Supporting Caregiver Decision-Making

November is the month that we recognize the herculean efforts of caregivers. It is a month filled with platitudes, “put your oxygen mask on first” or “self-care is not selfish.” All well-intended and with some truth, but as a caregiver to my son Ben (Sanfilippo Syndrome) they often left me feeling guilty and burdened by yet another responsibility. Guilty because no one wants to neglect themselves and burdened because these statements did not seem to recognize the realities of my situation or present me with a viable solution.

I have been thinking a lot about this recently and the team at Courageous Parents Network (CPN) has been discussing how we might deepen what it means to actually “care for the caregiver.” One of those discussions revealed that the times I was best able to focus on myself and participate self-care activities were periods when I felt confident in the decisions I was making for Ben.

Keeping your child healthy means making a myriad of decisions, big and small every day. The pressure is immense. Decisional regret is almost always lurking. I recognize now that decisional fatigue was a barrier to my ability to find the space and time to focus on me. I believe that finding ways to support caregivers in their decisions and empowering them to feel confident in those decisions is critical to caregiver well-being. So, what might that look like for caregivers themselves and for the community of people and providers who support them?

• Caregivers acknowledge your competencies. You are an expert, bringing so much to the table. Realize that each decision you make grows your expertise. When you make a decision – big or small – think about what went well, what you wish went better. This will help you build your confidence for future decisions.
• As caregivers we often protect others from the daily grind of our decision making. Try to do the opposite. When I opened up to others, allowing them to celebrate decisions I felt confident in or puzzle alongside me when decisional regret crept in, I felt better about myself and found more space to tend to my needs. Those discussions also led to a greater realization by others of the genuine ways they could provide support to me and my family.
• Often friends and family offer help in ways that that burden the caregiver with another decision. Questions like, “what can I do for you today?” only add to a caregiver’s already overwhelmed decisional capacity. Instead try, “wouldn’t it be nice to make one less decision on Monday (acknowledgement) – I will bring you dinner.” Without judgement, be inquisitive about the weight of our decisions. Too often, caregivers live under the pressure of always being in control. Asking about a decision, even if it is a small one, offers an opportunity for caregivers to release some of the burdens of control and recognize that we cannot do it all.
• Interactions with providers can have a profound impact on a caregiver’s decisional fatigue. When providers and caregivers practice shared decision making, it creates an atmosphere of mutual trust and respect and goes a long way toward helping parents feel valued as decision makers and more confident that they are doing the best they can for their child.

So much of the work we do at Courageous Parents Network’s is to empower caregivers to be confident decision makers and feel less alone in those decisions.  Here are just a few resources you will find there.

• Find videos on decision making and a printable guide on Shared Decision Making.
• Hear from a rare disease mom on how too many choices can become sources of stress and self-recrimination for caregivers.
• Hear from a mother whose child could participate in decision making about Collaborative Goal Setting.
• Learn how palliative care supports you in defining your goals of care and making decisions.