@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?"
@Clearwater Oh I am glad you can recognize that you are not alone... Support groups are great place to receive support and listen/hear one another across common (and often unique) experiences. We hope to get more of a chance to discuss support groups today.
@Family-Caregivers-of-BC Thanks, I will take a look at the links. Do they include info on how to communicate better with the person I am caring for? I always feel guilty when I know I could have communicated better in times when I need space and do not want to make them feel bad or like they are not cared about.
@Family-Caregivers-of-BC Thanks so much. It's good to feel like someone understands...
HI Clearwater and Kari. Clearwater - Thank you for your question and your courage to ask it! This is a common question we encounter in our caregiver support calls. Relationships are tricky at the best of times! When someone is not feeling well and/or is living with a chronic condition, and family and friends who support their care are stretching themselves, emotions can be particularly challenging. This is such a common theme that we have brought some of our key resources together under the heading of the Emotional Side of Caregiving in our tops tips and tools. A good companion to consider the ways to work with strong emotion are Communication Skills to share and express yourself skillfully with the person you care for (and the health care team – when those situations arise!).
Also, I refer back to the webinar on Boundaries that I mentioned to Doug a few questions back. Knowing where your limits are and setting your boundaries with the personal you care for can help.. Our Caregiver Support staff also welcome you to call our line (1-877-520-3267) if you think this may help - to talk it through with someone. We are here to offer emotional support.
@KariP47 Right?! It's so hard.
@Clearwater Same situation for me.
My mom has had serious pain for years and is so hard to deal with. I'm trying my best to support her but she's always irritable and negative. I know that it's the pain that is making her this way, but it's makes me not want to be around her. How do I help her when I kinda don't want to be in the same room as her? Help!
Family Caregivers of BC (FCBC) offers generalist caregiver support. Meaning, while there are specific aspects of your role that might be unique to caring for someone with pain, our resources cross common themes that caregivers may relate to regardless of the disease process. Check out our `top tips and tools for caregivers’ where you can review resources based on your caregiving situation and current need. The topics here include: ‘Health Care Navigation’, ’Communication’, ‘Financial Information’, ‘Technology’, and much more. We will discuss these various themes more as we address the questions here.
We also refer people to various organization that can help them consider their approach to care from a disease specific lens. For example, we would refer people to Pain BC for additional support (here is one of their brochures Chronic Pain Hurts Everyone: Support for Friends and Family), and Self-Management BC (among their programs is a Chronic Pain Self-Management Program that family and friend caregivers are welcome to attend). These groups have expertise in supporting people who are living with pain and their carers.
Here's another question we received in advance from someone unable to attend the live session: "Are there any tools or resources that can help me learn how to better support someone with pain?"