Living with ALS: Losing Control

I discovered something about myself today at a very unusual moment. I was on my hands and knees, Magic Eraser in hand, scrubbing my tile stairs that lead to the basement. In all honesty, they hadn't had a good cleaning in years, even a good sweeping in months. So the steps needed to be cleaned, but it was a chore that I kept putting off. The reasons were simple: I had no time, it's not on my to-do list today, I'm too tired, I have to run errands, I'm too busy, I don't feel well, I'm overwhelmed already, hubby doesn't go down there any more so why bother, etc.,

Yet today I found myself on my knees, actually enjoying the years of grime wash away.

I felt satisfied. I felt accomplished. I felt in control.

In control? I don't look at myself as a controlling person. I am competitive and like to win games, but am not a sore loser. Yet, on my knees with sponge in hand, I felt in control of my life and that was very important to me. I would choose when to clean, what to clean, how to clean, even how long to clean!

Control. Something that ALS takes away from a family as well as the person with ALS. This disease controls how long a person is able to walk and to talk and to swallow and eat real food. ALS controls daily schedules with supplemental feedings, medications, bathing, therapies, naps, doctor appointments and travel difficulties. ALS causes stress in relationships and bank accounts and security and energy. ALS causes fear of death, loss, survival and sanity.

People with ALS and their caregivers lose control of their lives when ALS enters the picture. So when my day's plans get cancelled or postponed due to an ALS-related surprise, I evidently grab broom and scrub pad and the house receives a face lift. It doesn't relieve any physical symptoms for me or my husband, but it leaves me feeling like I can face whatever challenges are upcoming with a calmer attitude.

Speaking of the house, ALS also takes away the comfortable, lived in feeling that a home has, replacing it with hospital bed, wheel chair, walker, ventilator, feeding supplies and equipment, etc. To carve out a more calming space, my daughter and I have started to create a Zen Den in the basement, which is where I am now sitting, typing this post while my husband naps. While it's not as fancy as the one in this photo, it is beginning to look very cozy!

Besides the well-known methods to relax and gain control of your life (and emotions), there are as many various activities as there are caregivers. My girlfriend swears by retail therapy, but limits herself to thrift stores. She says it's more of a wandering than a purchasing experience. Again, she feels in control by limiting where she goes and what she decides she might (or might not) purchase.

My daughter has made a list of activities that she tries to complete each day. It's not really a To-Do list as much as it is a "control your stress" list. Here are some of the things she checks off on a daily basis: Read, Yoga, Journal, Walk, Watch funny Videos, Bike/Pilates, etc., She is almost as much a caregiver as I am for Bill. She postponed her college degree specifically to spend the next few years with her dad (and me) while she can. She is an angel who has put her family before all else, working part-time and living at home for now. I am so proud of her, and she needs control in her life just as much as I do.

What do YOU do to gain a little more control in your life? Do you have a place in your home that you can unwind without the constant reminder that your life is controlled by a virulent, emasculating disease that moves slower than a snail? Try to find someone to help with the care of your loved one and start a new hobby or participate in a sport. Check out your local YMCA, Park District or Senior Center for classes (I'm learning German because my sister now lives in Germany and I want to visit some day). Go online to Pinterest or YouTube and learn how to sketch, water color or alter/upcycle items in your home - that's how I learned how to water color!

It's time to get your whip cracking and master some control over your time, your home, your life - even if it only gives you a half hour of blissful satisfaction. It's worth it! Here are some places you can find online to help you find ways to de-stress and recover control:

A Place for Mom Blog

Great ideas and resources for caregivers