Oliver: Things caregivers don't know cause stress, regrets

Joan Oliver
Joan Oliver

Most of us weren’t born with the idea that one day we would be a caregiver.

Sure, there are those who always knew they wanted to be a parent. Or the youngsters who found they had a knack for baby-sitting and the like.

There also are the wonderful people who become doctors and nurses and health care workers who make it their life’s work to take care of those who need it most.

Then there are people like me, who stumbled into the world of caregiving.

I knew that someday I would take in my elderly mother, but I never dreamed she would develop dementia and that my days would be filled with dealing with invisible “people.” Or that my beloved husband would be diagnosed with early onset Alzheimer’s disease, bringing different challenges.

To say that I was unprepared would be an understatement. Yet, I’m definitely not alone in this.

Reader Marion Anderson recently shared some thoughts on caregiving. She took care of her husband until his death a little over two years ago. She wasn’t prepared, either.

She explains: “I don’t regret one day that I took care of him. I just would have liked to have known how to be a caregiver. … Most caregivers are not trained for the job that has been put upon them. ‘I don’t know what to do’ runs through your mind. There are a lot of books on the subject, but everyone has different needs. Caregivers have a tough job.”

Marion brings up a good point. There are many books on the subject, although few of them comprehensive or exactly what is needed at the moment you need it. Still, they can be helpful as long as you make the time.

Another helpful resource has been the website of the Alzheimer’s Association. I consult it for tips on issues that come up. It was invaluable when Tony was first diagnosed and for trying to figure out what was going on with my mother.

The Illinois chapter of the Alzheimer’s Association also conducts monthly online seminars and programs by phone that deal with issues related to dementias, whether it’s dealing with problem behavior, medications to treat dementias or paying for care. Some of the best information I’ve received has come from these. Some programs also can be accessed afterward online.

I was reminded about just how many things I don’t know when I recently was asked to brainstorm ideas for a group that was going to start meeting at a local library. My excitement was palpable – at last, someplace to go to learn all of these things and maybe help other struggling caregivers, too. I excitedly made up what turned out to be a very long list.

Unfortunately, I completely missed the point of the group. This was a group to help those with dementias. The caregivers would be there, too, but they weren’t the focus. My mistake.

Still, the need exists. The number of caregivers only will grow.

The information no doubt is out there. It’s just that we’re so busy trying to figure things out that we don’t find the time to look or know where to begin.

Not knowing what to do, or thinking that we didn’t do enough, is a heavy burden to bear.

“I just hope one day there will also be help for caregivers to understand what they can do to keep from thinking, ‘If I only knew how to handle more professionally the care needed for my loved one,’” Marion continued in her note. “So maybe what they did for their loved one would not have the guilt attached to their loss. Peace of mind would be great healing for the caregiver.”

I second that, Marion.

• Joan Oliver is a former Northwest Herald assistant news editor. She has been associated with the Northwest Herald since 1990. She can be reached at

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