Caregiving Support Systems

A health crisis in the life of your aging loved one is a stressor that can put the whole family on alert. Your relationships with other family members can be severely strained as emotions run high and fears or resentments build. But ideally, a crisis that is properly handled will draw your family closer together to support your ailing elder.

This is not an easy task. There will be decisions to make and duties to divide. You may need to referee disagreements and identify unfair workloads. Outside expertise or counseling may be needed if discussions are too volatile or the issues regarding your elder are particularly complex. But the more prepared you are to handle a crisis when it occurs, the more successful you will be in resolving it.

Family caregiving

As the aging population grows, the ranks of family caregivers are swelling. One out of four U.S. households care for a sick or disabled loved one who is age 50 or older. Although there is usually one primary caregiver, the context of family siblings, spouses, children and extended relatives provides a built-in network of partners for caregiving. This family network can offer emotional support and a kind of backup system, as well as the security of knowing that if something should happen to you, your aging loved one will not be left alone. Sharing a strong sense of family is a powerful motivator to share the caregiving responsibilities for elderly loved ones.

On the other hand, the stability of the family as a whole is affected by changes or disturbances among its members. In times of crisis, you need all the support you can get. But where do you find support when your aging loved one is incapacitated and your own siblings or immediate family members are in the vortex of the tempest with you? The time-consuming tasks, tough decisions, and caregiving arrangements for which typical caregivers are responsible can strain and drain the most loving of families, both emotionally and financially. Feelings of guilt, frustration and resentment are common when the demands of caregiving are prolonged and family members disagree about caregiving decisions.

Those caring for someone with dementia are more likely than other caregivers to have less time for other family members or leisure activities. In many situations, it seems one person does all the work and may feel tired, stressed, put-upon and unappreciated (despite the fact that she is more than willing to care for her aging loved one). The other family members that are not serving as primary caregiver may feel left out, ignored and guilty for not doing more. Some extended members prefer to stay out of the picture entirely, except to hear how their elder is doing. This can cause problems both with the family members and the elder and among the family members themselves.

Caregivers who are single or without siblings encounter less family interference, but they tend to feel overburdened and intensely lonely in the caregiving role. Caregiving daughters and sons who have no children of their own are sometimes plagued by uncertainty: When I'm old, who will take care of me?

To protect yourself and your loved ones, it may be helpful to expand your circle of support to include friends, neighbors, clergy, volunteers and other professionals. You should not feel guilty because you cannot do everything. Be willing to delegate tasks and to turn to community programs and professional resources for help. Have discussions with your family and other supporters at the start of any acute situation in order to establish roles and responsibilities. Fostering good communication and solidarity will help keep finger pointing to a minimum when it comes time to make life-changing decisions for your loved one.

The role of the spouse

If you have a supportive spouse, you have someone who will listen and sympathize with your elder care problems a gift in itself even if he or she does not share in the hands-on care. Having a spouse also provides you with someone who can share in the decision making. However, spouses of caregivers may tire of the lifestyle restrictions disruptions to vacation and travel plans, constraints on the family budget, increased household chores and less time spent with each other and the children.

When Christine's aging mother lived with her family, it began to impact Christine's marriage. It helped build strength to depend on one another. "Sometimes my husband would say, 'Go to bed. I'll take care of your mom,' " Christine recalls. However, caregiving had a negative effect on intimacy. "My husband put up with my absence a lot when Mom was in and out of the hospital, because we weren't really connected a lot physically," says Christine. "But you have to work with each other and support one another. This is part of life."

Children will reduce or add stress

Children in caregiving households are often silent witnesses to changing family dynamics. As children get older, they often become part of a caregiving backup system, both emotionally and practically. They can sense the importance of sacrifices made to care for grandparents or older relatives. They frequently are able to develop a special relationship with the older person, even if the aging adult has some form of brain deterioration. One family's teenage son voluntarily came home from high school each day to have lunch with his grandma, who was becoming forgetful. He enjoyed joking with her and was glad he could keep an eye on her in the kitchen.

When children and adults share a household with an aging loved one, the potential for love increases with each additional family member. However, so does the possibility of interpersonal conflict. Children's social lives might be disrupted and their personal freedom restricted. They might feel uncomfortable bringing friends home. Parents find themselves mediating conflicts between the children and their aging loved one, especially when the elder's health is critical. Caregivers who are pulled in both directions by the demands of their elder and their children often feel restless, isolated, and depressed. As a caregiver, your desire to meet everyone's needs and set a good example of elder care for your children can contribute to the pressure you feel.

Whose needs come first?

At times it will be the needs of an aging loved one who is coping with a health concern. At other times, the emotional state of a teenager will come into focus. A spouse's needs may go underground for a period of time, only to resurface later on. Perhaps the quality of your family as a whole will take first priority. But your needs also matter. If you neglect your personal health, your ability to care for your aging loved ones will suffer too. Take catnaps when possible and get regular periods of respite (short-term relief from constant caregiving) to help revive you for the task at hand.

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