Living With MBC Without a Caregiver (Part 2)

This is part 2 of a 2-part series on living with MBC without a caregiver. The previous installment addressed ways this reality creates additional layers of hard, on top of the difficulties experienced while living with MBC. This blog addresses tips and suggestions for those who find themselves navigating life with MBC without a caregiver.

Living with MBC as a single parent

 
Like me, if you find yourself in this role—living with an incurable disease and doing so as a single parent, without a caregiver — you may be wondering what you can do? Here are some things that helped me find strength on the journey, despite not having a caregiver. I hope these suggestions help you too!

Find your people

Forming my support circle was pivotal. Sometimes the support circle might be family, sometimes it might be friends, or sometimes, a mix of both. I have also joined several online groups that support MBC patients. I am not afraid to tell my people: “hey — you are my support system and I need you.” And I am not afraid to ask: “can I count on you to walk in this with me?”

Appreciate the friends who show up

I have learned to express my sincere appreciation to all those who show up to help. It's truly heart-warming. These helpers and supporters may be individuals who show up consistently, or they may be individuals who show up for a season and then drop back to make space for others. Whatever the case, I make a point to always tell my support system that I appreciate them—because I really do! Expressing appreciation will often remind friends and family of the unique role they play in my life, especially as they help me in tangible ways because I do not have a caregiver.

Don’t be afraid to ask directly for help

Without a caregiver, we get used to doing things on our own, but it doesn’t have to be this way. Asking directly for help might look like asking for a ride to an appointment or asking for meals to be delivered after surgery or even during a rough week. As the one living with MBC, it’s wise to conserve energy for the things I MUST do and let others help with the things they can. It’s even wise to ask for help with non-cancer-related things! Sometimes I just need help staying on top of laundry because that’s the one thing I seem to have no energy for, and my family is delighted to help with that!

Rotate friends who help

I like to spread out the help so that no friend or family member gets overwhelmed. Some weeks I might have the energy to do it all, and other weeks, I might be calling on multiple friends. I find that rotating my friends and support spreads the load, and I often let friends know I will reach out when I need help with anything, whether it’s another errand or visit, or even just a listening ear.

Take time to process

Without having a consistent caregiver, I’ve learned I need to make sure I am taking time to verbally and emotionally process what I am going through. This might look like having a group text to share details with trusted friends or family. Or, it might look like having a monthly lunch appointment with a best friend who will hold space and allow me to vent. Whatever the outlet, I try and make time to process with safe people.

Allow permission to feel the extra emotion

I have sought counsel and therapy frequently. I have allowed myself to honor the reality: living with MBC is incredibly hard and doing so without a partner or caregiver is extra hard. It’s okay to feel the emotions that come with this, and it’s okay to long for things to look different. Once I give myself permission to feel and process, I can then commit to making the best of the situation, even without a consistent caregiver.

Editor’s Note: We are extremely saddened to say that on April 3, 2023, Amanda passed away. Amanda’s advocacy efforts and writing continue to reach many. She will be deeply missed.