Alpha-1 Caregiver steps up to lead support group
Barb Speers, the wife of a lung-affected Alpha, knows firsthand the stressful role of an Alpha-1 caregiver. Ed Speers, Barb’s husband, was diagnosed with Alpha-1 in 1997. He is on oxygen full time.
When an online email list for Alpha-1 caregivers came to a stop, Speers and some others wanted to continue keeping in touch. This is what led to Alpha-1 CARE. Speers is the founder of the Alpha-1 CARE email list, as well as a moderator. She also recruited her fellow moderators Carol Hosley from Pine City, NY, and Larry Tipper from Wilmington, NC.
Barb Speers, founder of Alpha-1 Care
“We are here to support one another during those times and trials that only another caregiver can fully appreciate and understand,” she says. “Unless someone has carried the burden of continually being aware of everything that can and does affect your loved one 24 hours a day, seven days a week, for years, is very hard to truly understand how they feel.”
Caregivers need to be reminded to just take a step back once in a while and focus on their own personal needs, Speers says. “Even if it is only for a short period of time, or in the most minimal way, it is tough for us to let go. As caregivers, those that we care for are continually on our minds. Every decision we make, both big and small, is influenced by the health, well being and ability or limitations of our loved one.”
What is the best thing about a caregivers group?
“For me, the greatest relief was when I met another caregiver who willingly said call me if you need to,” says Speers. “Just the knowledge that there was someone I could call when the going got rough, or life seemed to get larger than I could handle, was a relief. Someone understood. Someone cared about me. I did not have to justify my feelings, my thoughts, my fears, or my tears. It was OK. I was going to be OK.”
A principal she learned that helps her get through the hard times is, “Emotions are neither right nor wrong. They simply exist. How we deal with them is what is important.”
Another lesson: “There are times that each of us is in need of support and times that we are the one giving needed support.”
A turning point in Speers’ attitude about Alpha-1 came when she met a 77-year-old Alpha who was still living an active life and managing his own infusions. “From that point on, it was clear that there is life with Alpha-1,” she says.
The late Sue Garrison, a fellow Canadian, encouraged Speers to attend a gathering of Alpha-1 patients and caregivers that Sue was organizing. Sue and Barb originally met through an email list and became friends. In October of 2001, Barb and Ed attended the gathering in Toronto and volunteered to sit on the steering committee to establish a Canadian national organization.
Barb and Ed became founding members of Alpha-1 Canada and served on its board of directors until 2007. It was during the long process of establishing Alpha-1 Canada that Barb became increasingly aware of the need for caregiver support and began the online support group known as Alpha-1 CARE.
Contact the Alpha-1 caregivers group online at http://health.groups.yahoo.com/group/Alpha-1CARE/
or
http://www.alpha1.org/support/caregivers.php
