Parkinson’s is a family disease, one that takes a team of involved and
supportive caregivers to help an individual with Parkinson’s thrive. In most
cases, however, the bulk of responsibility lies with one main care partner—a
spouse, a child, or a friend. For this individual, life is changed forever when
their care recipient is diagnosed with Parkinson’s and they must take on many
new roles. Theirs is a demanding job, and one that many take on willingly
without hesitation. It’s a role that demands compromise, encouragement and
strength.
A care partner’s
role evolves over time and the focus may be on providing emotional and physical
support to their care recipient, advocating on their behalf, and learning all
that they can about Parkinson’s disease.
“Parkinson’s affects each person in a different way, so there is no ‘one-size-fits-all’
approach to caregiving. This can make it hard to define the role,” says Grace
Ferrari, Senior Manager, Education and Support, Parkinson Canada. “Parkinson’s
affects each person in a different way, and changes over time, so there is no single
approach for every care partner.”
Parkinson Canada’s first ever Care Partner Summit is a day dedicated entirely to educate and support care partners, and recognize the vital role they play for people with Parkinson’s. Care partners will have the opportunity to connect with each other, and learn from guest speakers. Participants will leave with valuable tools, tips and resources to use daily at home. This interactive day will focus on collaborative care partnering to improve quality of life, both for the care recipient and the care partner.
Expert presenters and sessions include:
“Caring & Giving: Finding balance in a life that tilts in
many directions”
Neli
Gontier is the Education &
Training Specialist for Parkinson Canada. As lead author and developer of
several educational resources, including the ACT on Time™ program and the newly
released Care Partnering book, Neli’s
presentation will focus on better understanding the care partner experience;
identifying the emotional, physical and psychosocial needs; assessing the
burden that care partners/caregivers live with; and, learning to prepare an
effective Self-Care Plan. This
presentation will be hands-on and engaging.
“Family
Carer – The Invisible Patient”
Dr. Adriana Shnall received both her MSW and her PhD from the
Factor-Inwentash Faculty of Social Work (FIFSW), University of Toronto.
Adriana is the Manager and Professional Practice Chief for Social Work
and Manager for the Koschitzky Family Caregiver Centre and the Seniors
Counselling and Referral Program at Baycrest. Adriana has 25 years of
clinical experience working with older adults and their families including
outpatient community services, long-term care and inpatient services.
Adriana has an academic appointment with the Faculty at the rank of Assistant
Professor and teaches at the Factor-Inwentash Faculty of Social Work and at the
Institute for the Life Course and Aging, University of Toronto. Adriana’s
presentation will identify the caregiver and the stages of caregiving; look at
the stresses that impact caregivers and how to identify them; and, provide
strategies for coping with the challenges of providing care to someone with a
long-term, chronic illness.
“Personal growth and social connection within our communities: a person-centered, community-integrated focus on the meaning and being of a care partner”
Jane
Teasdale is well known for developing awareness of home and
healthcare issues in the community and for encouraging collaboration between
public health, for profit and not for profit service providers in Ontario’s
Greater Toronto Area. She is the founder
of Mosaic Home Care & Community Resource Centres which offers a person
centered community integrated model of care that is unique to the homecare
industry. Jane’s presentation will focus
on person-centered care outside of the clinical or medical frame. It will explore the importance of meaningful
conversations, social networks and strong communities for social and emotional
well-being and how to address isolation and loneliness. It will also guide you
on how to find, assess and use community supports and services for improved
social, emotional and physical well-being.
“The Summit will provide care partners with information, tools and tips to help them work through their challenges and successfully manage the care partner, care recipient relationship,” adds Ferrari.
Care Partnering: Managing Parkinson’s Disease Together is a book dedicated to care partners. To order your complimentary copy, contact education@parkinson.ca
Not attending the Summit? Here’s some helpful information.
Lessons Learned
Over and over, care partners report similar experiences about the challenges they face in helping their care recipient. Because of the progressive, degenerative nature of Parkinson’s, a care partner is challenged to know what degree of support their care recipient needs at any given time. It is important that a person with Parkinson’s is able to speak for themselves and manage their own life for as long as possible; however, the care partner is a key member of the team. The relationship is sometimes described as one that begins as ‘partner’ and evolves into ’care provider.”
Care partners, here
are a few practical steps for you to follow:
- Be an active member of the team: attend medical appointments and be involved in every decision about your care recipient’s treatment. Research shows that people with actively involved care partners tend to do better.
- Ask questions until you understand the answer: Parkinson’s is a complex, neurodegenerative disorder. There is a lot to understand. Don’t hesitate to ask questions until you feel comfortable that you and the person you care for fully understands the answer—this includes information about medication (what it is for, side effects, when to take it, and things to avoid).
- Keep your care recipient honest: people tend to leave out important pieces of information when speaking with their doctor/neurologist either due to embarrassment or they simply think it doesn’t matter. It is very important that care partners encourage their loved ones to tell their doctor everything including symptoms, changes in behaviour, other medications or supplements.
- Speak up for the person you care for: sometimes people with Parkinson’s simply cannot communicate for themselves so care partners must speak up for them.
- Know what hospitals and/or care facilities have expertise with Parkinson’s disease: lack of Parkinson’s education is the primary complaint that Canadians with Parkinson’s and their care partners have reported about interactions with healthcare professionals coast-to-coast. If you have the opportunity, choose a facility that understands how to best care for someone with Parkinson’s disease.
- Get to know the nurses: whether in hospital, a care facility or at the movement disorder clinic, get to know the nurse(s) who will provide care. If necessary, explain the importance of administering medications on time and act as a Parkinson’s resource for them—your efforts will not only benefit your care recipient, but also every person with Parkinson’s who needs care in the future.
- Take the opportunity to educate others: whether in a hospital, walking down the street or sitting in a restaurant, chances are that some aspect of Parkinson’s will draw the attention of others to your care recipient. Make the most of the situation by explaining what is happening and letting others know how they can help.
- Become an expert about supports and services: find out what kind of support is available in your community and what the criteria for qualification are (home care, disability, CPP, tax credits, and organizations like Parkinson Canada).
- Befriend another care partner: having someone who understands your situation can be helpful. Over 240 Parkinson support groups operate in Canada—simply contact your Parkinson Canada local office to find the group best suited to you.
Questions?
We are here to help. 1 800 565
3000