Breaking Down Barriers

Caregiving is more than physical care; it’s opening the world to your loved one

Article Highlights:
  • As a mother and caregiver, Debbie Button’s goal was to open the world to a quality life for her son with spinal muscular atrophy, breaking down barriers whenever possible.  
  • Button found that using her digital camera to involve her son in planning daily meals led to other photographic opportunities to take him beyond his room and beyond the house.
by Debbie Button on October 1, 2012 - 9:30am

QUEST Vol. 19, No. 4

“What do you want to eat for dinner?” “I don’t know. What do we have?”

This very common question and response is undoubtedly heard in many households on a daily basis. Whoever does the shopping and cooking has a pretty good idea what’s in the kitchen cabinets but, otherwise, each person generally goes and stares into the cabinets or refrigerator searching for a reply. Sometimes you’ll even catch someone staring into the refrigerator as if some new food will magically appear.

At some point as my son Joe (age 24) and I were repeating this exact conversation, he informed me that his response would always be the same since he was never a part of the shopping or cooking.

Diagnosed at 1 year old with type 1 spinal muscular atrophy (SMA), Joe utilized his wheelchair for mobility while he was younger but, as his health deteriorated, he needed to remain flat on his back in bed. Before that moment, I guess I’d never thought about the functions of daily living that were beyond Joe’s line of vision.

This prompted me to get my creative juices flowing to remedy the situation.

Beyond the bedroom

I picked up my digital camera and started taking pictures of the contents of the cabinets and refrigerator. Perhaps the cabinets wouldn’t always contain the same contents, but Joe was now able to ask which cereals or soups we had on hand.

I then encouraged Joe to assist me in creating my menus for the week and the resulting grocery list. This served a few purposes. Joe was able to  request foods that suited his swallowing needs, and he would know which foods were in the kitchen for that week.

Joe routinely told me that eating did not hold a very important place in his day. He found it a waste of time and energy. Therefore, I needed to use whatever strategy I could to encourage Joe to consume extra calories. His assistance with my meal planning seemed to encourage his interest in meal time. He even began suggesting ingredient swaps in his favorite soups and casseroles.

I enlisted Joe to be my taste tester. Whenever I was making a bowl of potato salad, egg salad, etc., I would get a teaspoon of the mixture and ask Joe to taste it for me. He would suggest whether more salt was needed, etc. As a result, at mealtime, he would know that we had this item ready to be served and eaten. I think interest in eating may be cultivated by suggesting the food item before meal time. Have you ever had just one Hershey Kiss? Doesn’t it just make your mouth water for another? The same concept applies here. It was overwhelming to place an entire plate of food before Joe when he had no appetite.

Beyond the kitchen

Joe Button

It never occurred to me that Joe would be so interested in the workings of the kitchen. Even though I enjoy preparing food for my family, I must admit sometimes it becomes a chore and help is always accepted with a smile. Joe was in charge of preparing the homemade rolls when his health would allow him to accompany me in the kitchen. With immaculately clean hands, he would pinch off pieces of already-prepared bread dough and roll them into balls, which would then be placed into greased muffin tins. He felt proud to be a part of this preparation for our family to enjoy. Despite the profound weakness in Joe’s body, there was always a way for him to participate. And we were making memories that would last forever.

After seeing the success of the kitchen idea, I went room by room and took photos. I didn’t take the time to straighten or clean first. I just started snapping away. I was so grateful to have a digital camera as Joe and I were able to review the photos immediately on his bedside computer. Even though I must admit I don’t like taking photos of my messy house, Joe and I laughed when he saw some cluttered or chaotic space. He then understood why I closed the door on certain rooms when we got company! Even the unoccupied storage areas of the basement and garage hold fascination for those unable to view it for themselves.

I had now solved the dilemma of unseen spaces on a small scale. Joe was able to have some knowledge of the food in our kitchen, as well as a glimpse into rooms difficult to maneuver in his wheelchair.

Beyond the house

I continued to survey Joe’s environment to see where his familiarity was limited. Since my parents lived in a two-story home, Joe had never seen the rooms on the second level of their home. This was the house where I grew up. I wanted to share these memories with Joe. I talked to my mother and grandmother, and we mapped out a plan for a video tour of our homes.

Armed with my camera, I knocked on my mother’s back door. She opened the door and invited me into her kitchen as I filmed. My mom talked about living in this 100-year-old house, how she and Dad had moved there with their 1-year old son (my older brother) and later welcomed two daughters into this home. As we talked, we moved slowly from room to room. Mom pointed out loved ones in framed photographs on the wall and told about collected items here and there on side tables. Making our way upstairs into the bedrooms, we showed Joe the bedroom I shared with my sister when we were young.

Debbie Button

I repeated this video tour in my grandmother’s home and lastly in my own home. I now have a treasured item of family history since I have lost my mother and grandmother, as well as my son. It is so nice to hear their voices as they move about and talk of their homes.

As a mother and caregiver, my goal was to open the world of a quality life to my son and break down barriers whenever possible. Understanding that this disease may possibly steal years from the length of his life, I was firm in my belief that quality is far superior to quantity.

I had no power over the number of years, but the joy of every day was in my ability to create exciting solutions.

Freelance writer Debbie Button lives in Jarrettsville, Md., with her husband, Robert. Joe passed away April 10, 2008. The Buttons have two other adult children and a grandson. Debbie has written a cookbook for people with swallowing difficulties called I Can Eat That!, available for $15 at debbiebutton.com/home, or (410) 879- 7717; or by writing 2748 Sharon Road, Jarrettsville, MD 21084. Debbie invites comments and other sharing.

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