When my husband was first diagnosed with ALS, I thought I could ‘do it all’ in terms of caregiving, knowing that the average survival of most people with spinal onset ALS is 3-5 years. It became clear, however, about 18 months into the journey, that doing it all would have done me in. Thanks to the encouragement of a good friend, who knew about the Share the Care model–and with her guidance–we brought Bob’s Brigade together for the first meeting before the extra support was needed.
The hesitation to accept help that preceded the initial Share The Care™ meeting gave way to a feeling of community and shared purpose as the meeting progressed. It became evident that the giving and receiving was a two-way street. Everyone had a chance to share their feelings and expectations, and the feelings expressed at the end of the meeting were overwhelmingly more positive than those expressed at the start. This process was very helpful in increasing Bob’s comfort level with the idea of a Share The Care team.
Over the course of 16 months, the team responded to requests for meals, rides to/from work, social time, overnight respites, and many other tasks, all based on our specific needs at a given time. The team grew from about a dozen to over twenty people; a hired caregiver and Hospice Care also became part of our lives.
In summary, Share The Care is a dynamic, structured process for helping someone with needs. This model of caregiving support worked well within our lifestyle. The contact forms and scheduling structure allowed for an efficient distribution of time and tasks. The closing session, held two months after Bob’s death, provided an opportunity for everyone to reconnect and share something meaningful about the Share The Care experience. So much gratitude was expressed at the closing meeting. I believe that everyone’s lives were enriched through their participation in Bob’s Brigade, and I hope that others will allow themselves the benefits that a Share The Care group provides.