If dementia is a thief, guilt is an accomplice.
My wife Linda’s disease stole years of our marriage until she was wholly dependent on a team of professionals in an assisted living facility. But caregiver guilt began to haunt me on the day we got her diagnosis.
A New York neurologist told us her symptoms—difficulty in writing and speaking—were consistent with a rare dementia. My hand-written notes from that meeting in the doctor’s cramped office were as jumbled as the thoughts in my mind. Long black lines slashed across the page, connecting medical words I didn’t understand, including the name of her disorder, “primary progressive aphasia.” A circle surrounded bold capital letters, “CAN’T KNOW.” That meant no one could be certain about how Linda’s disease would play out. But it was clear she would eventually need full-time help, possibly for the rest of her life.
I was numb, vulnerable, prey to guilt. Why aren’t you crying? Why do you keep taking notes as if you’re a reporter? What sort of husband are you?
For more than a year after that day, I put up a front with friends and family, assuring them that I was invincible.
But in the seven years of living at home with dementia, guilt lay in wait in the back of my brain, and regularly awakened me before dawn. I’m frustrated that she can’t understand me, and I can’t hide it and it hurts her…. I know I should blame the disease, but it’s hard to love her when she screams at me…. Some days all I can think about is how I want to get out of here…. When will this be over?
Sadness sapped away my spirit and strength. I lost weight and slipped into depression.
Research within the past few years indicates that depression itself spawns guilt. It’s linked with the risks of cardiovascular disease, diabetes and even dementia. The shadow of guilt probably hung even more over my three grown children, the research suggests. Many adult offspring of people with dementia are vulnerable to a double load of self-blame about tending the needs of their parents.
Mom wants me to visit her more often, but I can’t, or to be honest, it’s really hard to see her…. Other parents give more time to their children…. My boss says I’m distracted, less efficient.
I myself carry a residue of regret even today, years after Linda entered long-term care away from home. But I’ve learned to recognize it, remain committed to her wellbeing at a distance, and do what I can to stay healthy and strong myself as I think Linda would have wanted.
Here’s what my family has learned about dealing with caregiver guilt.
1. Talk about it. Telling someone close to you how you feel is a way to weaken guilt’s potency by forcing unspeakably dark secrets into the light of loving conversation.
2. Seek professional help if feelings of guilt or worthlessness are accompanied by other common symptoms of depression such as sleep or eating problems, fatigue or thoughts of suicide.
3. Find messages in your guilt. Use a judo principle to turn the power of self- sabotage against itself. I feel awful about taking respite time for myself could signal that you’re overdue for R&R.
4. Keep a journal or diary. Guilt can distort self-awareness. Occasional notes to yourself can remind you of the hard work you’ve done, and the best-you-can-do care you’ve provided. Write about feelings as well as challenges—guilt, gratitude, sadness, relief. Every month or so, read or skim what you’ve written to understand how the burden of caregiving changes over time.
5. Learn from others about common sources of guilt and how they have juggled the multiple tasks of caring for someone they love.
No one gets convicted in a court of law for unexpressed thoughts alone. But many caregivers show no mercy to themselves for their human limitations. If you’re one of them, ask yourself: What good does such guilt do for you and the people who need you?
This article first appeared on MariaShriver.com.
About the Author
Gurney Williams is the father of Kimberly Williams-Paisley, actress and author of the New York Times best-selling book, Where the Light Gets In. It’s the story of how her family met the demands of her mother’s dementia.
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