Partners in Parkinson’s (partnersinparkinsons.org) is a joint effort between Michael J. Fox Foundation and AbbVie, a pharmaceutical company. They have occasional webinars on topics related to Parkinson’s Disease (PD). In a webinar last month, two PD caregivers and two PD healthcare professionals spoke about “building and balancing your role as a Parkinson’s caregiver.” The discussion was moderated by a retired family physician who has Parkinson’s.
Though all of the participants in the webinar were dealing with Parkinson’s Disease, the content of the webinar applies to all caregivers, regardless of disorder. And most of the content applies to everyone — whether you are giving care or receiving care.
Registration is required (and free) to access the webinar recording and slides:
Brain Support Network volunteer Denise Dagan listened to the one-hour webinar and shared notes.
Denise says that the conversation covered four areas:
“Caregiver considerations” = wearing many hats as a caregiver, taking a team approach as care partners, dealing with the emotional roller coaster, and seeking support.
“Strategies for transition” = the challenges of transitioning a part of your identity from a healthy person to a person with PD – and – from a spouse to a care partner.
“Balancing individual needs and shared goals” = keeping perspective between focusing on PD management and both care partners continuing to participate in activities they enjoy.
“Advocating for better health” = advocating for your family member with PD in the doctor’s office, in the PD community (example – fundraising for a cure), and at the state and federal level in public health policy.
Her notes are below.
Notes by Denise Dagan, Brain Support Network volunteer
Building and Balancing Your Role as a Parkinson’s Caregiver
Partners in Parkinson’s Webinar
November 8, 2017
The role of caregiver is often one of many an individual may have; caregivers, or care partners, can include children, spouses, friends and extended family or involve several individuals. Many people prefer the term care partner because it implies a choice to care and that the relationship is reciprocal, while caregiver implies the burden of care has been thrust upon you.
The transition to care partner may lead to unexpected challenges and impact existing relationships.
Caregivers may need support from friends, family or the community; access to resources can help ease transition.
Getting a diagnosis can be a relief, especially after a long term of unexplained symptoms. After diagnosis learning about Parkinson’s and how to live with it can finally begin, although not all families will pursue information immediately, especially if medication is effectively compensating for symptoms.
It can be an emotional roller coaster, especially right after diagnosis. A therapist can be helpful, especially to guide families through fear of the unknown and encourage communication and combat depression.
The panel recommends joining a support group to learn how others cope with Parkinson’s, although you can’t compare yourself directly to others because every person’s symptoms, underlying health, lifestyle, etc. do vary.
Health care policies may impact both caregivers and patients; caregivers can help advocate and be an additional voice when speaking to health care providers, weighing in on the obstacles, struggles and wins to make the most of those interactions in person and on the phone.
Caregivers can amplify the patient voice toward better care and access.
STRATEGIES FOR TRANSITION
Access available resources to learn about PD. Find a movement disorder specialist. Movement disorder specialist finder at www.partnersinparkinsons.org.
Engage with allied health specialists (physical, occupational and speech therapists).
The panel agreed that most health care professionals are more than willing to take time to answer concerning questions that will reduce the inquirer’s anxiety or frustration, so find that patient person on your health care team who has time to return your phone calls or email and reach out to them when you have a question. Reducing your anxiety or frustration by reaching out to that person will keep you well.
Connect with the community through support groups, online forums, events, etc. Education, social connections with an understanding community, even activism can help combat depression.
Empower patients to make decisions.
Explore ways you work as individuals to optimize how you can work together. One panelist found his wife’s significant improvement immediately following DBS made them realize how much he was missing his healthy wife. They made changes then to stay connected and to share their story to help others see that PD doesn’t have to drive a wedge between you as a couple.
Engage with a therapist or practice meditation. People’s fears are all over the place, like loss of mobility, loss of speech, loss of job, etc. The best way to face your fears is to share them and make an action plan to put off those losses as long as possible. Reduce anxiety by getting all your financial, medical and legal documents in place well ahead of when they will be needed. For some people taking action can help ease depression.
Do activities that bring enjoyment to you and your caregiver. It is very easy for time in the day to be overwhelmed by medication timing, doctor appointments, exercise routines, etc., completely sidelining needs of the caregiver OR the lifestyle you both used to enjoy. One panelist got good advice; as soon as you are diagnosed write down who you both are and the things you both enjoy and refer back to it often, especially when either of you are feeling overwhelmed by managing PD.
Live in the moment.
BALANCING INDIVIDUAL NEEDS AND SHARED GOALS
Both people in the caregiver-patient relationship share daily goals, but both also have needs as individuals. Encourage independence in the person with PD.
Sometimes effort is needed when facing uncertainty. We need to learn to manage uncertainly/anxiety independently and together. Sometimes input from a therapist, clergy, etc. is really helpful with this.
Caregivers should schedule time for themselves to meet other priorities; self-care is critical when caring for others. Panelists agree that there doesn’t need to be a ’schedule’ for self-care, unless there is a regular activity they enjoy, but without a regularly scheduled activity, it is easy to let daily PD care derail self care. Don’t let that happen.
Reach out for respite care from social services, church, family and/or friends to stay with your family member allowing the caregiver to have a break and/or stay involved with activities they love.
People with PD should focus on setting and managing personal goals.
Caregivers and people with PD have other personal roles (i.e., sibling, child or friend) that require just as much attention.
It is important to find balance when integrating the caregiver role into daily life.
– Communicate. Address issues, and feelings as they arise.
ADVOCATING FOR BETTER HEALTH
Health care policies may impact both caregivers and patients.
The federal government is the largest funder of PD research; approves new PD drugs to ensure they are safe and effective and helps increase access to services patients need. The panel encouraged everyone to educate themselves and participate in fundraisers and clinical trials.
Caregivers can learn more about the public policies that affect people with PD and call legislators to amplify the voice of Parkinson’s patients. The panel encouraged everyone to educate themselves and write their legislators.
Caregivers also can help advocate for more information and better care at doctors’ appointments. Between visits keep notes about things you notice in your family member with PD (increased falling, unstable gait/balance issues, wearing off of meds, etc.).
Use Fox Trial Finder or Clinicaltrials.gov and bring trials you are interested to to your doctor to discuss which you may participate in.
Learn more about public policy and how to take action at michaeljfox.org/policy.
QUESTION AND ANSWER
Q. Thoughts and suggestions for my family member who’s recently diagnosed and quickly agitated/frustrated, but will not see a therapist?
A. First, find out if there is a medical issue contributing to their behavior? Is this behavior a departure from their usual behavior? Be aware of your safety around this behavior and have an exit plan if your family member really goes off the rails. Find someone to talk to as a caregiver, first. Eventually, you may be able to get your family member to talk to them. Try an aggression outlet, like Rock Steady Boxing.
Q. Person with PD has no immediate family support.
A. Be your own advocate. You are not alone. Talk to someone. It can be a church group, neighbor, pastor, friends, other family members. Tell your doctor what you love and implore them to help you be able to keep doing it. Don’t let yourself become isolated.
Q. Importance of reaching out to extended family, friends, etc.
A. The extended PD community can be intense, close, understanding, compassionate relationships because they are dealing with the same symptoms, financial, emotional woes when your non-PD friends and family don’t understand.
Q. How do you deal with friends or family who don’t know how to deal with your PD?
A. This definitely happens. With media exposure more people understand PD is not a death sentence, or they know someone with a PD diagnosis. Talking in casual groups to share information about medications, exercises, diet, etc. in public (at the YMCA, in the grocery store, etc.) helps make people even more comfortable talking with a person with PD. MyParkinsonsTeam is an online chat about PD.
Q. Most important tip for care partners on this journey?
A. Find the right doctor. Movement disorder specialist who’s as up-to-date as possible. Get involved. Move around. Be active. Be sociable. People who ask, am I doing enough? Should I be doing more? There is no doing it ‘right.’ Keep reaching out, be gentle with yourself. Be resilient. Don’t stop looking for better symptoms management. Don’t feel like a pest. Ask about clinical trials. Ask if there’s more you can do. Search for answers until you find one that works for you. Couple can drift apart. Turn toward each other, instead. Communication is paramount. Be more open, honest, vulnerable, committed, invested. Together you are stronger. It can improve your relationship.