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How much should we do to help our loved ones?

by Carol Bradley Bursack, Editor-in-Chief

We someone we love must struggle to complete a task, it's normal to want to jump in and help make it easier. Often that is the right response. However, when a person must learn to cope with a debilitating disease or just the regular aging process, there are times when loved ones may need to step back and let them struggle. It we do too much too soon, we can inadvertently take away their will to do for themselves, along with some of their dignity.

I recently received an email from a distraught husband who was watching his wife decline with Alzheimer's disease.

He asked me, "Can we care too much?"

That question took me back to some caregiver guilt of my own. One reason I share many personal stories with readers is so they can learn from my mistakes. I was an obsessed caregiver who tried to make a lot of the hard reality "go away" for my loved ones. I feel I was right much of the time. However, there were times when I should have stepped back and let them struggle a bit more, just so they could have the satisfaction of doing a task for themselves even if the result was imperfect or time consuming.

I occasionally think back on my own grandmother, who was crippled young from aggressive rheumatoid arthritis, standing at our kitchen sink doing breakfast dishes with her twisted, dysfunctional hands. She lived with my family during her last decade of life. My parents built a house that offered her privacy along with the choice of joining the family when she chose. Grandma wanted to contribute to the household, so she took on a few simple chores for herself.

What a brave woman she was! In those days there was little that could be done, besides ordinary aspirin, for the excruciating pain she suffered. She was slow moving and her painful hands, curled in upon themselves, made grasping any object difficult. She wore extra large shoes because nothing could touch her joints without inflicting severe pain. Yet, she felt she needed tasks to complete in order to preserve some of her dignity. My parents understood that.

My Turn as a Family Caregiver

By the time I became the family caregiver, I was juggling many elders at once, as well as a child with multiple, severe health problems. I'm afraid that there were times when I did things for people because letting them do it for themselves was too painful for me to watch, and frankly, I could do the task faster. I was always in a time crunch, so this approach was tempting.

I like to think those times were the exception. But hindsight is, as they say, 20/20. I know, now, that there are things I would have handled differently if I'd had more knowledge.

In my answer to this gentleman who wrote to me, I advised him to let his wife do as much as she can. If he has to repeatedly show her how to do something, well, that's just how it is. However, if her frustration seems to exceed the good it is doing for her to complete a task, then it is time to step in and quietly complete it himself.

Watching the body language of a person with dementia is incredibly important. A caregiver who is tuned in can generally sense when the person's frustration level is such that they need help. I congratulated this man for his awareness that this could be an issue and his willingness to get educated. I also congratulated him for his loving heart. He wants to do the right thing. He won't always succeed. But his best efforts will take him a long way.

This is not so much an issue of caring too much as it is one of knowing when to endure the struggle of a loved one and when to offer help. This is a delicate balance that caregivers will never get right every time.