Addressing Caregiver Guilt
For many caregivers, a dementia diagnosis in the family takes a toll on their life. Feelings of stress, burnout and guilt each come with caring for a loved one with dementia.
Each of these feelings correlates in the caregiver role, and a local support group will address guilt at 5:30 p.m. Dec. 6 at The Glen Retirement System with a discussion led by Leigh Peregoy.
As a licensed clinical social worker, Peregoy has owned a private practice in Bossier City for 14 years and has helped many families through a number of issues. Though grief is her specialty, she also has an interest in assisting caregivers in navigating through their feelings.
“The people who provide the most care to others often feel intense guilt. There is an old saying: ‘Scratch guilt, and you will find resentment.’ When we are depleted of energy, tired and lacking restorative sleep, a person can become frustrated and angry. That person may say or do something that they would not have usually done. Or, one may perceive one’s self as being neglective of the one being cared for,” she said.
“Over the years as a private counselor and working with grievers in a group setting, I have heard many people say, ‘If only I …’ ‘I should have …’ We call this the coulda, woulda, shoulda’s. This type of thinking leads to guilt. [Many say,] ‘If only I had have insisted my husband go to the doctor sooner,’ or ‘I should have done more to help save his/ her life.’ But, when a person is in the midst of a crisis, again being stressed out, he or she cannot always problem-solve or think things out logically,” Peregoy said. “When one perceives that a different outcome could have happened and did not, it must be the fault of the person caregiving. This is like parents who lose a child will feel guilty because a parent’s role is to keep the children safe. When that does not happen, the parent feels guilty.”
Guilt can also take a physical toll on a caregiver if it is not dealt with effectively, Peregoy said.
“Guilt is a normal reaction when something happens, and you could not control it. Continuous, unrelenting, difficult caregiving does take a tremendous toll on a person,” she said. “Burnout in and of itself does not sneak up over a short period of time. It is a buildup of caretaking, not getting relief, feeling that one is all alone, is isolated, and has reached the point of not pulling one’s self out of it. That is when burnout happens. And it can happen to any of us. But, the person that becomes burned out sees it as a character flaw. ‘I should have been stronger!’ ‘My mother took care of her husband and did not fall apart. That must mean I am weak.’ We are also afraid to not measure up.”
Along the lines of feeling inadequate, guilt can take a physical toll on a caregiver. Peregoy recommends caregivers also consider their own care.
“Start with the basics. Get restorative sleep (when you can). Do light exercise to release tension and pump the blood to your brain. Feed your body and your brain with the nutrients needed to thrive. Realize that caregiving is a lonely job. Take time to be with others if and when you can. Ask for help. If no one volunteers to help, ask others in the family to contribute money to hire relief help. Find a caregiver support group. There are many online if the person does not feel they have the time to leave. However, do leave when you can,” she said.
“Talk to your family doctor. Discuss the thoughts and feelings you are having. Ask about temporary help from the right medications. Some [assisted living facilities and] nursing homes will provide respite care for a weekend or a few days. Usually, hospice companies have the resources to lead you in the right direction. Know what help is available,” she said.
Peregoy said many caregivers feel comfort in a support group setting. She encourages caregivers to reach out and find people dealing with similar conflicts.
Peregoy understands caring for a loved one with a dementia-related illness is difficult.
“Not everyone is built to be a caregiver. If one cannot do it, there can be alternatives,” Peregoy said. “When my husband’s siblings could not be there to take care of mom, they were asked to contribute money.”
For nearly three years, Peregoy has been a presenter at The Glen’s caregivers support group, discussing topics from caregiver stress to conflict resolution.
“Most of our group members thoroughly enjoy hearing Leigh speak. She understands their perspective and offers a wealth of knowledge and insight,” Lydia Earhart, director of marketing and community relations, said. Earhart also is the support group leader at The Glen.
“Our group pairs support with information providing resources, knowledge and insightful measures to assist caregivers, Since 2001, The Glen has offered the caregiver support group to the community at large. “We know there is no guide that comes with dementia,” Earhart said. “We have seen so many benefit from our group, and we continue to welcome new caregivers in at each meeting. If you are a caregiver, do something for yourself and reach out to us and hear from Leigh and other caregivers. It will help.”
Want to go?
The next meeting, titled “Caregiver Guilt,” begins at 5:30 p.m. Dec. 6 in Harrell Library. For more information, contact Earhart at 798-3500 or email firstname.lastname@example.org.