The Muhammad Ali Parkinson Center at Barrow Neurological Institute in Phoenix, AZ, a Parkinson's Foundation Center of Excellence, shares its namesake's passion for helping the underserved. The center recognizes that caregivers are often the unsung heroes when it comes to Parkinson's care and so MAPC is committed to caring for caregivers. Offering a variety of caregiver-focused classes, the center always keeps the caregiver in mind and works to provide tools that can make life easier for them.
In its caregiver arsenal, the center provides a six-week program that was developed at Stanford University called Powerful Tools for Caregivers (PTC), offered three times a year. Cultivated over several years of pilot testing, the program is proven to reduce stress and improve caregiver health. In the 10 years Powerful Tools for Caregivers has been offered, class materials (like the Caregiver Helpbook) have reached and helped more than 80,000 caregivers.
The course is taught by trained center staff and enables caregivers to develop their own self-care tools that:
- Reduce personal stress
- Help change negative self-talk
- Communicate needs to family members and healthcare providers
- Develop a process for making tough caregiving decisions
Program materials focus on the current and ongoing caregiver principles to help caregivers thrive, even while caring for their loved one. Each class has a maximum of just 12 participants, which helps the group easily get to know each other and form a bond. "I liked the comradery and appreciated hearing others share their stories," an anonymous participant said.
"I am better able to cope with my stress," one participant wrote to Nancy Bivins, LMSW, from the Muhammad Ali Parkinson Center, who manages the program. "I learned the benefit of using 'I' messages, instead of 'you' messages when communicating with my husband."
Another caregiver-driven program developed by the center is Caregiver Boot Camp. One of the goals of this half-day workshop is to teach good body mechanics when physically helping someone. The loved one living with Parkinson's is also encouraged to attend so that caregivers can practice hands-on activities of daily living techniques. Topics covered in the program include: assisting someone out of a chair or wheelchair, tub and toilet transfers, getting in and out of the car, ambulation, swallowing, adaptive equipment, eating, among other practical topics. The class also covers local Parkinson's and caregiver resources. As with all center classes, participants are encouraged to bring up any topic of interest and the instructor covers it for the entire group.
In September 2016, MAPC became a pilot site for PD SELF (Self-Efficacy Learning Forum), an innovative Parkinson's Foundation program that teaches people with Parkinson's and caregivers an in-depth understanding of how to manage Parkinson's with confidence. This approach has been proven to be effective in helping people with PD develop the motivation and skills to take charge of their Parkinson's. Classes are taught by a person living with Parkinson's and a health care professional who both undergo training. Each class runs nearly three hours long and meets once a month over the course of nine months (to read an in-depth article about this approach read our Centers of Excellence Series: Strive to Thrive).
The Muhammad Ali Parkinson Center still fights to do more for caregivers. "We are currently meeting with a focus group of male caregivers to gain insight into the kinds of programs that would appeal specifically to them," Nancy said. Men are under-represented in the center's caregiver-focused programs, accounting for only 10 percent of attendees at the center's most recent Caregiver Workshop, but the center is working to change that. "We are committed to developing a program that men will find helpful and worth their time," Nancy said. (Learn more about the foundation's scientific grant to study how gender affects caregiver support and the Women and PD initiative.)
"The Muhammad Ali Parkinson Center's goal is to offer programs for all caregivers that provide the encouragement and support they need as they care for their loved one throughout all stages of Parkinson's and life," Nancy said.
Advice for caregivers by Nancy Bivins, LMSW, from the Muhammad Ali Parkinson Center:
- Right now, set time aside for yourself on your calendar. The key is to schedule your personal time with the same commitment you would a medical appointment. Make plans to do something you enjoy. If nothing comes to mind, try something new. Knowing what energizes and refreshes you is critical for all caregivers.
- Just because you can do something, doesn't make it the best course of action.Since responsibilities are shared in a partnership it is reasonable to expect that when one partner is can't continue doing something, the other will take on that task. However, caregivers can't take on every job. A task may be necessary, even critical, but the caregiver may not be the best choice. Try hiring someone, asking family or friends for help, lowering the standard (mow every 2 weeks) or eliminating the job altogether (someone else can host the Fourth of July party).
- Rest is not a reward only to be enjoyed when everything is done. Rest is vital to your health. Research shows that sleep is more important to your well-being than diet and exercise, but it is the first to suffer. When your schedule is demanding, don't sacrifice sleep. If you are up throughout the night, nap the next day. If the needs through the night are significant, some caregivers hire at-home overnight help. Additional help can ensure that your loved one is safe and that their needs are met, allowing you to keep a more regular sleeping schedule.
- Keep socially active! People who maintain friendships are less likely to experience sadness, loneliness, low self-esteem and problems with eating and sleeping. At one time, you may have had a rich social network, but friends and family move away, pursue other interests and have their own health issues. Work on maintaining your friendships. Since social isolation is a gradual process, you could be isolating yourself and not notice. Social isolation involves you and your loved one. Although you have each other, are you socializing with other people? Invite friends or family over, accept invitations or try a new class.
- Communicate regularly with your loved one about your health, concerns, thoughts and perspectives. Try not to let PD become the focus of every conversation. A healthy balance between giving and receiving is just that, a healthy balance. It is healthy for your loved one to reciprocate the interest you have in his or her well-being.
- Develop a relationship with a social worker who knows Parkinson's. Resource lists are helpful, but cannot substitute a person who can talk to you and assist you and your loved one and develop a plan that best suits the both of you. There is not a standard Parkinson's plan. Your course and decisions are unique. There will be changes along the way, but having a knowledgeable social worker on your side is invaluable.
- At the end of each day, reflect and write down three positive things that happened. Research shows that this simple exercise has a positive effect on a person's overall well-being. However, people often do not stick with it because it is so simple. It works. Write things like: someone held the door for you or you tried yoga for the first time. You can also include things that didn't happen like: it didn't rain during my outing.
- Enjoy life. Live it to the fullest. Attendees at the Muhammad Ali Parkinson Center's exercise classes frequently shout the following with gusto: "I may have Parkinson's, but it doesn't have me!"