The participation and support of family members and friends is critical for the successful care of people living with dystonia. However, supporting someone with a disorder like dystonia can take a toll on the main caregiver too, and family members as well.
A Caregiver’s Duties can Include:
• Providing support and encouragement
• Providing prescribed medications and pain relief
• Helping manage symptoms and side effects
• Coordinating medical appointments and treatments
• Assisting with meals and personal needs
• Helping with household chores
• Handling medical paperwork, including insurance
Despite the challenges, caring for someone suffering from dystonia is a very fulfilling role benefitting you and your loved ones in many ways. Caring for your loved one with dystonia can greatly improve their quality of life, demonstrate how committed you are to providing as much help and support as you can, and provide an opportunity for you to develop a stronger, closer relationship.
Going Beyond Duties
• Remain open to a patients’ feelings and opinions
• Accept a patient’s limitations
• Include a patient in activities they enjoy and look for ways to encourage involvement
• Learn how to provide proper physical care
• Make time to chat about your own needs and what would work best for both of you
• Celebrate achievements in discovering and putting in place what works for all
• Connect with other caregivers affected by dystonia in your community.
Taking Care of Yourself
Remember that as a caregiver, your health and well-being are as important as those of your loved one. DMRF Canada support groups are open to caregivers too. If you are caring for a family member or friend with dystonia, take care of yourself as well. Get help from family, friends and professionals. If you are in a family setting, divide up chores and schedules in ways that spread the load, don’t overburden, and provide a sense of teamwork. Click here to find out more about support groups near you.
Click here for a list of the "Golden Rules of Caregiving".
For a printable version of this material, see: Support for Caregivers of Patients with Dystonia
As of 2017, there will be Canada Caregiver Tax Credit that will replace three existing credits (Dependent Credit, Caregiver Credit and Family Caregiver Tax Credit). This should make applying for the caregiver tax credit less confusing. The new credit is a non-refundable tax credit of $6,833 for expenses related to the care of dependent relatives and $2,150 related to the care of spouses or dependent minor children. For complete details on this new tax credit, visit:
As well, the new Caregiver Benefit will provide up to 15 weeks of support for a person to care for an adult family member who requires significant support to recover from a critical illness or injury. The existing Compassionate Care Benefit remains in place; it provides up to 26 weeks of leave for caregivers providing care for individuals at end of life.
For additional details on these benefits and tax credits, please visit: http://www.cra-arc.gc.ca/menu-eng.html
Check out the Caregivers Guide for Canadians, available here. The Caregiver’s Guide for Canadians guides you through typical caregiving issues and includes checklists for differing areas of eldercare, so that you can better manage and ensure that you’re providing the best care possible for your loved one.
Plus, see below some helpful tips and tools courtesy of Carers Canada. For more information on Carer's Canada, please visit their website here.
Tips and Tools:
On Employee Carers: click here
On Employing a Carer: click here
On Balancing work and care responsibilities: click here
For Parents who have children with dystonia: click here