Caregivers at Highest Risk
The transition to a nursing home was hardest for spouses, as opposed to the children of relatives in a nursing home. About half of the spouses tended to visit daily and continued to provide care, such as helping with eating and dressing. New stressors also cropped up, such as advocating for better care for the patient by working with the nursing home staff and administration. For some, the added burdens of traveling to the facility every day and the cost of care were additional stressors. Caregivers with inadequate support from friends and family also experienced more emotional turmoil, as did people who had found caregiving rewarding.
"When you look at at-home caregiving, people report that it’s highly burdensome but at the same time they’ll tell you that they get something positive out of it," Schulz says. The people who found the most meaning in caregiving and who were the most strongly attached to their relative had the most difficult transitions.
Predictably, guilt was also a problem. "There is a universal consensus that being institutionalized is something to be feared and dreaded, and family members don’t want to do it," Schulz says. "Spouses, in particular, feel that they’ve abandoned or failed their relatives in some way."
Coping with the Transition
The researchers concluded that caregivers need to be treated for their emotional distress with counseling, support groups and/or antidepressant and anti-anxiety mediation. They also need education about how nursing homes work, so that they can figure out a role for themselves, especially if they enjoyed providing direct care. Also since their relatives are likely to die in the nursing home, caregivers should work with the nursing home staff on end-of-life planning, which will help them later with the bereavement process.
"We tend to forget about caregivers after the person goes into a nursing home, but we need to make sure they are supported," Schulz says.
