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Family caregivers often must confront their own feelings of guilt

Family caregivers often must confront their own feelings of guilt

Many caregivers often have a feeling of guilt that they can't do more to "fix things" for the person
Family caregivers often must confront their own feelings of guilt
Diane Van Dusen, left, manager of clinical dementia services at the Marjorie Doyle Rockwell Center in Cohoes, meets with Annmarie Ellis, a caregiver for a client.
Photographer: Bruce Squiers

COHOES — Guilt can overwhelm anyone occasionally, but its presence is commonplace among caregivers.

“It’s almost universal,” said Diane Van Dusen, manager of clinical dementia services for the Marjorie Doyle Rockwell Center, the Eddy’s regional Alzheimer’s center, in Cohoes. “I don’t think I’ve met a caregiver yet who hasn’t had some feelings of guilt. When we love someone, we have a tendency to want to fix things, and when we can’t, we feel like we failed. Then we feel guilty.”

Van Dusen will present a free, three-week program on “Caregiver Guilt,” from 5 to 6 p.m. beginning Wednesday at the center, 421 W. Columbia St.

The program will help nonprofessionals who are providing care for a family member or loved one with memory loss. The course will explore ways to cope with feelings of guilt that often arise when care giving becomes overwhelming.

For caregivers, painful feelings such as guilt, sadness, exhaustion, anger, or feeling overwhelmed, burned out and cheated out of your life, are common, and your body’s way of saying “pay attention,” said Van Dusen.

Caregiver guilt program

WHERE: Marjorie Doyle Rockwell Center, 421 W. Columbia St., Cohoes

WHEN: 5 to 6 p.m. June 11, 18, 25


MORE INFO: 238-4164

“People just kind of stuff those feelings away,” she added. “They feel bad about them. Some people even wish their loved one would pass away. They just want to be free of caregiving. Then they feel guilty for having those thoughts.”

Here are some tips for managing caregiver guilt:

-- Ask for help when it’s needed.

“When you’re feeling exhausted, when you don’t take care of yourself, you can’t take care of your loved one,” said Van Dusen. “As caregivers, you have to recognize your limitations. You can’t do everything perfectly.”

-- Prioritize your tasks. Let some things go.

“Household chores aren’t all that important,” said Van Dusen. “Do what you can and let the rest of it go. Be sure to take care of yourself.”

-- Attend a support group for caregivers.

“Being a caregiver can be very isolating,” said Van Dusen. “For most people, it comes down to, ‘I feel lousy. I’m tired all the time, and I don’t want to do this anymore.’ Communicating that with family or in a support group can be life-saving. You find that other people feel the same way. It’s a relief, and it gets you through another couple of weeks.”

-- Don’t beat yourself up if you have to place your loved one in a residential facility or nursing home.

“If you need to turn the care of your loved one over to professionals, you feel like you broke a promise, that you have failed or are lacking in some way. But sometimes their needs become too great, and you just can’t handle them anymore. People feel they are abandoning their loved one and they feel guilty for that.”

-- Learn to say no. “Caregivers are usually very giving people,” said Van Dusen. “They try to do it all. Maybe you are caring for a spouse or a parent and your kids have demands, and your grandkids have demands, and your neighbors have demands. Learn that it’s OK to say ‘no’ and look out for yourself.”

-- Maintain social contacts. “Go to the gym, take a walk, attend a support group, even if it means getting other people to come in and help you. And if you have placed your loved one in a residential facility, you don’t need to be there eight hours a day. They need to do their job, and your job is to take care of you.”

-- Seek professional help when necessary.

“If you are stuck feeling guilty, sad, depressed, there is no shame in seeking professional help,” said Van Dusen. “Some people need that individual one-on-one help to work through their healing. There is no shame in that. Care giving is a hard job.

-- Give yourself permission to make a mistake. “You are only human,” said Van Dusen. “Let go of the ‘should haves’ and ‘could haves.’ It’s not productive. Guilt gets in the way of your being able to enjoy being in the present moment with your loved one. When caring for someone with dementia, time is very precious.”

-- Reject guilt. “Guilt is something we feel when we have done something wrong,” said Van Dusen. “You are being pulled in a lot of directions, and you are going to get mad and feel like a failure. Don’t lay a guilt trip on yourself as well. You can accept guilt or reject it.”

-- Identify other feelings. “Feelings are feelings,” said VanDusen. “They just are. Acknowledge them. Recognize that you are doing the best you can and begin to process the grief, the denial, the anger, the guilt and the sadness that comes from being a caregiver.”

-- Be realistic. You’re not going to be perfect,” said Van Dusen. “You probably wouldn’t be perfect if your loved one wasn’t sick. We are not perfect beings. So get more realistic and try to feel good about the things that you do.”

“No family member receives training to be a caregiver,” Van Dusen stressed.

“You sort of learn as you go along, and it’s different for everybody,” she said. “But many people come out of this role as much stronger people.”

When negative feelings come up. Van Dusen advised taking a moment to step back and look at them.

“Like pain is a warning sign that something is wrong, those feelings may be warning signs that you may need some time off for a few days,” she explained.

Guilt is only justified if you did something wrong like denied your loved one food or stole money.

“If you are doing everything you can do, and it still doesn’t feel like enough, that’s not guilt,” said Van Dusen. “That’s being overwhelmed, and you need to take a look at that.”

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