This includes Cherry Zimmerman, care partner to her husband Alan who is a member of the PDF People with Parkinson’s Advisory Council. They reside in Knoxville, TN. We sat down with them to understand more about their PD partnership and the needs of Parkinson’s care partners.
Q. How have you both coped with the diagnosis of Parkinson’s?
CZ: At the time that Alan was diagnosed, I wasn’t that familiar with Parkinson’s. So far, I have coped well, but I also know that Alan’s disease has not progressed as far as it has for others. He finds joy from being involved in a lot of Parkinson’s related activities. Sometimes, I worry he “spreads himself too thin,” but I want to support him in being active while he can be.
AZ: I have read that many people with Parkinson’s cope by going through periods of the five stages of grief as laid out by Elizabeth Kubler Ross. I jumped straight to acceptance and I “cope by doing.” I read everything I can on Parkinson’s and look for ways to make a difference, including as a member of PDF’s People with Parkinson’s Advisory Council. I attend four support groups in the Knoxville area and am president of one. I started a Facebook group, “Knox Area Parkinson’s Club.” Cherry and I participate in research studies and go to NYC once a year for PPAC meetings. My motto is “what I can, while I can.”
Q. What are the top challenges and issues facing care partners in Parkinson’s?
CZ: Having spent a lot of time around other PD care partners, and spoken to many of them about their needs, I feel the biggest issue care partners face is a lack of time to care for themselves. There are so many issues that we deal with on a daily basis — i.e., medication regimens, doctor appointments, speech and physical therapy and management of medication side effects. We need to have knowledge of symptoms, medications, diet, and mobility/physical therapies. In this regard, caregiver “burnout” is a serious issue. Many spouses (especially women) think they have to do it all, and hesitate to ask for help. Having understanding family and friends helps a lot, but not everyone has those support systems. Neighbors and church groups can be invaluable. In short, medical and psychosocial issues affect not only the person with Parkinson’s, but also the care partner needing more attention.
AZ: As Cherry notes, a PD care partner has to assume many roles such as cheerleader and expert on PD. Where he or she was once part of a team, the care partner now has to assume responsibilities that both people used to share. The care partner often subordinates his or her own needs and this can lead to burnout. That is why the care partner needs breaks. Every case of PD and care partner are different. But for some, support groups can help care partners share ideas and gain comfort.
Q. Cherry, you attend a caregiver support group. Do you recommend this for others?
CZ: I meet other caregivers at a restaurant once a month for brunch. It is a casual setting and everyone is free to discuss whatever they want. We vent and get frustrations out of our system. We laugh a lot. Whatever is discussed in regards to our loved ones living with PD stays there. We discuss a range of topics, including current symptoms their loved one is facing, health insurance coverage, medication side effects and how to find home health care providers. Yes, I recommend it to others. Sharing experiences can be very helpful. If there is not a group in a person’s community, there are Facebook groups where caregivers share information. These include “Caregivers of PD Support Group” and “Parkinson’s Support Group for families.” I highly recommend these two groups. Care partners can also start a group. Remember, it doesn’t have to be a formal group, it can be a social setting.
Q. Last month, as part of the Community Choice Research Awards, you two chose ‘caregiver needs’ as a priority for research. Why is that so important to you both?
CZ: Much focus in the community has been put on Parkinson’s research, deservedly so. That is how it has to be in order to possibly find a cure. At the same time, caregivers who live with the effects of Parkinson’s 24/7 are often left out. We deal with frustration, anger, sometimes isolation, loneliness and feelings of loss, often on our own. If we could dedicate some research into understanding care partner needs and finding solutions, maybe we could make life a little easier for care partners and help them better care for themselves and their loved ones.
AZ: Care partners are unsung heroes. They don’t get enough credit for what they do. They are constantly looking for ways to better care for their loved ones with PD. The work never gets easier; in fact, because PD is neurodegenerative, it gets harder. The care partner perseveres selflessly and often subordinates his or her own needs to those of the person with PD.
Alan Zimmerman is a member of the PDF People with Parkinson’s Advisory Council. See his bio here. He and Cherry reside in Knoxville, TN.
To find more resources for caregivers, visit www.pdf.org/caregivers_month. For support and answers about Parkinson’s, including links to caregiver support groups in your community (where available), contact the PDF HelpLine at (800) 457-6676 or firstname.lastname@example.org.