A Guide for Family Caregivers
You are not alone
More than 12 million men, women, and children in the United States need some kind of help with daily activities. About five million are working age adults. About half a million are children under age 18.
Where do they get the help they need? Primarily, they are cared for at home by an estimated 18 million family caregivers. A vast majority of caregivers are women. According to one survey, 54% care for their spouses, 21% care for their parents, and 17% care for their children. Over half of them are employed full time.
While most report feelings ranging from anger to guilt to frustration to depression, most all believe that through the caregiving experience they have found inner strength they never knew they had.
You are important
As a family caregiver, there is no one who can do the job you do. Your emotional bond with your loved one makes your relationship special. It cannot be duplicated even though others can provide important services. Your willingness to take on the enormous responsibility of caring for another human being shows an uncommon level of character and compassion. Even though your job is difficult and often seems thankless, you are a role model for everyone who comes in contact with you.
If everyone could make a difference in just one person's life, as you are, the world would be a much better place. As you work to provide care for another, make sure you take time to take care of yourself -- because you are important.
How are you doing?
The biggest mistake a family caregiver makes is usually not involved with patient care -- it involves self care. Family caregivers often don't allow themselves the breaks they need. Sometimes they take the caregiving burden solely on their own shoulders even when there are sources of help. They may wait (resentfully) for others to volunteer to help. When no one does, stress increases and important relationships become strained.
If you've taken on the role of caregiver, pay careful attention to your own well-being: mental, physical, and emotional. When you ask yourself the question, "How am I doing?" and the answer is "Not very well," it's time to get help.
The top 10 needs of family caregivers
- Information about community resources
- Help with feelings of resentment and guilt
- Help with dealing with the patient's feelings of loneliness and depression
- Information about the patient's diagnosis and prognosis
- Respite care. A break from caregiving
- Diet and nutrition information
- Information about where to get legal advice
- Help with housekeeping, cooking, and house and lawn maintenance
- Spiritual comfort
- The promise that someone else cares about and supports
their caregiving work
The 7 signs of caregiver burnout
- Not eating properly
- Becoming more emotional
- Feeling overwhelmed
- Starting to withdraw
- Interacting less with peers
- Having less mental focus at work
- Having a disheveled unkept appearance
Get information about the basic caregiving functions
Despite the best of intentions, family caregivers can cause harm to their loved ones and to themselves. It is best to get information and, if possible, training in providing basic care. Basic categories include activities of daily living such as --
- Bathing
- Dressing
- Feeding
- Toileting
- Grooming
- Transfers (e.g., bed to wheelchair)
- Moving around
If caregiving involves giving medications, operating or maintaining medical devices, or monitoring physical signs and symptoms, proper training is essential. Caregivers may want to know CPR. Most Red Cross Chapters have classes in CPR.
It is also a good idea to learn about any basic adaptations that would make the home living environment safer or easier to live in.
Other important activities of daily life
In addition to caregiving functions involving the activities of daily living, people needing care (as well as their caregivers) can benefit greatly from various activities such as --
- Conversation and socialization
- Music
- Life recall and life planning
- Physical activity/movement
- Contributions to family, home, and community
- Activities
Some patience and planning in these areas can pay off in a better life for everyone.
Finding the help you need
Take a "tour" of your phone book and Yellow Pages and see what you can find out by talking to:
- Home health agencies
- Local social service agencies
- Local Area Agencies on Aging
- Area churches
- Local support groups - Disease specific such as Parkisions Association, Alzheimer's Association
- Nursing homes
- Nursing homes that offer short-term stays
- Adult day care centers
- Hospice