I sometimes feel guilty as a caregiver. Is that normal?

By, Nicole Ruggiano, PhD, MSW

Caregiving is hard. It can be hard, physically and mentally. For many caregivers, this results in a mix of emotions from day to day. Even though it's challenging, caregivers often feel good about being able to provide care for their loved one. However, sometimes caregivers also feel guilty.

​Take Kim*, a 30-year old caregiver in in Birmingham, who talked about her experience with guilty feelings during an interview for one of our projects:

Sometimes I feel like I’m not doing enough, but I don't know what else I can do. Then there’s the guilt. I think I have a lot of guilt about not recognizing more of my Dad's symptoms in the beginning. Even now, I think there’s a little bit of guilt that’s just surrounding the diagnosis itself. You’re watching somebody really decline. It could be two days, it could be another 10 years. 

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What are some things that caregivers report feeling guilty about?

• That their loved one has dementia.
• That they find caregiving stressful.
• That they don't have more patience with their loved one. 
• That they aren't doing enough for their loved one.
• That they should have talked to a doctor sooner about their loved one's symptoms. 
• That they aren't sure if they are making the right decisions about their loved one's health and care. 
• That they don't know enough about dementia or caregiving. 

If you find yourself having similar thoughts and feelings, it's normal. There are ways to cope with caregiver guilt, though the first step in doing so is to admit that you are having guilty feelings. Once you accept that you are experiencing caregiver guilt, ask yourself the following questions:

What is causing my feelings of guilt?

Feelings of guilt often are a symptom of other thoughts or feelings. If you can identify the source of guilt, you can find ways of dealing with them. For example, let's say that your feelings of guilt are due resentment about how taking care of your parent or spouse has changed your lifestyle.

• Are there positive aspects of the situation you can remind yourself of? For instance, being able to care for your loved one at home and make changes to your lifestyle may be keeping your loved one out of a nursing home. 
• Can you make adjustments to your lifestyle to enjoy more things you used to do before dementia impacted your life? Are there adjustments you can make to your work schedule to make work-life balance easier?

Am I giving myself grace?

If someone else was in your situation and asked you for advice, what would you tell them? Surely, you wouldn't tell them to do nothing and continue to experience their guilt. Be compassionate and kind to yourself. Imagine what you would tell another caregiver and try and follow your own advice. 

Am I able to ask others for help?

I once interviewed a stressed and tired caregiver in Pickens County who had adult children living near by, but she felt like asking them to help care for their Dad would be an imposition to them. There were several things that she didn't consider about the situation:

• Her children may feel their own guilt if they knew that their mother was suffering in silence struggling with care. 
• There may be small ways they can help that could make a huge different. For instance, if she asked each of her three children to come one day a week to stay with their Dad for an hour or two while she went grocery shopping or to church activities, that's up to 6 hours she can focus on herself. 
• If her stress worsens and caused her to have a stroke or heart attack, her children would have to take on a much larger burden of caregiving. 

Sometimes, family members may offer to help, but never follow-up on their offers. You may have more success if you ask for support with specific tasks. Can your brother or sister stay with your mom for an hour every other Tuesday? Can your husband's sister stay with your husband one week every year so you can take a vacation at the beach with friends?

Do I think it's shameful to pay for help?

There may be agencies in your community that offer respite or adult day services. Research shows that caregivers experience huge benefits from using these services, though they often resist using them. Hiring respite care may benefit you, but it may also give you more patience and energy to care for your loved one. If money is an issue, find out in a church in your community offers respite programs free of charge. 

Is a caregiver support group right for me?

Research shows that participating in a support group can reduce depression and improve caregivers' confidence in providing care. Caregivers can talk to others who are going through the same thing they are. They can also learn from each other strategies that may make caregiving easier. In many cases, caregiver support programs may have a separate supervised room where you loved one can stay while you participate in the group. 

Do I think I'm the only one who can provide good care?

Being the main person who provides care to your loved one, you most likely have your own routine and ways to provide care. For instance, you may know that turning the lights down a bit when trying to bathe your mother keeps her calm during bathing. Understandably, you may be anxious to have others care for your loved one because they may not do things the same way you do. 

First, consider writing down your loved one's preferences during care activities. Does playing music later in the day help keep your wife from getting agitated? Those may be good tips to help someone who is filling in for you. However, also recognize that while someone else may care for your loved one differently, that doesn't mean it is the "wrong" way or will result in disaster. 

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You may be saying to yourself, "It's easy to give this advice when it's not you." It's true that these suggestions are not easy changes to make. However, caregiving is kind of like the emergency instructions they provide on airplanes: You need to care for yourself before attending to others. Staying healthy will help you continue your ability to provide care to your loved one. Take it easy on yourself. 

​*We change the names and some details about caregivers to protect their identity. ​

Have you dealt with caregiver guilt? Post a comment to help other families dealing with dementia.