Creating A Care Partnerships
Parkinson's disease is a chronic, degenerative neurological disorder that affects 1 in 100 people over age 60. While the average age at onset is 60, people have been diagnosed as young as 18.
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.
- How can I help manage my loved one's care
- How will Parkinson's affect my relationship?
- How can I care for myself?
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. 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Parkinson's doesn't. For example, your loved one's mood or behaviors may have changed and he or she may be more withdrawn.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
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 the household. Cognitive and mood changes may make it hard to initiate and follow through on everyday tasks, which can be frustrating for both of you. 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 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 in case of an emergency. 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.
Consider seeking outside help. Many caregivers must continue to work part-time or full-time jobs while caring for loved ones. CareOne Senior Care provides in-home assistance to ensure safety, independence and continued quality of life. Our world class caregivers offer family caregivers a much-needed break. We offer companion care, helping to complete activities of daily life, transportation services, and much more.
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. The Michigan Parkinson’s Foundation’s website offers an interactive map to help you find a support group in your area that meets your needs. 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.
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