We talk a fair amount about the people in our lives who we look to for support/care in the online MBC support groups. Yes, there’s a fair amount of kvetching about the stressors or disappointments because no relationship is perfect; at the same time, I see many more posts laced with love and concern for our caregivers. We all grieve the changes that MBC brings and nothing is more brutal than watching those we love have to bear that burden with us.
Recently, in a support group that my dad and I moderate for the 305PinkPack, we invited caregivers to attend and share. The purpose for inviting the caregivers was two fold:
- After my husband attended an MBC event about a year after I was diagnosed and had the opportunity to talk and observe others with MBC, he shared with me how much it helped him understand what I was going through. Things he thought might just be my own idiosyncrasies were much more universal (although to be fair, I do have a lot of idiosyncrasies). Since many caregivers haven’t had the opportunity to gather with other families affected by MBC because of the pandemic, inviting them to attend a group where people share so openly has been helpful.
- Just like it was good for my husband to observe others with MBC, it is also good for caregivers to observe each other, to see how others are handling (or not handling) the ups and downs of caring for someone with MBC. Knowing that you are not the only one to think something or feel something or experience something can be all the support necessary to cope with the weight of MBC as we so often discover in our MBC support groups.
We had a pretty good cross section of caregivers attend — parents, spouses, and adult children. The depth of feeling and vulnerability from the men and women who continue to show up for each other never ceases to amaze and humble me. Each shared from their hearts and there was no shortage of tears.
Here’s what we learned:
- Everyone handles caregiving in their own way. Some of the caregivers we didn’t see attending the meeting were the ones who tend to keep their eyes focused on something else as a distraction, like work or hobbies. Others, like one scientist whose spouse has MBC, wants to know every little nuance of information so that he can prepare a plan of action. And there were others in between. Each caregiver experiences MBC uniquely despite some of the commonalities.
- Each caregiver feels deeply the pain of the physical and emotional weight of MBC and struggles with feeling helpless. While the more stoic of caregivers might not verbalize this often, that sense of wanting to help and not being able to help was a consistent theme. No one likes to see someone they love suffering.
- Caregivers need their own support system to be able to continue caregiving. As those of us with MBC know, there is nothing easy about living with the disease, the treatments, the side effects, the setbacks, etc. Just like those of us with MBC need support, so do our caregivers. Yet, often the person with MBC has historically been part of (if not the main) support for the caregiver. When the caregiver can no longer expect support from the person with MBC, that caregiver needs to replace that support elsewhere.
- When caregivers pursue (and keep pursuing) the person with MBC, the person with MBC can feel comfortable leaning on them. This concept came up in the context of adult children asking questions and pursuing information from their parent with MBC. A mother with MBC expressed concern about leaning on her adult child and yet the adult child wanted to provide that support. While each caregiver is unique, the group generally concurred that if a caregiver wants to know, the person with MBC can feel comfortable sharing. Communication being key to navigating how much and how often.
- The person with MBC may communicate differently than the caregiver anticipates and adjustments may need to be made. As an example, my parents shared how they have had to learn and adjust to the fact that I often communicate more about how I’m feeling through writing rather than sharing verbally, especially when I’ve already shared about something once.
- There is a significant lack of support for caregivers. Each of the caregivers who attended the meeting talked about how talking with other caregivers would be helpful for them, but that the opportunity hasn’t presented itself. Some of the caregivers have an established therapeutic relationship and the therapists who are the most helpful are those who have had some experiences with cancer or even MBC in their own families.
- Caregivers need a life/experiences/hobbies/etc outside of MBC. While cancer/MBC will always be a part of a caregiver’s life experience, the people with MBC in the group consistently communicated how they didn’t want MBC to become the caregiver’s entire lives, that they need other outlets.
- Sometimes caregivers don’t want to engage with others and support groups aren’t for everyone. Many of us with husbands who tend to be more private have discussed this often. There are those people, perhaps particularly men, who aren’t the type who seek out groups or prefer to talk one on one or just don’t want to talk at all. As I referenced above, it has helped my husband to have opportunities to observe where engaging is on his own terms — we’re both introverts, so this is something I do understand personally.
I came away from our meeting with so many thoughts and ideas about how caregivers need support and yet that’s just not a project that I think someone with MBC can provide. I did some searching and did find that some organizations like Gilda’s Club, American Cancer Society, and others do offer some support groups for caregivers, but each different chapter has different offerings. One of the wonderful things about engaging palliative care is that the palliative team is focused on providing support to the entire family unit, not just the patient and social workers are typically aware of local support for patients and caregivers. Specifically for those of us with MBC, Project Life also offers online programs targeting caregivers like art therapy, healing circles, and more. Informally, I’ve often connected caregivers who have lost their person with MBC, particularly mothers, so that they can support one another.
So, dear readers, now it’s your turn. What resources are “out there” for caregivers? I’d love to have a list to share!