This year, and every year, the Fixel Institute joins the Parkinson’s Foundation in recognizing our care partners for the National Family Caregivers Month.
We want to show our thanks and appreciation for those who give of themselves to ensure that their loved one living with Parkinson’s disease (PD) is healthy and living a happy life.
Care partners and caregivers deserve to be recognized and celebrated.
Being a care partner for a loved one with Parkinson’s disease can be an emotional roller coaster. To help you along the way, the Parkinson’s Foundation and other programs across the country have pulled together resources to ensure that you have the tools that you need to stay healthy and feel supported.
Read the Thank You from our Fixel Family Here.
Interview with a Local PD Caregiver Hero
Please tell me about who you are and your role as a care partner.
- “Star” is the wife of a person living with Parkinson’s disease (PD) and Parkinson’s disease dementia for 10 years.
- “Star” became a full-time care partner two years ago when prior to that her husband was independent for many years and did not require assistance. “Star” notes that she felt as if the need for her role as a care partner came suddenly after her husband experienced a urinary tract infection (UTI) while on vacation.
What is one of the more difficult parts of being a care partner?
- “Star” recognizes that one of the more challenging aspects of being a care partner is how her role has changed from spouse and partner to caregiver, case manager and nurse. She notes that where roles used to be shared around the house, the relationship has shifted and changed, and her roles and responsibilities have increased to taking care of his medical needs, chauffeuring him to appointments and managing his daily care has her husband’s PD has progressed. However, there are times when her husband’s PD symptoms ebbs and flows, therefore, her duties as a care partner wax and wane.
- Caregiving has many challenges but during the time of the COVID pandemic, care partnering has been particularly challenging due to limiting the external support resources and concerns about safety outside of the house.
How do you take care of yourself?
- “Star” states that finding time support herself and #selfcaregive is challenging. However, she understands the particular importance of self-care to herself, her marriage and to her husband’s PD. Currently, she is working on seeking respite care through an adult day program that her husband can participate in for exercise and social engagement a few days a week. This will allow her to have some time to do things that are important to her, such as get her hair done, run errands and spend time with her friends to ensure her own self-care while ensuring that her husband is staying engaged in activities that will support his PD needs. She also seeks support from her family when possible. Although asking for help from others is difficult, “Star” has found that seeking help from loved ones is important.
What advice that you would give to others?
- “Don’t take anything for granted.”
- “You know your loved one the best” and don’t be afraid for fight for those things at medical appointments if needed. “What you know is worth something.”
- Know the difference between progression of PD versus just symptoms of other illnesses such as UTIs or respiratory infections. Early care is important for illnesses that can be treated, so making sure that you are watching for signs of changes that might not be related to PD.
- If you hit a dead end, don’t give up…there might be a different route to take. “Hang in there.”
- Have a consistent multidisciplinary team on board with you to support your PD journey. Having a primary care physician who can work as an “orchestra leader” is critical to ensuring seeking the success of referrals to providers and tests. Additionally, having a neurologist/movement disorders specialist, rehabilitation team and even a patient advocate for cases if a hospitalization occurs.
Where do you go for resources?
- “Star” utilizes a variety of resources to help her on her care partner journey. She finds that staying engaged and informed about PD ensures that her husband receives the best care possible. PD programs such as the Parkinson’s Foundation and the Michael J. Fox Foundation have reputable resources that have been valuable for her along the way. Additionally, she has found support in Facebook groups, peer chats and support groups through talking to others who are experiencing the same journey. Lastly, “Star” notes that it is critical to do her research through peer reviewed research and scientific resources to ensure that she has the most up-to-date facts about medication and treatment for her husband.
Fixel Support
Fixel Institute Patients & Caregivers
C.A.R.E.S. Program
C.A.R.E.S (Caregivers Accessing Resources for Emotional Support) is free, 1-on-1 counseling to caregivers of patients in the Fixel Institute who are currently experiencing emotional and mental strain while caring for a loved one. Can be provided by Zoom online.To schedule this FREE service, call our office at 352.733.2410 or email Jana Unislawksi.
Fixel Institute Patients and Caregivers
Fixel Caregiver Support Groups
Join the Fixel Institute for their monthly caregiver meeting that occurs on the first Friday of every month and PWP/caregiver group on the third Friday of every month. Currently, sessions are being held virtually.
Parkinson’s Foundation Helpline
Need immediate support? Staffed by nurses, social workers and therapists, the free Helpline is available to answer caregiver questions and concerns. Just call 1-800-473-4636.
Parkinson’s CareGiver Resources
Practicing Self-care
Mindful Monday
Mindful Resilience for Care Partners
Parkinson’s Foundation Mindfulness Monday program offers this brief, free course on staying resilience as a care partner.
Self-Compassion for Caregivers
Caring for others can be challenging and overwhelming. As a caregiver, it is important to remember to show self-compassion and grace to yourself when you feel challenged in your role.
Comedy
You Might Be A Caregiver If…
Join the AARP, Peter Rosenberger and Jeff Foxworthy for a short comedy video on being a caregiver.
Michael J. Fox Foundation
You, Your Loved One and Parkinson’s Disease
Download this guidebook from Lonnie Ali, wife of Muhammad Ali. This guide provides information on maintaining friendship, taking care of yourself and more.
Caregiver Bill of Rights
Many caregivers can lose themselves and what brings them joy if they are not mindful of their own needs. Here’s some universal considerations for all caregivers…
15 Actionable Ways to Practice Self-Care
Taking into account the importance and tough job that a caregiver has, it is also critical that a caregiver takes care of themselves. The Parkinson Foundation provides 15 ways to practice self-care in this blog below.
Finding Support
Support Groups
Access for a list of Parkinson’s Support Groups and Caregiver Support Groups across Florida.
PD Conversations
Join online discussion groups where you can connect with others who are sharing similar experiences to you and your loved one.
2021 Care Partner Summit
Care partners have an enormous and often underappreciated job. Join the Parkinson Foundation At the 2021 Care Partner Summit to learn valuable tools for caregiving and networking.
Children as Care Partners
Mommy has PD…But Its Ok
Educating your children about your diagnosis of PD can be challenging. However, the APDA hopes to make this easier with this cartoon.
Caregiver Assessments
Caregiverstress.com
Caregiver Distress Assessment Tool
Use this Family Caregiver Distress Assessment to identify the things that might make caregiving more challenging for you, and what you can do to address those challenges.
Parkinson’s Foundation
Self-Assessment Tool for Caregivers
Take this self-assessment quiz to see which areas of your life may need attention.