Tools and Resources for Caregivers

May is Family Caregiver Month, an opportunity to acknowledge and celebrate the dedicated efforts of caregivers across the province. Over one million caregivers in British Columbia provide 80% of the care for their loved ones, contributing $3.5 billion in unpaid labour to our healthcare system annually (“Caregivers in Distress: A Growing Problem,” 2017).

Life with Parkinson’s disease (PD) has a profound effect, not only on the person diagnosed, but also on those close to them. While being a caregiver may strengthen relationships and foster deeper connections, its many challenges can impact day-to-day responsibilities, like self-care and employment, as well as relationships with family and friends. Care is not limited to just physical tasks, but can also include emotional and spiritual support. Assessing your individual strengths can help shape your role as a caregiver and allow you to supplement them with help from others. Taking a proactive approach means you can participate in making informed decisions and be involved in healthcare discussions. It will also allow you to implement the support you and your loved one need, while helping alleviate some of the stresses associated with caregiving.

For the purposes of this article, the term ‘caregiver’ will be used to encompass a broad range of relationships in which one or more individuals care for someone. We recognize that not every person providing care to a loved one identifies as a caregiver. Some may prefer the term ‘carepartner,’ as this term includes and recognizes those who are not usually the sole decision maker in their loved one’s care, but rather assist where necessary.

Helpful Tools and Resources for Caregivers

Because the role of a caregiver can last many months or years, it is important that it is sustainable. Despite the importance of ensuring their own needs are met, many caregivers struggle with multiple, conflicting demands on their energy and time. Fortunately, there are many tools available that can help ease the burden on caregivers and restore balance in their lives.

Parkinson Society BC Resources

Tools for Caregivers

Parkinson Society BC (PSBC) is committed to offering support and sharing reliable information, so that every person touched by Parkinson's knows they are not alone. We are proud to support caregiver wellbeing with the following resources:

Support groups: Joining a support group can be an opportunity to meet others with similar experiences in a friendly, supportive setting. These groups are a great reminder that you are not alone in your journey. To join one of Parkinson Society BC’s caregiver support groups, please visit www.parkinson.bc.ca/groups.
PDLink: PSBC recognizes that not every caregiver has access to a support group or is comfortable in a group setting. PDLink, a peer-to-peer support program, was developed as an alternative, or complement to, our support groups. It matches people with PD and/or their caregivers with someone that has similar experiences to their own. Once paired, participants can communicate over the phone or via e-mail – in-person interaction is not required. To learn more, please visit www.parkinson.bc.ca/pdlink.
Counselling: Parkinson Society BC offers free, short-term, and non-crisis counselling services. Counselling will provide you with a safe and structured environment to discuss challenges and process emotions. Visit www.parkinson.bc.ca/counsellingto learn more or book an appointment.
Journaling: Writing down what’s going on in our minds can help us clarify our thoughts and feelings in a safe and private way. Caregivers may find that incorporating a journaling practice into their self-care routine can help them grow self-awareness and better cope with difficult feelings. For tips on how to start journaling, please visit www.parkinson.bc.ca/covid19-journaling.

PD-specific tools

Tools aimed at helping a loved one with Parkinson’s can alleviate stress, while providing caregivers the peace of mind that their loved one is receiving appropriate care. Below are two tools that can help:

Aware in Care: With more frequent visits and a high sensitivity to the timing and dosing of medications, people with PD face greater risks in the hospital. The Aware in Care kit is designed to protect, prepare, and empower people with Parkinson's and their caregivers for a hospital visit. Each kit includes various tools and information to ensure people with PD get the best possible care during a hospital stay. To learn more or to order a kit, please visit www.parkinson.bc.ca/awareincare or phone 1-800-668-3330.
ParkiTrack: Helping a loved one with Parkinson’s track their symptoms does not have to be complicated. ParkiTrack was designed to help people with PD get the most out of their medication. Caregivers can help log symptoms and medication side effects, so they may be discussed at future neurologist appointments. Download a digital copy at www.parkinson.bc.ca/parkitrack.

Other Digital Resources

Smartphone Apps

Caregivers often have a lot on the go, balancing their personal obligations with the needs of their loved one. It can be overwhelming having to juggle so many commitments simultaneously. However, many of us hold a powerful key to organization and better time management right in our pockets. Smartphones provide us with access to many useful, convenient tools with just the swipe of a finger. Here is a list of free apps that can help caregivers better manage their time as they continue providing the best possible support for their loved one. Each app listed below is available for download via the Apple App Store and Google Play:

Lotsa Helping Hands: This is a community-building app that enables multiple caregivers to create a network of support around their loved one. They can post tasks others can assist with, such as rides to appointments, meal and grocery deliveries, and visiting hours. Friends, family, and neighbours can volunteer to help whenever they are able, which can help alleviate some of the responsibilities of the primary caregiver. The app also allows caregivers to post updates for anyone in their loved one’s support system, along with uplifting and loving messages.
Medisafe Pill Reminder: This app helps with medication management by providing timely alerts. If an individual with PD forgets to take their medication on time, a caregiver receives a notification on their smartphone, advising them to check in on their loved one. Additionally, the app provides a series of helpful reminders, such as appropriate times for a prescription refill pickup or a new doctor’s appointment.
Google Calendar: This digital calendar app provides an easy-to-use scheduling assistant that can help caregivers stay organized. It can schedule events directly from Gmail while integrating seamlessly with all the calendars on a device, including Microsoft Exchange and iCloud. Use it to track medical appointments and caregiving commitments, as well as to carve out blocks of self-care time.
First Aid - Canadian Red Cross: This app provides step-by-step instructions and videos for common first aid scenarios, arming caregivers with vital, potentially life-saving information. Content is preloaded and saved to the device locally, so no internet connection is required to access the app in case of an emergency.

Virtual Mental Health Tools

Unfortunately, COVID-19 has compounded the challenges presented to caregivers, as they have had to navigate the pandemic while continuing to care for their loved one. Over 50% of caregivers reported a decrease in their mental health during the pandemic, and half stated they were providing up to 10 hours of extra care per week (“Family & Friend Caregivers on the Front Lines,” 2021). During these unprecedented times, it is more important than ever for caregivers to prioritize their mental wellbeing. Here are some free, accessible digital options that may help:

Elizzbot: This on-demand, confidential smart chatbot was designed with family caregivers in mind. Elizzbot utilizes self-learning artificial intelligence to help caregivers build resilience and self-awareness using cognitive behavioural therapy (CBT) skills. It can be contacted via Facebook Messenger, or text message by texting “Hi” to 647 492 8640. Learn more at www.elizz.com/elizzbot.
Bounce Back® BC: This virtual mental health skill-building program is based on the principles of CBT and is available to British Columbians who are suffering from mild to moderate anxiety or depression. Individuals can choose to work alone or with a Bounce Back® trained coach, who will help them work through the material in up to six telephone sessions over three to six months. Learn more at www.bouncebackbc.ca.
7 Cups: This anonymous 24/7 chat is staffed by trained volunteer listeners who are ready to lend a compassionate ear whenever one is needed. Caregivers may find that having someone who nonjudgmentally listens makes a world of difference. Discover more at www.7cups.com.

As every individual with Parkinson’s disease is on their own unique journey, there is no one-size-fits-all approach to caregiving. However, what is certain is that caring for a person with Parkinson’s means caring for yourself. When caregivers are able to manage their time, fulfill their obligations, and lead satisfying, happy lives, they are then able to provide the best support for their loved one with PD.

Sources

Caregivers in distress: A growing problem (2017, August 30). Office of the Seniors Advocate British Columbia. Retrieved from https://www.seniorsadvocatebc.ca/app/uploads/sites/4/2017/08/Caregivers-in-Distress-A-Growing-Problem-Final.pdf

Family & friend caregivers on the front lines (n.d.). Family Caregivers of British Columbia. Retrieved from https://www.familycaregiversbc.ca/wp-content/uploads/2021/04/210322-FCBC-COVID-19-Survey-Highights-Release-rev2b-1.pdf

This content was published in the Spring 2022 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.

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