Systems Imperative: When Families Say "No" - 2023 08 20

Everyday I read of the anguish and despair of family caregivers suffering unbearable stress because they feel they are failing their families and their loved ones in their caregiving mission.

Today I read the post from a young family caregiver (27) who was in so much pain they tried to take their own life instead of attempting to continue caregiving their grandmother (75). When the suicide attempt failed, they abandoned their grandmother to save themselves. To this young ex-caregiver I say, "You needed to save yourself in a situation that was destined to fail." To the healthcare system that put this young family caregiving in this situation, I say, "Shame on you."

I read other posts from young and middle age family members asking if they should move their family member in with them to take on family caregiving. Or if they should move to their family member's home to help them out. To these potential family caregiving families, I say, "You need to balance your feeling of responsibility to your family and the needs of your family members, to what you can actually afford when it comes to the real costs of family caregiving, which no one will prepare you for, at this time, because they have not been studied." To the healthcare system that is putting these families in this untenable position, I say, "Shame on you."

These examples speak to a systems imperative for a rational, coherent response to the crisis in caregiving, specifically the looming catastrophe of the failure of an inventory of robust family caregiving beds to provide essential caregiving infrastructure in the health system.

Historically, family caregivers have been isolated and unable to communicate with other families in similar situations. Today, there are 18.5k members on the Family Caregivers Support Group on Facebook and 15.2k members on the Caregiver Support group on Reddit. Family caregivers are enabled to communicate with each other, to vent, to commiserate, to problem solve and to share intelligence.

The healthcare system has depended on the isolation of family caregivers to perpetuate a system that takes family caregiving empathy and compassion for granted and then takes advantage of families in medical crisis making seemingly short-term decisions that turn into long term responsibilities.

What happens when families, in that moment in the doctor's office, or the hospital ward, say, "No. They can't come home with us." What is going to happen to all the patients and care recipients who cannot fend for themselves? What happens to families when they have to make the choice of their own (and their children's) soci-economic security, and taking on the added responsibility of family caregiving?

For some of us, there is no question and we will give everything we have to avoid facing the possibility, "We can't look after Mom anymore. She has to go somewhere else." Even if it means going into debt ourselves to sustain the mission of taking care of our family member. For others, it is not so difficult, "We made a plan for a retirement, it did not include looking after Mom. She has to go somewhere else."

These scenarios are not hypothetical, they are happening every day right now. This is the systems imperative that we need to radically re-frame our societal and systemic supports to ensure a healthy, robust family caregiving system.