Each month, a member of the Chapter’s experienced care team answers three questions about ALS and their role in supporting ALS families.
National Nurses Week is coming up soon. How do Chapter nurses like yourself provide guidance and support for people with ALS and their caregivers?
Chapter nurses try to support people with ALS and their loved ones by providing education about ALS and its treatment. This can include physical care of the person with ALS, education about medications, equipment, and supplies. We also address and provide education about disease progression along with on-going health care wishes. Our primary goal is to support the person with ALS and their loved ones throughout the course of the disease. And as nurses, we attempt to do so with both honesty and kindness.
April is Stress Awareness Month. How does stress impact the well-being of someone with ALS and what tools does the Chapter provide to help people deal with stress?
Life is stressful if you are a human being; it is particularly stressful for those who are ill, and for those caring for a person who is ill. The Chapter nurses acknowledge this reality and do what we can to help. This includes providing emotional support to people with ALS and their loved ones, encouraging folks to attend our Chapter Resource/Support groups, and sometimes recommending further support by seeing a psychotherapist and/or psychiatrist. In addition, we educate about other potential sources of support including stress-reduction programs and apps and Mindfulness programs.
National Volunteer Week is in April. As the person in charge of the Visiting Volunteer Program, how have you seen the Visiting Volunteer Program grow and benefit people with ALS?
The Chapter’s Visiting Volunteer (VV) program is in its 21st year. we have had hundreds of matches over the years. Our VV’s are simply wonderful folks who are connected to the Chapter and want to be of help to a person with ALS and their loved ones. They do so by providing companionship, emotional support and at times, errands and some light help in the home. Our VV’s often become friends with the person they are assigned to, and/or the person’s family. It has been my privilege to be the coordinator of this program in the Chapter’s South-Central counties.