“There are only four kinds of people in the world: Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.”
Family Caregiving
If you are a family caregiver or you know a family caregiver, keep reading…I’d like to help.
Family caregiving is not always something expected or planned for. Language is important, and for some, rather than being called “caregiver” they may prefer “carer” or “care partner” or “I’m simply a daughter helping out”.
It is often a “needs must” which is an old British phrase meaning when necessity compels. Over 50% of family caregivers in one study revealed that they really had no choice.1 On the best of days, however, caregiving offers an opportunity to feel useful and needed while sharing time with a loved one. It can provide a sense of “payback” to care for someone who once cared for you. Role modeling a tradition of caring for our family members is another potential benefit of caregiving.
The role of family caregiver may last weeks or months, but with a slowly progressive illness, it can continue over many years. The caregiver may be responsible for a range of activities from shopping, chores, and transportation to total care of a loved one. Based on my own experience as a caregiver for my family and as a palliative care nurse practitioner, I have witnessed and truly understand the many challenges caregivers face.
Every family and situation is unique with varying dynamics, demands, and expectations.
Physically, this work can be demanding with personal care, meals, laundry, and whatever else needs doing. Managing medications, specialized diets or nursing tasks can be daunting and all consuming. The wellbeing of caregivers can be further compromised when there is less time to attend to their own health and self-care.
Emotionally, there may be anxiety and fear about an uncertain future and increasing responsibilities, especially in the setting of a terminal illness. When leaving the home to be with family and friends becomes too complicated or even impossible, a caregiver may feel isolated.
Decision making regarding medical care, safe housing, finances and many other issues often shifts to the family caregiver presenting new territory to navigate.
If work hours need to be reduced or eliminated or an early retirement is required, there may be new financial concerns. The cost of drugs, medical equipment, additional help, or relocation to an assisted-living or long-term care facility can stress or even break the budget.
Most caregivers have no formal training for this role and feel unprepared and inadequate.
These issues are highlighted as an acknowledgement of the realities of caregiving and the need to provide support to family caregivers. This is not only compassionate, but key to their well-being and success throughout the journey. Getting support earlier rather than later can help to avoid caregiver burnout.
If there are over 53 million family caregivers in the U.S. as of 2020, we all know someone who is providing this care and carrying on everyday.2
References:
AARP Public Policy Institute; National Alliance for Caregiving. Executive summary: caregiving in the U.S. June 2105. https://www.aarp.org/ content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015- executive-summary-revised.pdf