing almost every other thought out. Fear, suspicion and guilt turned most conversations into desperate pleas for help. She started using a different voice, high and quavering. Even her faith couldn’t break through the neural pathways blocked and crusted with dementia. False thoughts flitted across her consciousness to torment her, like the twinges of restless legs that make the sufferer twitch and keep moving, unable to rest.
She seemed to shrink. She became so thin; she stopped eating normal meals, preferring candy and ice cream, and then only little bites. Her thoughts seemed shrunken too, down to the bare bones: Help me. Don’t leave me. I’m sorry I was so bad. I’m sorry I hurt you so much.
When she couldn’t make calls anymore, we decided to end her phone service. I didn’t get around to actually cancelling it right away, though, and one afternoon I was walking though Safeway and my phone rang. The screen said “Mom”–a caller ID I never thought I’d see again. I answered it, expecting to hear my Dad’s voice, using her phone for some reason. But it was my mom’s voice I heard, not the little scared voice, but her normal voice.
–Is this Judy Elizabeth Sunde? I mean Hanawalt! Of course I know it’s Hanawalt!
Yes! Hi Mom! How are you?
–I’m doing fine. Just wanted to hear your voice. It makes me feel better. How are all the kids? How is Steve?
Our conversation went on for a few more minutes. I kept asking her questions, not wanting to hang up, trying to stay suspended in this odd, rare moment of lucidity. I wished this could be reality instead of the new one I was trying to accept.
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