Thread: Caregivers After Nursing Home Placement

Caregivers After Nursing Home Placement

By Christine Haran
Caring for a person with dementia is hard work. Not only are caregivers watching a loved one decline, they are bathing them, feeding them and otherwise meeting their personal needs. While a long-term care facility may be a good solution for an exhausted caregiver, new research suggests that the depression and anxiety associated with caring for a relative with dementia does not ease up after caregivers place their relative in a nursing home or other long-term care facility.

"We expected that since much of the stress of caregiving, particularly for dementia patients, has to do with the hard work of providing care and being vigilant, sometimes 24 hours a day, we would see some recovery among caregivers when these stressors were removed, but we didn?t see this." says lead author Richard Schulz, PhD, a professor of psychiatry at the University of Pittsburgh School of Medicine.

The study, published in the August 25th issue of The Journal the American Medical Association (JAMA), was part of a larger four-year study involving 1,222 pairs of caregivers and patients with Alzheimer?s disease. Previously, researchers reported that caregivers whose relatives passed away recovered remarkably well. In this study, the investigators looked at the health and well being of 180 caregivers during the in-home experience and after they placed their relatives in a nursing home. After following these participants for 18 months, they found that those who institutionalized their relatives were just as depressed and anxious after placement as they were when they were in-home caregivers.


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." Dr. 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." Dr. 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. And because 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." Dr. Schulz says.

Hi
Thank god I found this posting,I did not understand why I was feeling the way I was.The guilt I still have is still overwhelming GUILT after placing my dad in a nursing home 7 months ago.He suffered a stroke last december and was doing great after rehab,he came to live with me and started going downhill,his mental health(dementa) was getting worse.I never expected a downfall.I thought that it would be uphill the whole way.I live in N.H and I drive to Boston every week to see him.The visits are not pleasant at times,he is angry that he is there and he wants me too take him home with me.It is so hard to say no I cannot take you.Yesterday was an awful visit,he wanted out.I do not have any family to take over and give me a break.Honestly,I do not want to even go there every week anymore,it kills me emotionally to have to see him that way.But my father is everything to me,and I feel I should do all I can for him.But with the advise you gave above,about suppot groups and counciling and learnning about nusrsing care I NEED THAT..I have to learn to let go in a way and focus on my family now.It is so hard to do.I dont know where to start.any suggestions?
Thank you
Debbie