|Jodi O’Donnell Ames
If you have ALS, so does your family. That is to say, ALS is a devastating disease which affects everyone involved. While living with ALS is difficult, living with ALS without the support of family and friends would be even more challenging.
When my late husband Kevin started needing more assistance, my sister-in-law Keiren stepped in to help us with an amazing book she found called Share the Care (How to Organize a Group to Care for Someone who is Seriously Ill) by Cappy Capossela and Sheila Warnock.
Keiren read the book and then invited interested family and friends to attend a "Share the Care" meeting in our home.
The book has everything caregivers need. It includes the steps involved in setting up a meeting, ways to get and stay organized, suggestions for jobs and all the forms that are needed to run a Share the Care group.
The following is from the Share the Care website:
Share the Care is a detailed step-by-step model that shows you how to:
- create a unique caregiver "family" from friends, relatives, neighbors, co-workers and acquaintances;
- answer the question all your concerned neighbors and friends have asked ("How can I help?");
- hold a meeting that will turn a group of ordinary people into a powerful caregiver team;
- organize the team using a simple, easy-to-follow system and a workbook guide that guarantees every job will get done and no one person will have too much to do;
- discover the hidden talents within the group, make the most of their resources, cope with group issues and stay together in the face of adversity;
- navigate through the medical maze of doctors, hospitals, treatments, medications and much, much more;
- deal with your own emotional issues and fears while helping someone who is facing their own mortality; and
- make caregiving a meaningful, loving experience and replace stress, fear and loneliness with teamwork, courage and friendship.
Whether you're a burned-out caregiver or a first-time caregiver, you can benefit from a system that lets you share responsibilities, have a support network among the caregivers and make a real difference in someone's life.
Establishing the Share the Care program in my home was such a blessing. Our group consisted of more than 30 volunteers, and they did everything from building ramps to picking up prescriptions.
One of the best parts about the program is that there is a questionnaire for volunteers. The questionnaire helps to find the right job for each volunteer by assigning a job which is comfortable and convenient to him or her. Some volunteers like to provide hands-on care while others would rather make phone calls or run errands. This system allows volunteers to be committed for longer periods of time because their roles are created based on their interests and needs.
Kevin was much taller and bigger than I am, so there was a need for physical help. We had volunteers on a daily basis that specifically helped with transferring Kevin from his wheelchair to his hospital bed. We had a nurse help with physical therapy once our insurance covered program ran out. These tasks were an enormous help to both Kevin and me.
Some of the volunteers were family members. Some were friends and others were friends of friends! We also had volunteers who worked from the peripheral and helped with errands. Members did yard work, provided meals and even helped with paper work.
But the best gift Share the Care gave to me personally was the gift of time. The program allowed me to spend more quality time with Kevin. I knew my time with him was limited, and I didn’t want to waste it going grocery shopping or running to the cleaners. I wanted to be with him as much as possible.
While a caregiver to Kevin, I was also the mother of a young child. I often felt torn between caring for Kevin and our daughter Alina. I made the decision to ask our Share the Care group to help with Alina’s extracurricular activities. Volunteers came through, and their help brought me great joy. As Kevin’s disease progressed and he needed a feeding tube and ventilator, his social life diminished. He was less interested in leaving the comforts of our home to tackle the poorly handicapped-accessible world.
But Alina did not miss a trip to Great Adventure because her cousins invited her. Alina did not miss her school play because her grandmother took her. While it was difficult for me to miss some of Alina’s events, Kevin’s illness was my priority at the time, and she had so much fun with her family and friends that she rarely missed us.
If you or your family has not yet implemented the Share the Care program into your journey with ALS, please consider doing so. If you do not have a large group of family or friends, reach out further to those in your community who can help. Know that you will not only be receiving care, you will be changing lives! People who enter your home to help will leave feeling inspired.
"It is one of the most beautiful compensations of this life that you cannot sincerely try to help another without helping yourself.” — Ralph Waldo Emerson
About the Author
I have raised three children who learned about ALS as young children. My late husband, Kevin Gerard O'Donnell, heroically battled ALS from 1995 until his death in 2001. He was funny, handsome, loving and brave. Our daughter Alina was almost 3 when Kevin was diagnosed.
In 2003, I married Warren Ames and became the mother of two children, Nora and Adam, who were then 11 and 7. Nora and Adam lost their biological mother to ALS in 2000, when they were 9 and 6.
ALS has united my family in hope and in love. We live each day with hope for tomorrow and want to help other families who, like us, know ALS all too well. Not a day goes by without remembering Kevin and Tina and the lessons they have given us. We formed Hope Loves Company in their memories, as a way to provide emotional and educational support to children of ALS patients.
Tina, a child counselor when she was diagnosed with ALS, wrote the book "What Did You Learn Today?" to help younger children come to grips with the changes brought on by ALS. The book is available on the Hope Loves Company website under "Resources," or on amazon.com.
Follow my ALS blog at joames.wordpress.com/2013/01/03/as-my-als-journey-and-family-expands.
"If it were not for hopes, the heart would break." — Thomas Fuller