Caregiver Insights

Dealing with Challenges

Unnecessary Guilt

Becoming a dementia or Alzheimer’s caregiver was never part of our life plan, and most of us are not well prepared for the consequences. As the illness progresses, our love, concern, and sadness grow for the person we care about. But as that person changes, those emotions are countered by increasing frustration with the disease and the behavioral changes it causes.

The resulting anxiety affects entire families. Attitudes, relationships, and expectations change. Decisions must be made that our loved ones will not agree with (e.g., taking away the car keys). To complicate matters, different family members may have conflicting opinions about how care should be administered. This fragile situation creates a rich breeding ground for guilt or anger.

Guilt is a feeling of remorse for real or imagined offenses. Among other things, it is triggered in caregivers by losing patience, unrealistic expectations, thinking we are devoting either too much or not enough of our time, or pining for a life outside of caregiving. Guilt is uncomfortable, and it can also contribute to burnout and depression. Fortunately, since guilt is self-imposed (something we unintentionally do to ourselves), we have the power to mitigate it.

Here are some suggestions for reducing guilt and improving our lives:

  1. The solution starts with awareness and understanding. Guilt is a common outcome for dementia caregivers because caregiving is such an incredibly difficult task. There are no ready solutions to the wide-ranging challenges. We are all human, and no matter how diligent we are, we will make some missteps. We must learn to accept this reality and not berate ourselves.

  2. Dementia is not a problem to be solved; it’s a condition to be managed. The outcome is beyond our control. As caregivers, we must adjust our expectations accordingly. Since perfection is not possible, it cannot be our goal. 

  3. Remember, our lives matter too. As the disease progresses our loved ones lose empathy and become less sensitive to the needs of others. But we should not forget that before they had the disease they would have been upset by the intense stress dementia would create for us. They would want us to be less burdened. Understanding this may make some of our difficult decisions a bit more palatable.

  4. Self-care improves our health and attitudes, while also reducing guilt and self-doubt. Self-care is not selfish – it’s essential.

  5. We should take pride in how we are approaching our responsibilities. Every act of care, patience, and love is meaningful. It benefits our loved one and reduces the threat of guilt. Giving of ourselves is therapy for ourselves.

  6. Interacting with other caregivers is a blessing and a key to maintaining a healthy perspective. When we attend dementia support groups and share ideas, we are inclined to tell others to not be hard on themselves. Given the challenges they face, they are doing the best that they can. We should accept the same advice for ourselves.

  7. We can’t be successful doing this alone, and we should avoid the isolation that fuels guilt. It is helpful get support from people who can periodically engage and care for our loved ones. This allows us to meet with friends, take breaks to rest, or pursue other interests. Breaks from caregiving are essential.

  8. If these suggestions don’t help, it is appropriate to seek professional help.

A last thought: Unless other people have first-hand knowledge about caregiving, any negative comments they may make about our caregiving journeys should carry little weight. How can they possibly know what it is like to deal with constant stress month after month with little sleep and no end in sight.

None of us is perfect, but we try our hardest. Caregiving is difficult enough without unnecessary guilt. You don’t deserve the extra burden. Ditch guilt.

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