Advice for Loved Ones and Caregivers
The below content has been reviewed by Rachel Dolhun, MD, the Foundation's on-staff movement disorder specialist.
Diagnosis of Parkinson's disease has a ripple effect, radiating from an individual to his or her family and friends. When hearing of a loved one's diagnosis, many questions may come to mind. How will this impact our relationship, our future -- my life?
Building a care partnership
Sharing in your loved one's journey with Parkinson's disease (PD), means integrating the diagnosis together into your lives, adapting your routine and supporting him or her as the disease progresses -- essentially, establishing a care partnership.
This can sometimes be challenging; from learning about the disease and how best to help your loved one, to remembering to also care for yourself. There are steps you can take to help adjust to your new role as a care partner while maintaining a healthy and supportive relationship with your loved one.
We asked caregivers in our community for their advice to provide a roadmap for filling this role.
HOW CAN I HELP MANAGE MY LOVED ONE'S CARE?
Become an integral part of your loved one's experience with Parkinson's by offering to help share the responsibilities associated with the disease including doctor appointments, therapy sessions, medication administration, household duties or any activity that's more difficult to perform because of Parkinson's disease. People with Parkinson's will desire different levels of assistance and some wish to maintain as much independence as possible. You won't know if a person wants help unless you ask but then respect their response. Communication about these issues is key to understanding how best to help your loved one.
Ask your loved one if you can attend doctor's visits. Care partners play a major role on the team of people treating Parkinson's. You offer an outside view of how your loved one has been doing in the interim since the last visit. You may also recognize new symptoms or subtle changes that the person experiencing Parkinson's doesn't. For example, your loved one's mood or behaviors may have changed and he or she may be more withdrawn. These could be signs of depression, which is a clinical symptom of PD and is treatable with medication. A person with Parkinson's might otherwise dismiss this as a reaction to the diagnosis of PD or not even mention it to the doctor. You may also have noticed that your loved one's speech has become softer or more monotone. This may impact your ability to communicate and therefore your relationship. Speech therapists can prescribe exercises to improve voice control.
You and your loved one can decide together on management options offered and with two sets of ears tuning in, you can both be clear on the treatment plan.
As a caregiver, keeping track of all the details associated with medical care can be overwhelming. Here are some tips to help:
- Stay organized with a calendar that you can take on doctor visits. Note doctor and therapy appointments, start and stop dates of medicines, and any side effects you notice.
- Keep a list of all doctors' phone numbers and addresses in case of an emergency. Keep a separate and updated list of all prescription medications, their dosages and instructions and prescribing provider. Note allergies or medication intolerances as well.
- Familiarize yourself with the terms of your loved one's medical insurance. Know what services, including prescription medication coverage and therapy session benefits, are included. Talk with your physician about the long-term needs of your loved one, and make sure his or her current medical plan will meet those needs. Engage the services of a social worker if you need help navigating these issues.
- Know your rights in terms of disability coverage, family leave and elder rights.
If possible, consult a movement disorder specialist , a neurologist specially trained in Parkinson's disease and other movement disorders. Before appointments, prepare a list of your questions for the doctor.
Particularly in the early days after diagnosis, your list may include questions on:
- long-term prognosis
- symptoms you need to be aware of -- both motor and non-motor
- how existing medical conditions may affect the health of your loved one
- medicine protocol
- non-medical treatments
- clinical studies that need you or your loved one with Parkinson's
You do not need special medical training to help with any but the most advanced stages of the disease. Most caregivers are primarily called on to aid with daily tasks that may become difficult or impossible for someone with Parkinson's, and to provide ongoing emotional support. One exception: if Parkinson's causes trouble swallowing and therefore increases the risk of choking, knowing the Heimlich maneuver can be life-saving.
HOW WILL PARKINSON'S AFFECT MY RELATIONSHIP?
Parkinson's disease can place stress on a marriage or relationship. The fatigue and motor difficulties of the disease can cause changes in your partner's appearance and influence their contribution to household chores. Cognitive and mood changes may make it hard to initiate and follow through on everyday tasks, which can be frustrating for both of you.
Effective communication is vital for the long-term health of your marriage. As with any other important development that affects the lives of two people who are close, Parkinson's disease should be discussed openly and honestly. Do not consider your own concerns as a caregiver less important.
If your loved one chooses not to reveal his or her diagnosis right away, you may feel uncomfortable being less than truthful in response to questions from others. There is no simple answer of how best to support your partner in this situation. Discuss your concerns with your partner but also listen to their reasoning. Consider the implications of sharing a diagnosis on your social interactions and your loved one's career.
If you feel comfortable doing so, visit a counselor or therapist together or individually to work through the many changes and emotions you are experiencing and to learn how you can preserve and grow your relationship.
HOW CAN I CARE FOR MYSELF?
Caring for a person with a chronic illness full-time can be overwhelming. Put together a list of friends and family members whom you trust and can call upon to relieve you for a few hours or in case of an emergency. Consider seeking outside, professional help for in-home assistance if you can afford it.
Don't forget your own interests and your life outside of Parkinson's disease. Schedule regular social activities and time for yourself. Go out with friends, enjoy a physical activity independently or take classes that interest you. For Parkinson's patients who require constant care, check out local programs that will take care of them on a temporary basis (sometimes called "respite care"). This will allow you the time to seek the support and rest that you need.
Caregivers may react to Parkinson's diagnosis with denial, fear or anger. Seeing your loved one change, particularly if mood or behavior are altered, can be hard to not take personally. Talking openly about what you are experiencing, and clearly communicating on a day-to-day basis, are critical for both the Parkinson's patient and the caregiver.
Support groups offer the opportunity to share experiences and information with empathetic ears. There are groups for Parkinson's patients and their loved ones to attend together and separate groups just for caregivers. Keep in mind that each group has a different character and you may have to try several before finding a right fit. If there are no support groups in your area that you like, consider starting your own. Online forums can also be a source of support.
Remember that Parkinson's disease and its course are different for everyone. How you and your loved one navigate the disease is dependent on your individual relationship and personalities. Over time you will be able to come to an agreement on what constitutes the most effective, supportive and beneficial care partnership for you both.
ADDITIONAL RESOURCES FOR LOVED ONES AND CAREGIVERS
Our community on social media has recommended the below resources.
Articles, comprehensive checklists and links to key resources designed for family caregivers.
An information source providing education, peer support, and resources.
A social network for persons dealing with grief, death and major loss.
A site for people with neurological and brain disorders to find support and advice.
An advocacy group for Parkinson's disease.
A nonprofit coalition of organizations focused on advancing family caregiving through research, innovation and advocacy.
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You, Your Loved One and Parkinson's Disease
Hear advice from Lonnie Ali, wife of Muhammad Ali, and experts from The Michael J. Fox Foundation in our free guide.