Care partners are strong. They have to be in order to support the person they care for and still manage the various tasks and activities of daily living for themselves and for any others who may rely on them. It is through these strengths that they find the courage to meet the varied needs of the person with Parkinson’s. As the Parkinson’s journey progresses, care partners are called upon to be patient, compassionate, organized, adaptable, resilient, positive, and self-assured, sometimes all in one day!
Parkinson’s is a progressive disease; initially, caregiving may take the form of emotional and spiritual support and only later evolve into physical tasks and facilitation. Remember, it’s never too early to reach out for help, and Parkinson Canada is here to provide a wide range of resources.
Just as the person with Parkinson’s has specific needs, so does their care partner. If you are a care partner, managing your needs will allow you to better manage the health of the one you care for. And, no matter what, your role as a care partner doesn’t erase who you are. If you don’t take care of yourself, however, there is a greater likelihood that you will suffer “caregiver burnout,” a state of physical, emotional, and mental exhaustion that can lead to fatigue, anxiety and depression. It’s important, therefore, that care partners seek help before reaching the point of total exhaustion.
Research on care partner experiences identified some overarching themes, including:
- the need to carry on as usual with their life
- the difficult balancing act between caregiving and care partner needs
- the importance of support in facilitating coping
As they move through the Parkinson’s journey with the person they are caring for, care partners have diverse needs, such as for education and time management in order to understand the symptoms and impact of the disease on everyday life. They also have self-care, health, and respite needs, which are an important part of carrying on with their own lives and balancing the needs of all involved.
As a care partner, you need to build in “you” time into your daily schedule, whether it’s to keep up with your own activities or to go to the gym. Exercise is great for maintaining energy and decreasing tension. Recognizing when you are stressed and needing a time out is also important, as is eating a nutritious diet and getting enough rest and sleep.
Get support to stay strong
As part of setting aside quality time for yourself, think about bringing in outside assistance, whether it’s a family member, friend, or paid worker. Consider engaging the support of a social worker or counselor to guide you to community resources. We urge you to contact Parkinson Canada’s Information and Referral team – they can assist you in your search for resources and make helpful recommendations.
Part of getting the assistance you need may involve taking advantage of the community resources around you. Parkinson Canada trains and oversees a large network of support groups across Canada, including support groups for care partners. Whether you are looking for a nearby community group that meets in person or a regional or national group that meets virtually, we can recommend one. Here, a member of a care partner support group shares her feelings:
“The caregivers support group has given me the lifeline I so desperately needed. I so look forward to each monthly meeting!”
For many care partners, getting the kind of support found in a support group meeting is a good way to develop coping skills and to share your experiences and emotions with others who are on the same path. Some of the benefits of care partner support groups include:
- commonality among members
- education and information
- learning to adjust to diagnosis
- practical techniques and strategies
- safe environment for sharing in confidence
- feelings of understanding
- reduction of stigma
- socialization and friendships
Parkinson’s has been described as a family disease, but in many cases the bulk of responsibility lies with one main care partner, whether they be spouse, child, or friend. It’s a demanding job, and one that many take on willingly without hesitation.
If you’re a care partner, don’t hesitate to reach out to Parkinson Canada for support, whether it is educational or emotional. We can help identify solutions that will improve quality of life for both you and your partner.
As a first step, we recommend that you download our free publication, Care Partnering: Managing Parkinson’s Disease Together.
Learn more here if you’d like to connect to our Information and Referral Team.