Caregivers play a vital role in the lives of people with persistent pain. It takes strength, patience, and energy to support a person living with pain, so it’s important caregivers feel well supported in managing their own wellbeing. Family Caregivers of British Columbia is a non-profit organization leading the efforts to provide support, information, and education to caregivers across the province.
Join Pain BC and Family Caregivers of BC for a live Ask the Expert forum discussion on July 18, 2019 from 1:00-2:30pm PST, during which you’ll be able to anonymously ask questions and learn more about caregiver wellbeing and the supports and services available to caregivers in BC.
Ask Family Caregivers of BC your questions! Participate live on Thursday, July 18, 2019 at 1:00pm PST.
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Hello again - one last thought.... as the question of finances came up and we did not speak to that. Caregivers are sometimes juggling work and financial constraints. One question that a caregiver had before the forum was:
I work full-time while trying to support my mom with her pain. I think I’m going to need to reduce my hours at work to be able to care for her, but I can’t really afford to do that. Are there any financial benefits available to make that possible?
And we are glad you are considering your options before moving into action. Without a plan – big changes like this can add to the financial strain and stress. We would like to answer this question in two parts: I) what resources for support you may access as a caregiver who works outside the home, and II) what financial support might be available as a caregiver.
I. Work and Caregiving : The strains of caregiving take their toll. A quarter of caregivers report a change in employment including turning down training opportunities, promotions, taking a loss of income or simply having to quit their jobs altogether. Almost 15% report health and sleep problems and over a third report emotional difficulties due to caregiving. Check out our section on work and caregiving to consider your personal situation and needs.
II. Financial Impact of Caregiving: Lack of funding and the need for financial assistance are issues Canadian caregivers most often identify as their biggest stressors. Again, because each situation is unique we cannot provide direct guidance on financial matters. Instead we have developed a financial assistance guide where caregivers can see if there are any avenues for additional support that are unique to their care recipient and their caregiving situation. For example, do you know that there is a Canadian Caregiver Credit that may be available to you?
Nidus – (www.nidus.ca) is also a good provincial resource for financial planning.
Yes – this is another common theme that caregivers are seeking support around. How to navigate the health system, and to be recognized by health care teams as a caregiver with important perspectives to share are discussed in our section on Health Care Navigation. This section is by no means comprehensive, but it is a good start to help you think through the health care system, how to bridge communication with health care providers, and establish yourself as part of your care recipient’s health care team. What we appreciate about your question is that you know your value as an advocate. Please remember we are here to support your process. In addition to reviewing our materials you are welcome to call for 1:1 support to navigate the complexity of the health care system.
The live discussion is now closed. Thanks for your questions everyone!
Great! Lacie and Whitney, we’d like to share our deep appreciation with you both for taking time out of your days to lend your expertise on caregiving for our community members. It’s heartwarming to see there is a wealth of knowledge and resources available to support caregivers living in BC. Thank you!
We thank you all for your time and presence on the forum today.
Thank you for all your fantastic questions.
For more information you can:
We hope you will consider Family Caregivers of BC as part of your network of support!
@Family-Caregivers-of-BC Oh, that sounds really helpful!
@OrangeKat Sure... We also have a Caregiver Coach here at Family Caregivers of BC. This is an opportunity to work 1:1 with someone over a period of calls to explore one's personal situation and caregiving role, and to create an action plan for change. In this way people can have support to take incremental steps toward improving their own health, and get help (if needed) to navigate the health system and increase supports. This can help set people up to continue on with the support they are offering to others in their lives while maintaining their own well-being in the process.
Fantastic, thanks for providing additional context to OrangeKat with your response. While we're out of time, we had 2 more questions we received in advance that we'd like to share if time allows. The first one asks: "So much of my role as caregiver is helping my partner navigate the health care system. Are there any resources that can help me learn to do that better? It’s so hard to know how to effectively advocate for better care."
Thank you to Sim - the Forum Moderator for prompting more of a response to OrangeKat with this question from someone else about caring for someone with limited (to no support).
This question, like the others here, that we often hear from caregivers. The sense of isolation that caregivers can feel is very common. Again, we invite you watch our ‘Building a Gold Medal Network of Support’ webinar. When you think about it, who does everything for themselves under normal circumstances? We all tend to rely on others for assistance in our daily activities and being a caregiver adds the needs of another individual. Whether your caregiving is short-term or long-term, asking for and accepting help is a good idea. So – who can you turn to for help and how do you ask? These are some of the questions Jodie McDonald addresses in this webinar on Building a Gold Medal Support Network. Jodie is a seasoned Social Worker with experience in crisis intervention, family support, mental health and community development. One of Jodie’s areas of specialty is assisting caregivers establish Circles of Support. Jodie shares her insights from this work and helps you identify your caregiving needs, think through who you can ask for help and provide tips on how to approach the ask. Learn how to access and use the resources that are available to you, creating a Circle of Support from which both the giver and receiver can benefit.
@Family-Caregivers-of-BC Thanks. I'll look at those tools and maybe get him to call you. It might be easier for him to talk to someone else?
Thanks for raising an excellent question, OrangeKat. Yes, absolutely. The question that was submitted was "Do you have any tips for how to manage as the sole caretaker for a person living with pain? I don’t really have a support network to draw from."
@Family-Caregivers-of-BC We also have another question that came in before the live forum about when networks of support are limited... I wonder if we might talk about this more now...
@OrangeKat Hi OrangeKat - We are truly touched by your question. There is no one answer to your question here as all relationships and their approach to communication is different. How wonderful that you are considering where he is at.
What strategies might open communication between you - to explore further your concerns (and possibly, his)? If appropriate, you are welcome to share our number and/or website - this could give him some time to consider how he is doing. Maybe the self-assessment checklists and flip-books (as per the previous question).
I've got a question from the other side: I'm a person with pain and my husband takes care of me and our kids. I'm contributing to our family as much as I can, but there's a lot I can't do. How do I make sure he's ok? I always ask him about it and he says he is but I don't know if he'd tell me that he's drowning because he wants to be strong for me. And if he admits he's not coping, then what? We don't have family close by or money to hire help.
We do hope our resources and responses can help your community. And your questions are excellent.
What to do when one is feeling overwhelmed and 'burnt out' from caregiving. If possible, seek out resources and supports (as per our previous question) before caregiving becomes overwhelming. And also caregiving does become overwhelming at times. Recognizing that life if full of change, we believe these overwhelming states can also change. If you are feeling overwhelmed, you may choose to check in with a health care provider. You can also call our Caregiver Support Line to explore options to navigate your caregiving situation.
One of our ‘top tips and tool’ themes is Caregiver Well-being – here you can explore articles on ‘Preventing Caregiver Burnout’ and ‘Hints for Stress-Reduction’, along with viewing a number of webinars including ‘Mindfulness Practices for Caregivers’.
We also strongly encourage building in time for respite. The ability to pause and take time for yourself is essential and can reduce the risk of becoming overwhelmed and burned out. If you do not already build respite time into your caregiving role, consider exploring what it is, how you can access it from the health care system, how to tap into it using your own support network and why it needs to be scheduled into your caregiving plan. One webinar where we discuss this in detail is ‘The Importance of Taking Time for Yourself’.
Fantastic - thanks for the level of detail you've shared in your reply, we appreciate seeing a variety of resources available to support caregivers. Going back to a similar question raised by Clearwater, another community member asked what they can do when they start to feel overwhelmed or 'burnt out' from caregiving?
We were very grateful to receive this question.
Each person’s needs and approach to accessing and receiving support will be different. Here are a few suggestions to get you started – see what resonates for you:
I. Check in with where you are at as a caregiver through a few self-assessment tools:
Based on responses in these self-assessments you may gain insight into where your strengths lie and what aspects you might further consider or develop to support yourself in your caregiving role. Other resources we have include an online short course ‘Staying Healthy while Caregiving’ and flipbooks on caregiving and resiliency.
II. Attend a Caregiver Support Group in your Community:
There is value in peer support (see article on this here). Some caregivers find support in the wisdom and experience of other caregivers. In caregiver support groups people come together to share experiences, listen to one another, and exchange information without judgement. These groups aim to create a safe and confidential space for community connection and sharing. For a list of general caregiver support groups (meaning anyone caring for an adult for any reason can attend) on our FCBC website under Family Caregiver Support Groups. Pain BC also has a Social Media Community for British Columbian’s living with chronic pain as well as their family and friends.
III. Call our FCBC Caregiver Support Line for 1:1 support:
Sifting through the various resources and information can be overwhelming. Our FCBC staff on the Caregiver Support Line (1-877-520-3267) are experienced in addressing caregiver situations. We have time to listen. We are then able to help with: Information and referral resources, healthcare navigation, emotional support, access to support groups, and access to webinars, articles and resources specific to your needs. If your situation is complex we can also refer you to a Caregiver Coach for additional support. With a Caregiver Coach you will explore the aspects of your situation, create an action plan to help you move through it, and have follow up calls to help keep you on track.
@Family-Caregivers-of-BC OK thanks so much for your help I will take a look!!
@KariP47 Hi Kari - Yes, one of our webinars is specifically on communication. Coach Caregiver: Communicating in Difficult Discussions. This webinar would offer skills to apply with the person you are caring for, the health care team, and other people in your life. The technique that Jodi (the presenter) describes in this video is 'Non-Violent Communication'. As a tool it allows us to speak from the point of view of feelings and needs instead of judgments and accusations. The quality of conversations – particularly challenging ones when we are in conflict with someone or need to ask for something - improve dramatically when using this technique.
Thanks for that discussion and for raising a call to discuss support groups - this leads us to our next question which was submitted in advance. Someone asked, "How can I support myself as a caregiver?"