Caregivers Deserve Care, and You Can Help Them
By Nancy Kennedy
America, we have a problem. Fifty-three million Americans are unpaid caregivers for loved ones who live at home and require near-constant attention. These loved ones may be aging parents, a spouse with a chronic condition or disability, a family member with cancer, a child with complex medical needs, and persons who are dying. This care is constant and makes enormous physical and emotional demands on the caregiver. The patient may require medications, physical therapy, oxygen, feeding, bathing and skin care, personal care and maintenance of medical equipment.
Many factors have converged to create this caregiver crisis. The population is aging. Longevity has increased and many diseases can be managed as chronic rather than terminal illness. There are critical shortages of nurses and doctors. Hospitals have changed: admissions are short, and many procedures are now being done on an outpatient basis. Home care has become the norm.
The value of unpaid caregiving in the U.S. is $1.01 trillion every year, and there is simply no way to estimate the personal cost to those who are providing all that care.
Without a doubt, there is joy in caring for a loved one who cannot meet their own needs. There is deep satisfaction in relieving the pain of a loved one who is suffering. But as the patient declines, there will come a point where the physical and emotional demands surpass the caregiver’s ability and energy. Caregivers experience exhaustion, frustration, grief, anger and severe stress; it’s not unusual for them to succumb to serious illness themselves. Caregiving encompasses many losses. Perhaps there has been a career disrupted, a separation from loved co-workers and friends, loss of income, loss of social life and connections. Frequently, family conflicts are triggered by having a loved one in need of care giving.
Caregivers are needy too. They need support, care and understanding. They need HELP.
Here are suggestions from experienced caregivers to their friends and family who want to be supportive but aren’t sure about how to do it.
Show up, but call first and don’t stay long.
Bring food. It’s always welcome and appreciated.
Bring practical supplies like paper products.
Don’t give advice or criticism.
Ask me what I need help with. It can be very simple: water the plants, walk the dog
Do my grocery shopping and put it all away.
Be respectful of the caregiving environment.
Listen. I need someone to talk to. Just be a friend.
Self-Care is Essential for Caregivers
You may be surprised to discover that there is substantial emotional support and good advice on internet support groups. Find a group on Facebook and make friends with others who are sharing your experience and have real empathy for your stress.
Learn as much as you can about your person’s diagnosis and problems. Knowledge is one way to cope with the stress and uncertainty.
Use backpacks instead of purses. They are easy to use, comfortable, roomy and hands free. You can put a lot of stuff into a backpack, in the house or going to an appointment.
Use virtual medical appointments as much as possible. It’s much less stressful.
Prepare for in-person appointments days before. Ask about access, valet parking, wheelchairs
Decide on the personal boundaries you need and enforce them with vigor.
Lastly, love yourself. You are not just giving care, you are giving the gift of self to someone you love. Self-care means being a receiver as well as a giver. There may be gifts for you - gratitude, personal growth, greater confidence and new skills.
National Alliance for Caregiving, Washington DC – www.caregiving.org