Caregiving: The Pain, The Blessings

January 2017

Ellen Debenport

Ellen Debenport

Ellen Debenport is author of Hell in the Hallway, Light at the Door, a book about the spiritual path through change and transition, and The Five Principles. She is a Unity minister in Texas. For more information, visit ellendebenport.com

The woman sat next to me, weeping with weariness and frustration. She was the full-time caregiver for her mother, who had Alzheimer’s disease, and she wasn’t sure she could take it anymore.

My heart ached for her. As a minister, it’s not unusual for someone to approach me with a problem that I have no idea how to solve. I don’t even know the right words to say.

So I asked those who read my blog, “What can I say to caregivers that won’t sound glib or dismissive? What is the most meaningful form of compassion they could receive to make their situation more bearable?”

Millions of people are taking care of parents or other relatives who have some form of dementia or debilitating illness—an estimated 40 million caregivers in the United States alone.

I was inundated with responses from caregivers, some howling in anguish. They said they want to do what’s best for a failing family member—usually a spouse or parent—but feel trapped and resentful. For some, their only hope for release is the merciful death of someone they love.

“I feel that I am held hostage, and I want it to be over!” one said.

What Does It Take?

The most common caregiver’s dilemma is the constant demands. Nights are as busy as days; like having a newborn who wakes every two hours. Decisions may be made in a fog of sleep deprivation. The requirements to handle details come from every direction, not only from the sick person. Pay the bills. Find the best medical resources. Juggle the personalities of health care workers. Do they come when they promised? Are they competent?

Some caregivers also have jobs and children. Family caregiving requires the skills of a project manager or logistics expert.

Add to this:

The hopelessness. One woman said it hurts to see her handsome, macho husband so thin now, struggling to walk. Another, whose husband is sinking into Alzheimer’s, said, “For me, the greatest challenge is knowing that today will be the best it ever is. What he could do or who he could remember yesterday may not be the same today. And there will be less available tomorrow.”

The loneliness. The person they love is still present physically but may not be there mentally or emotionally. One woman said she longs for adult conversation. Another, whose husband was knocked flat by illness, said she is “touch deprived.” He simply is not available.

The guilt. It hurts to love someone but not to like them sometimes—to wake up dreading another day. Interestingly, all the responses came from women, and many of them apologized for whining or self-pity. They beat themselves up for not feeling loving and cheerful every minute.

Several mentioned how their own health declined while caring for someone else. And how detached they became from their own lives.

“Since my parent passed, I can finally breathe but have forgotten how,” one said.

How Can We Help?

“Actions speak louder than words,” one woman said. Saying how brave the caregiver is, or how much you admire her, sounds empty.

If you want to help, they said, show up! Offer to sit with the patient for a few hours. Or take the patient out, if they are able to go, even if the conversation won’t be normal.

Most of all, listen compassionately to the caregiver. You’re not there to give advice or fix problems. Just acknowledge the difficulty. The caregivers want to be seen and understood in their struggles.

“The mere fact that one can hear the sorrow, see the hopelessness, understand the guilt, forgive the resentment, and be present with the loneliness is sometimes the most precious thing we can offer,” said a psychiatric nurse practitioner.

So what gets them through? What gives meaning to this grueling experience?

“I have described the role of caregiver as entering a domain where the only visible signs say NO EXIT,” one woman said. “Then there is the other part of me that is trying to teach me the blessing of surrender, as a gift, a pathway to sanity.”

Is There a Blessing?

The best self-care seems to be spiritual, such as prayer and meditation, journaling, and watching for daily blessings.

“The blessing?” wrote another. “For the first time in my life, I felt unconditional love from my mother, for myself. For the first time in my life, I had patience with myself and others. For the first time in my life, I learned, but more importantly felt compassion.

“I do feel it is necessary for us, as caregivers, to give thanks for this opportunity to make this trip with our loved ones. Not everyone gets this experience. Letting them know they are loved in every way is showing them God’s love.”

And what can we say to caregivers?

“For me ... Don’t say sorry,” wrote a woman who cared for her mother, then her husband.

Instead, she suggested: “What a blessing! That is, how much you will be able to learn, how you have a chance to be present in a different way each day, how much you can open your heart to let all the love you have inside shine.

“God has allowed you a very sacred opportunity and chose you, right now, this way, to be of service. Rest in that knowing. And by the way, always know that my prayers and thoughts are with you.”