Caregiving

3/11/2024 | By Terri L. Jones

Family and friends who take care of a loved one on a long-term basis often suffer from caregiver guilt. Seniors Guide writer Terri L. Jones uses firsthand experiences to offer ways to combat guilt and improve well-being for all involved.

Linda has been caring for her husband, Tom, for four years now. He has vascular dementia, and she is there for him 24/7 – from helping him dress and dispensing his many medications to sometimes bearing the brunt of his frustration and anger over how much his life has changed. Even though Linda knows she’s doing her best, some days she still experiences guilt about how she’s handling things, especially those times when nothing she says or does can pierce through her husband’s darkness.

“I feel like it’s my responsibility to keep him motivated, keep him engaged, and keep him happy, and that’s very, very hard sometimes when someone doesn’t want to be motivated or is in a state of gloom and doom,” Linda explains. “Sometimes I beat myself up thinking, ‘What can I do?’”

Unrealistic self-expectations

It’s hard to imagine how someone who is performing one of the most selfless jobs out there can feel guilty, but most caregivers do. “Guilt occurs frequently because caregivers’ self-expectations are often unrealistic and usually cannot be successfully met,” reports “Choosing Therapy,” a publisher of mental health content.

These self-expectations run the gamut – from the quality of care you are providing to how much time you are spending on yourself to how well you are maintaining your other relationships. Guilt can also stem from resenting the heavy load you are carrying and those who aren’t helping bear that load.

Whatever the source, caregiver guilt can be very detrimental, negatively impacting not only your own physical and emotional health but also the care you provide. The professionals advise that you acknowledge these crippling feelings and try to resolve them.

For Linda, talking to her therapist has helped her manage her feelings of helplessness over her husband’s dark moods. When it feels like she should be doing more, her therapist reminds her that she is not responsible for her husband’s happiness. Those gentle reminders help Linda keep her self-expectations grounded and realistic.

Fulfilling your own needs, too

Tommie moved to Washington state from her home in Virginia to care for her father. He has severe congestive heart failure and macular degeneration and is a fall risk. Tommie’s main motivation for moving in with her dad was to look out for his safety. Therefore, when she wants to take time for herself, she feels guilty about leaving him alone.

But Tommie’s guilt over leaving her father by himself isn’t just about his safety. “Even though Dad nods off a lot during the day, there’s still a matter of when anyone is alone, some loneliness can creep in,” she says. “Just having someone in the house makes him feel better.”

One way that she’s found to see her friends – without the guilt – is to invite them over for a visit. “That way, I don’t have to leave, they [her friends] get to see Dad, and we spend time together,” explains Tommie.

Related: Tips to Help Caregivers Maintain Their Well-Being

Relinquishing care

While caring for her mom, Beth and her dad would struggle to get her to bathe, take her medications, or get ready for bed. These conflicts would lead to frustration, which would invariably leave them feeling guilty. Eventually, they moved her to a memory care facility in Lynchburg – but that change made them feel like they had given up on her.

Ultimately, however, Beth and her dad realized that this shift in caregiving responsibilities had actually improved the relationship. “We now were not the caregivers,” says Beth, who is also a certified independent dementia consultant. “She saw us as the good people and wasn’t as angry at us.”

Five ways to rise above caregiver guilt

Try these strategies to manage harmful feelings of caregiver guilt.

  1. Resist comparisons. Comparing yourself to other caregivers will generally leave you feeling inferior and guilty. Remember that every situation is different, that others tend to accentuate the positive and minimize the negative, and that it’s unfair to you and your loved one to make an apples-to-oranges comparison.
  2. Don’t take it personally. Sometimes a loved one will call you names or make accusations. While you rationally know that it’s just their illness talking, you may still feel guilty, especially if you see a kernel of truth in what they’re saying. Learn to let these negative outbursts roll off your back or talk to someone, such as a friend or therapist, who can help you see how baseless and damaging such insults are.
  3. Round out your life. When your whole life revolves around caregiving, any mistakes you make will consume you. It’s important to find a balance between your caregiving role and other parts of your life, such as hobbies, pastimes, and time spent with friends and family. That way your life is more well-rounded and your missteps as a caregiver won’t have the same tendency to bring you down.
  4. Find the joy. Carve out time to talk, laugh, and reminisce with your loved one and enjoy simple experiences together, like listening to favorite music or watching a beautiful sunset. This quality time will build the positive and leave less room for negative emotions.
  5. Seek help. As a caregiver, you’ll have times when you run out of steam and be unable to give your loved one the proper care. This can elicit feelings of shame and guilt. The solution – to ask for help – seems pretty simple, but so often caregivers have difficulty doing this, also because of guilt. It’s a no-win situation! Just remember that accepting support, from friends or professionals, enables you to recharge your batteries and ultimately results in better care for your loved one.

Above all, always give yourself grace. You are human and will make mistakes and wrong choices. When that happens, instead of focusing on what you’ve done wrong, focus on the many things you’ve done right. And remember that you’re doing your best, and no one – not even you – can expect more than that!

Related: Coping with Distressing Dementia-Related Behaviors

Terri L. Jones

Terri L. Jones has been writing educational and informative topics for the senior industry for over 10 years, and is a frequent and longtime contributor to Seniors Guide.

Terri Jones