More than ever before, families are providing long-term care to older adults with limitations in the ability to perform tasks necessary for independent living. Nearly 25% of American households are providing care to people age 50 years and over. Families are the foundation of a stressed healthcare system. Hospital stays are shorter than ever and family caregivers are often expected to do what healthcare professionals once did, and do so without training.
Family members often:
- Monitor symptoms and administer complex medication regimens
- Assist with personal care
- Perform housekeeping tasks
- Provide emotional support
- Manage difficult behaviors such as wandering, aggression, & hallucinations
- Deal with healthcare providers and insurance companies
- Manage finances
- Coordinate care
- Deal with uninvolved or unhelpful family members
If you or someone you know is arranging or providing care for someone experiencing illness-related losses or frailty, there are some important facts you should know.
What are the effects of caregiving?
Caregiving is what professionals call the unpaid work of family members that make it possible for spouses and parents to live at home longer. Most family members think of it as doing what comes naturally when you're a wife, husband, daughter, son, or other family member.
While many caregivers find much meaning in being able to help a loved one, there are health risks associated with long-term caregiving:
- 80% of caregivers say they feel a great deal of stress.
- 50% have clinically significant depression.
- Anxiety is higher in caregivers than non-caregivers.
- Caregivers have more physical health problems.
- Strained caregiver spouses are at increased risk of dying.
- Caregivers have poorer immune system function and slower healing of wounds.
- Caregivers experience more colds and other viral illnesses.
In addition to health risks, caregivers can experience financial strain associated with illness expenses, passing up promotions, and reducing work commitments in order to continue giving care to a loved one.
Effects on the Family
Spousal caregivers. People providing care to a husband or wife often experience significant changes in marital relationships. Responsibilities that were once handled by the ill spouse may have to be taken over by the caregiver. This may involve learning new skills at a time when there is less energy for new things. Many times, the spouse feels that roles have been reversed and this can be overwhelming and frustrating. There are also losses. Activities that once provided pleasure and deepened a sense of connection may no longer be possible. Caregiving spouses can begin to feel very isolated from their friends and feel tremendous guilt about their own unmet needs.
Adult children providing care. Caregivers often are raising families at the same time they are helping an older family member. Caregiving can affect the siblings, spouses, children and grandchildren of the caregivers. Sometimes it seems as if everything in the family revolves around the health concerns of one person. This can lead many people in the family to feel like health problems have taken over family life. When this happens, needs for attention go unmet and relationships that were doing well before may become stressed. Often, family members who are not providing direct care to elders feel guilty for expressing their own needs in the face of family struggles. When needs go unmet for a long time, unexpected problems may occur. Husbands and wives may feel more distant and intimacy suffers. Conflicts that were tolerated before can become more heated, as people are more tired and frustrated. Children can develop academic or behavior problems that require more energy at a time when less is available.
How Can You Tell if Caregiving is Becoming Risky?
People who have a lot of unmet needs and anxiety about how things are going tend to let positive health habits drop and engage in activities which feel immediately rewarding, but are ultimately bad for health.
Often, caregivers report:
- Missing physician appointments
- Ignoring their own health problems
- Not eating a healthy diet for lack of time
- Overusing tobacco and alcohol when they are stressed
- Giving up exercise habits for lack of time
- Losing sleep
- Losing connections with friends for lack of time to socialize
- Holding in feelings of anger and frustration and then being surprised by outbursts directed at the care recipient, other family members, co- workers and strangers
Other signs to look for include:
- Feeling sad, down, depressed or hopeless
- Loss of energy
- Lack interest in things that used to give you pleasure
- Feeling resentful toward the older adult in your care
- Feeling that people ask more of you than they should
- Feeling like caregiving has affected family relationships in a negative way
- Feeling annoyed by other family members who don't help and criticize your care
- Feeling upset by arguments with others about your situation
If you or someone you know is experiencing the signs and symptoms listed above, consider talking with a qualified family therapist who can help you evaluate your situation.
Family therapists are aware of the latest research that demonstrates that strong and satisfying relationships with others can:
- Reduce caregiver stress and depression
- Reduce health risks of caregiving
- Increase satisfaction with caregiving
Family therapists will work to tailor treatment to the unique concerns of the family and are skillful in helping families become more knowledgeable about the effects of chronic illness on the family. Family therapists are comfortable working with large groups and know how to manage conflict and improve communication among family members. They can skillfully address painful issues from the past; increase family involvement in caregiving; link families to community resources; help families deal with grief, and find meaning in dealing well with loss.
When consulting a family therapist, you can expect certain things to happen. Therapists will want to understand more about how each person in the family is affected by the current situation. Typically, family meetings are held to talk about caregiving roles and responsibilities. Therapists are skilled at creating a safe environment for the discussion of difficult topics. They also understand that people see situations differently and have strong feelings about what should happen. Family therapists are very good at identifying people's unique strengths and helping them contribute to caregiving in ways that are comfortable for them. Older adults should expect to be involved in care planning and have their values guide problem-solving.
Consulting with a family therapist can result in a practical and workable plan for caregiving. Workable arrangements reflect the planning and involvement of many family members and do not overburden one family caregiver to the point where the quality of care suffers or the health of the caregiver is jeopardized.
Text written by Denise E. Flori, PhD, LMFT.