How false guilt can be a burden to caregivers and patients alike

Shouldering the weight of Alzheimer’s disease is difficult enough without the added burden of guilt. That burden is oppressive, and it’s too often present when navigating Alzheimer’s and other dementias. Caregivers may feel guilt, but so can patients just after diagnosis or in the early stages of the disease. But feelings and emotions are often unreliable, and in these cases, the guilt is usually invalid.

If you have mild cognitive impairment or just learned you have Alzheimer’s, please accept that the disease hasn’t singled you out because of some personal fault. Yes, risk factors can lead to the disease, and some health professionals tout ways to lower the risk. But even if you’ve taken every precaution, there’s always a chance a dementia can rear its ugly head anyway.

It did in my family. My mother took care of herself. She exercised regularly, physically and mentally. She ate healthy food, maintained her weight, and stayed active. However, all of that didn’t stop the disease from finding her.

Recommended Reading

June 11, 2019 Columns by Niko Mann

My Guilt Was Endless as My Mom’s Disease Progressed

For the most part, my mother was physically strong throughout her time with Alzheimer’s. She could walk, get in and out of bed, and more. Yet she and our family were forced to navigate the disease.

If you didn’t dot each “i” and cross every “t” before your diagnosis, please don’t allow guilt to get the best of you. Just start now to care for yourself anew. Follow your health provider’s directives, take the prescribed medicines, and live your best life possible.

The caregivers’ burden

Perhaps you can compare your sense of guilt with its definitions in the Merriam-Webster Dictionary:

“1: the fact of having committed a breach of conduct especially violating law and involving a penalty … 2a: the state of one who has committed an offense especially consciously … 2b: feelings of deserving blame especially for imagined offenses or from a sense of inadequacy: self-reproach 3: a feeling of deserving blame for offenses.”

The above definitions didn’t apply to my caregiving journey, but I still often felt guilty — even though I did my best to provide loving care for my mother. I learned that what I’d felt, and what I sometimes still feel, is instead false guilt. I loved my mother dearly and never consciously committed an offense.

Why did I combat false guilt? Why do I still? Why do you?

My sister and I worked together to care for our mother, and she was a sweetheart. Though caregiving is demanding, our mother wasn’t. She was kind, which is one of the reasons I might feel guilty. Even though she had Alzheimer’s and the caregiving tasks we faced were taxing, she herself wasn’t problematic.

Perhaps caregivers feel guilty because we’re imperfect. I felt impatient at times, for instance. Often this feeling was internal, but sometimes it became overt. I remember each instance when I lost patience. We spent many wonderful and good hours together, my mother and I, but my mind more readily brings up the fleeting moments when I feel I failed.

During my quiet hours, when those memories flood my mind, I retreat to the words my mother spoke on a challenging day. I’d been less than patient with her and apologized. She responded, “Well, I don’t know what you’re talking about.” Alzheimer’s disease didn’t prompt her response; she perfectly understood my apology and forgave me.

Sometimes, in a moment of clarity, our mother would address me or my sister with comforting words: “I don’t know what I’d do without you. You take such good care of me.”

I’d prefer to remember those moments over my missteps, so I pray to get past the false guilt and remember and accept that we did our best. No one loved our mother more than we did. We put forth our best effort to care for her in the manner she deserved.

Focus on your intention

Caregiving is a season, often a long one. Of course, there are challenges in it that try patience. Maybe failure is part of the process, but striving to improve makes a difference.

Like medical personnel, caregivers should vow to do no harm and act with “integrity, humility, honesty, and compassion.”

Above all, we must differentiate between true and false guilt.

If you’re committing an offense against your loved one, specifically verbal or physical, stop now and seek help. The guilt incurred in such cases isn’t false. But avoid false guilt that plagues us for simply being human.

It’s a struggle, but maybe like me, you can try to focus on “whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report” (Philippians 4:8, New King James Version).