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ALS – The Caregivers

I do not think many people can truly appreciate what it is like to be confined to a wheelchair every day, all day.   Our bodies are created to move through and react to the environment around us. All of us experience pains and aches in our bodies, and often this is a sign that we are not moving our bodies enough. When we feel discomfort, our body automatically responds by shifting into a new position. When we sleep at night, our bodies are regularly shifting and turning, always trying to maintain the highest level of comfort.

As ALS took away Veronique’s ability to flex her own muscles, she became more and more reliant on caregivers to help her maintain the most comfortable position. Even though her motorised wheelchair cost more than a small car, we were still frustrated almost daily in our attempts to adjust and readjust the headrest and the armrests in order to account for her changing needs. My training in massage had not included working with a client in a wheelchair, but I discovered what worked for her and with daily range-of-motion exercises, we were able to keep her limbs more flexible. When she could no longer go to the acupuncturist, he came to her. Once a week, she was visited by ‘Reiki Rick’ and the whole house went silent while he brought her into a deeply healing and meditative state.

A task as simple as washing her hair was suddenly complicated as an extra person was needed in order to support her head while keeping the breathing mask pressed to her face. When she wanted her hair cut, her stylist agreed to make a house call. Ditto for the pedicure.

The most time consuming activity by far was the process of getting Veronique out of bed in the morning and preparing her for sleep again in the evening. There were transfers between the wheelchair and the commode by way of a hoist and sling. This was often the most frustrating and tiring part of the day for Veronique as she was feeling the most vulnerable and helpless. Activities which you and I do without thinking and normally take just a few minutes now regularly took hours to complete. For the caregivers involved this was the most physically and mentally demanding part of the day. When all was done and she was lying in her bed, a lot of attention was paid to her position. The mask would be adjusted several times, her hips shifted, knees raised, legs straightened, arms placed just so. Comfort was a top priority since her body would not change position until morning.

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