If You Knew Then What You Know Now: Hindsight for Caregivers


They say hindsight is 20/20. If you could go back in time: what would you now as seasoned caregivers say to your novice self about how to be a caregiver?

As a seasoned caregiver of multiple elders, I can choose to torture myself with my perceived failures at being a perfect caregiver, or I can choose to forgive myself for being imperfect, and recognize that I did the best I could at the time. You have the same choice.

Much like an adult who realizes that he or she has a "wounded child" living inside – a child who suffers from unearned self-blame or low self-esteem because of life events – many adult caregivers carry the guilt from their "infant" caregiving years to their grave. They spend precious time thinking about how they should have understood someone's needs better, could have been more patient, would have done any number of things better, if only they knew then what they know now.

The very people who take on caregiving roles are often the most sensitive to other's needs. Many also tend to be overly sensitive in other ways. Let's face it. Whatever we do as caregivers seems to be wrong in the eyes of some lookers-on, generally people without all of the facts, and often people who couldn't do what we do no matter what. Still, we are sensitive to their judgment.

We can decide not to be bothered by criticism from the outside. The problem is, we often aren't aware that we are judging ourselves even more harshly than outsiders may judge us. This is particularly true in retrospect. We look back and beat ourselves up for slips, real or imagined, because we were novices and didn't know what we know now.

What tips would you give yourself if you were starting fresh? You'd do your research, of that I'm sure. Government websites such as the Administration on Aging, the National Institutes of Health, plus disease specific websites and support sites such as AgingCare.com, all offer a wealth of information. Also, you'd use your local resources for in person support. You'd call your community Alzheimer's organization, your Area Agency on Aging and watch for educational workshops. You'd take advantage of help that is available.

What Comfort Would You Give Your Novice Self?

You went into caregiving out of love and didn't have the education to cope with specific issues, so you made mistakes. Everyone makes mistakes. Move on.

Believe that if your care receiver could be the person he or she was before getting ill, you would be told, "job well done."

Remember precious moments rather than perceived mistakes. Remember the intimate times – times that remind you that you were fulfilling an important calling. Remember that you made a difference. Write yourself reminders of those rewarding times and read the notes when you start criticizing your earliest caregiving blunders – or even later ones.

Understand that imperfection is human, and your best was – and still is – good enough.

Please forgive the suffering caregiver inside of you as you would a friend. Again, I say you did your best given what you knew. Give that novice caregiver a spiritual hug, and a pass for being imperfect. If you do, you'll leave room for your brain to focus on loving moments with the people you took care of.

Move on from self-imposed blame and admire yourself for stepping into the difficult role of being a caregiver and seeing it through to the best of your ability. What's important in not what you did wrong along the way, but in the end, what you got right.

If you could go back in time: what would you now as seasoned caregivers say to your novice self about how to be a caregiver?

Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

Minding Our Elders

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After 8 years of taking care of my mom, she passed away last November. I'm still stunned, she was my best friend and my roommate, besides being my mom. I know I made mistakes, and I have regrets about things I probably shouldn't have, but I have 2 people in my life still that were with me and her for the last year of her life, and they try and make me understand exactly what you wrote up above. You have written the perfect words for these imperfect thoughts I have. I wish I could go back and do some things different, in hindsight, but I would never give up any minutes I spent with my mom, only asking for more of them. I miss you mommy. Can you hear me when I cry?
Great article, Carol.

I guess I've had good support or good training or good genes, because even though I recognize mistakes I've made, I am not tortured by them. I truly think that I am providing excellent care for my husband with dementia.

Looking back, I wish I had seen a therapist for myself, at the beginning. I wish I had learned more about caregiving to start with. (I think there is much more available now than there was 8 years ago, when I began.) I quickly learned a lot about the disease. I knew that hallucinations were likely, for example, and that helped, but I wish I'd read or heard more about how to deal with them. Some things I did instinctively right, and other things I went through a lot of "error" learning by trial and error.

I don't need to forgive myself. I did nothing evil or malicious. I did my best. I'm still doing my best. I made mistakes. I'm still making mistakes. But I'm consistently providing the best care my husband can have. I am grateful that I can do that.

Carol, caregivers who anguish over mistakes really need to hear your message. Thank you for providing it.
Hindsight. This is what I would do. First, to test to eliminate all Rx for a few weeks. My mom was on perhaps a half dozen that cause dizziness, mental confusion, dementia. Look up Beers Criteria or Beers List for info on this. Work with doctor to reconfigure doses, formulations from long lasting to quick acting. Many drugs can be stopped all together.

Second, I would have found some sort of boot camp for Mom to get healthy. Perhaps a month stay. Not a nursing home, but a place where diet can be altered, appropriate exercise and physical therapy, lots of cultural enrichment, etc. Weight lifting. I don't think such a place exists, and it should. There are things like yoga camps, but think facilities specific to the elderly should be created. When family caregivers step into the situation to help, the elder has probably let himself go, is perhaps depressed, etc. Not make the initial involvement a piecemeal endeavor. Go for the goal line immediately. While the senior is at the facility, perhaps going through it with family members, things can be done in the home to clear it of clutter, deep cleaning, safety things installed, etc.

I suppose one could create a home boot camp. I wish I had gone for the ultimate instead of doing a few small things and hoping Mom would come back to life and pick herself up again. Nope. If I had done the drug elimination program, she would have sprung to life almost immediately, I think, and then would have had the resolve to get her life together more herself.