November is National Family Caregivers Month
What is a caregiver?
Ellen Belle, Director of Patient Services at Colorado Neurological Institute, explains, “A caregiver is the person who manages or assists in managing activities of daily living for a patient, both in the home and in the community. They can be family, friends, neighbors or paid individuals. Caregiving requires good communication skills, a desire to be of service, as well as an ability to be needed or not needed on a day to day basis. A good sense of humor is always useful, as is the desire to do the best for the patient and be sensitive to needs.”
“Caregiving is a critical part of healthcare for many with a neurological condition. However, for a variety of reasons, it is often difficult for physicians and other healthcare providers to become involved in, and optimize, the caregiving. CNI’s staff and services may facilitate caregiving in a way that complements conventional healthcare and ultimately improves the overall care for those with neurological diseases,” says Dr. Allen Bowling, a Colorado Neurological Institute Associate Physician.
Phil and Gerry Dickinson
A neurological condition like Multiple Sclerosis (MS) not only takes a toll on the individual facing the disease, it also greatly impacts the caregiver. Every patient-caregiver relationship involves a different level of dependence, but most caregivers experience challenges. For Gerry Dickinson, 71, his greatest challenge is not being able to do more for his wife, Phil Dickinson, 66. He wishes he could understand her pain. He wishes he could offer her a cure.
Up until 36 years ago, Phil and Gerry Dickinson didn’t know anything about MS. When she was 30, she was standing in the kitchen and her leg started to go completely numb. Immediately, she knew something was wrong.
At first, the doctors could not pinpoint her condition. A neurosurgeon speculated that she had a spinal tumor. She did not learn of this possibility until after undergoing tests. By process of elimination, her medical team diagnosed her with MS. In reply to her news, she asked, “What’s that?” Neither Phil nor Gerry knew how this disease would affect their lives.
Fortunately, Phil was able to manage her MS with a healthy diet and consistent exercise. For 25 years, her disease seemed to enter dormancy. Then, six years ago, the symptoms returned.
From the beginning, Gerry offered his shoulder to lean on. He attended her appointments at Colorado Neurological Institute (CNI) and encouraged her to keep up with her therapy. Despite her continuous numbness and fatigue, she keeps going with the help of her caring husband.
“They do lots of things together. She wanted to be able to walk to their favorite breakfast restaurant. Therapy has helped her achieve that goal,” says Dottie Tarvestad, a Physical Therapist at CNI.
The couple has also taken CNI’s class, Take Action with Your Chronic Disease. This is a class that was developed by Stanford University to teach patients and their care partners how to be proactive in living with their situation. Trained leaders teach coping strategies such as facing difficult emotions, communicating with health care professionals, healthy eating and exercise, relaxation techniques and proactively managing one’s life.
“The chronic disease class taught me to make a plan for what I want to accomplish. I also learned that I’m not as bad off as I sometimes think I am,” she says.
“I felt bad that others didn’t have a spouse or support with them in the class,” he says.
Phil also participated in a Nordic Walking Class, provided by CNI and the National MS Society Colorado-Wyoming Chapter. This class is suggested for people dealing with balance issues. Brisk walking is safe and effective in countering our often sedentary lifestyle.
“I enjoyed meeting new people. The poles offered me stability,” she says
When asked about Gerry, Phil’s expression is full of happiness and gratitude. When she was first diagnosed, she told him to go. She didn’t want him to have to endure what was to come.
“I am never leaving. ‘For better or worse. In sickness and health.’ I meant those vows. That’s how I was raised. I’ll always be there,” he says.
“He is the poster guy for caregivers. He is just awesome. He may not understand how I feel, but he is always so supportive,” she says.
Colorado Neurological Institute and the National Multiple Sclerosis Colorado-Wyoming Chapter have multiple resources for patients and caregivers facing MS. If you are a patient or caregiver looking for somewhere to turn, please know that you are not alone. We are here to help.