Family caregivers are often the unseen (and unpaid) heroes wearing many hats, like assisting a loved one with medical care, nutrition, hygiene, and other activities of daily living; coordination of care and advocacy; transportation; dealing with medical paperwork; serving as an empathetic listener and more. When a relative qualifies for hospice and only has a few months to live, managing end-of-life care and grief adds another layer to their responsibilities.
“The day the roles reverse is foreign,” writes Lisa Goich-Andreadis in 14 Days: A Mother, A Daughter, A Two Week Goodbye. “It’s a clumsy dance of love and responsibility, not wanting to cross any lines of respect. It’s honoring this person who gave their life to you…and taking their fragile body in your hands like a newborn, tending to their every need.”
Who are the Caregivers?
February 17, 2023, is National Caregivers Day to honor individuals who selflessly provide personal care, as well as physical and emotional support to those who need it most. These statistics on family caregiving are telling (includes caregivers for a parent, spouse, child, or relative with an illness or disability):
- In 2020, 41.8 million Americans (or 17% of the population) provided unpaid care to an adult over the age of 50.
- 89% of caregivers provide care for a relative or other loved one, such as a spouse.
- The average caregiver is 50.1 years old.
- Caregivers spend an average of 23.7 hours per week providing unpaid care for loved ones they don’t live with. Those who live with their care recipient spend 37.4 to 44.6 hours a week.
- Of the 1.72 million U.S. residents on hospice, nearly 98.7% of days spent on hospice was routine home care, taking place in the home, typically with a family caregiver and regular visits from medical personnel and an interdisciplinary team.*
- The principal diagnosis for Medicare hospice recipients is Alzheimer’s, Dementia, or Parkinson’s (18.5%); Circulatory/Heart issues (9.3%); Cancer (7.5%) and Respiratory disease (6%).*
*NHPCO Facts and Figures, 2022 Edition
Many caregivers are also raising children, working full- or part-time jobs, volunteering, caregiving for more than one recipient, and/or handling other responsibilities.
Six Ways Caregivers are Heroes
“Caregiving often calls us to lean into love we didn’t know possible,” writes Tia Walker in The Inspired Caregiver: Finding Joy While Caring for Those You Love.
Caregiving can be a rewarding time with loved ones, yet draining on both the caregiver and patient. Most caregivers are often thrust into the job, but not uniquely qualified as a nurse, medical aide, counselor, clergy member, and social worker. Brave caregivers show up every day by:
- Learning a new language. Caregivers often have to learn medical terminology to communicate with nurses, doctors, social workers, and more. Keeping a loved one safe and comfortable requires a new skill set — from medication dosages to medical equipment to describing symptoms to health care providers, they often become an expert when called to the task.
- Caring for a loved one’s needs while yours get pushed to the back burner. Caregivers often have a high rate of burnout and depression because caregiving is all-consuming. Taking time for self-care is vital and often requires additional help to make sure the primary caregiver receives proper rest, nutrition and hydration, exercise, and needed breaks.
- Dealing with personal loneliness as your loved one faces isolation and loss of socialization. While caring for your family member can create some sweet memories, caregivers typically withdraw from their normal routines and even friendships or social events. Taking time to meet a friend for coffee, talk on the phone, or attend a game night or religious service may be good for your mental health.
- Managing your own physical limitations as you watch your loved one slowly lose their strength and independence. You may have to help your relative walk, bathe, turn over, or use the bathroom, while still honoring their dignity. Securing assistive medical equipment can help with safety, but it can be frustrating if you have limited strength yourself. Many caregivers are aging themselves, with 36% between ages 50 to 64 and 20% ages 65 and older. Make sure to ask hospice professionals for tips and possible aids to assist you.
- Absorbing your loved one’s emotions while dealing with your own highs and lows. The patient will probably face stages of denial, anger, fear, frustration, acceptance — and cycle through again. They may lash out at you, shut you out, or openly share their sadness. The caregiver may have to handle uncharacteristic outbursts or silence. Seek outside emotional support and ask your hospice care team for tips on how to handle these events.
- Grieving while trying to put on a brave face for your loved one. Hospice is recommended once a patient is diagnosed with a life expectancy of six months or less. Grief is an inevitable part of the process for both the caregiver and patient. Have honest, loving conversations with your loved one on hospice. Offer sincere good-byes without putting pressure on the patient. Read these conversation tips or hospice visit suggestions. Seek support from a spiritual care coordinator, your local clergy, a support group, or certified counselor or therapist. Take advantage of bereavement care after they pass away.
Not all heroes wear capes! Thank you to the millions of courageous caregivers who provide selfless care, compassion, and dignity to their loved ones in need.
A hospice provider, like Heart to Heart Hospice, helps families set goals and create a unique patient-centered plan. They provide medical support, education, and training for in-home caregivers who manage a majority of the patient’s care. If you need a hospice provider in Texas, Michigan, or Indiana, contact Heart to Heart Hospice to see if they offer care in your area.