Think about how difficult life becomes when you can’t remember how to begin the first step of so many activities.
By Tom & Karen Brenner
Alzheimer's Reading Room
What if you couldn’t remember how to button your shirt? When you stop and analyze this activity, it can become quite involved. There are many steps to buttoning a shirt.
What would the first one be?
Interestingly, when we ask people who don’t have Alzheimer’s to tell us how they would begin a simple task, such as buttoning a shirt, making a peanut butter and jelly sandwich, load a washing machine, we always, always, get different answers from different people. Everyone has their own way of buttoning a shirt, making a sandwich and loading a washer.
For instance, what do you pick up first when you start to make a PB and J sandwich?
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Visualize this in your mind: is it the bread, the knife, the jar of peanut butter?
Our point is that even the most simple, mundane, daily task can seem difficult and overwhelming if you can’t remember how to start, if you no longer know where to begin. This failure to initiate, this inability to begin a task is the point where many people with Alzheimer’s begin to give up. They don’t know where to start, so they don’t start. It is our job as caregivers to help them find a way to begin again.
Betty was a person who found that she could no longer remember how to begin the simple tasks of daily living. Because of this failure of executive function, she began to scale back her life and her activities.
Betty still lived in the home where she had raised her five children. She had loved to cook and have the family over for big Sunday dinners. Her daughters were shocked when their mother called them up and told them that she didn’t want them coming over on Sundays anymore, it was all too much for her.
They could hear the emotion, the near panic in their mother’s voice. As time went on, their mother became more withdrawn, less active, and began to sleep through much of the day, staying awake most of the night.
The family was finally able to get Betty to the doctor, where they were not surprised to hear that their mother was dealing with dementia, probably Alzheimer’s.
She was still able to live in her own home, but she just wasn’t ‘mom’ anymore. As time went on, the family noticed that Betty was losing weight and seemed tired all of the time. She was becoming argumentative, refused company and would often not answer her phone. At this time, Betty’s daughters were becoming very worried about their mother and her health in general. One of the daughters finally decided to have an honest talk with her mother and discuss future plans.
As they sat across the kitchen table from each other, Betty’s daughter realized how cold and sterile the kitchen seemed. This room had been the heart of the house, with something always bubbling on the stove or baking in the oven. Betty’s daughter began by asking her mother the big question,
“Mom, what do you want us to do? You can’t live here anymore. You know that you aren’t doing well. Do you want to live with one of us, or take turns living with some of us, or do you want to go into an assisted living apartment? We want you to help us make this decision. We want you to tell us what you want.”
Betty seemed to understand what her daughter was saying to her, but instead of answering any of the life changing questions put before her, Betty simply said,
“I want to know where my things are.”
Betty’s daughter was dumbfounded. She had no idea what her mother was talking about.
Betty began to cry,
“I don’t know where any of my things are. Where are my pots and pans? Where are my spoons?”Betty’s daughter looked around the kitchen, at the gleaming, empty counter tops, the closed cabinets, the shut drawers. Suddenly, she realized that Betty didn’t know where her cooking things were because she couldn’t see them. Betty didn’t remember where anything was and she didn’t remember how to open the cabinets and the drawers to find the things she needed.
With her daughter by her side, they began to open drawers, fling open cabinets. Betty looked lovingly at her newly found things, but her daughter knew that she would soon forget where everything was. To help give her mother some immediate relief, Betty’s daughter made signs for all of the cabinets and drawers, listing the tools, dishes, cups, pots and pans found behind each closed cabinet, each shut drawer. Everyone knew that this was just a short term aid for their mother while they researched a more lasting solution to their mother’s needs.
While they took their mother to visit assisted living places, they also wrote out recipe cards for her to follow so that she could once again make some of her favorite meals. All of the daughters pitched in, making cards with the steps for washing clothes, making coffee, getting dressed. They wrote out directions step by step and taped the cards in the appropriate places.
Their mother began to gain weight, to become more social, to seem more like her old self.
The family knew that taping up cards with the steps to simple tasks was not the long term answer their mother needed, but they saw that their mother was regaining some of her independence and some of the joy in her life.
She could once again make a visitor a cup of coffee or bake cookies for her grandchildren.
These everyday tasks gave Betty great happiness and gave her family real joy.
They still had the large decisions to make as a family, but in the meantime, the family had helped Betty find a way to continue to do those things that made her such a special person.
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