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

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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?


Author, columnist and speaker Carol Bradley Bursack wrote "Minding Our Elders: Caregivers Share Their Personal Stories" and is the moderator of the AgingCare.com community. Read her full biography

 
Read more about: caregiver support
 

Comments

 
  •  Comments 1 to 10 of 21 
 
 

AlzCaregiver

Give a Hug

Sep 3, 2011

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.

 
 

Tina

Give a Hug

Sep 4, 2011

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?

 
 

Danna

Give a Hug

Sep 4, 2011

What a wonderfully helpful reminder to those of us who are in the middle of caregiving. I'm here because I want to be, but that doesn't make the experience much easier. And an experience is really what this is- a learning experience every day. I try to remember that and to keep doing my best. That is all any of us can do. I will never regret the time I've been able to spend with my mom, and I'm trying to learn not to let the times I haven't been at my best eat me up. Thank you for this article and for the comments.

 
 

kellyb

Give a Hug

Sep 4, 2011

I like your article because it makes you think, about the present time, the past and the future. I care for my mom and it is a learning experience that is truly difficult, but one that I'm grateful for. This website is such a great educational resource to those new to the task of care giving, and to the old pros. who just need some support and a listening ear. I think we all would do things differently in our life if we are looking in hind sight. The thing is we just have to live and learn. Each new day can be a canvas upon which we can learn from. The good,and bad. No one is perfect however it certainly takes a special person to be a full time care giver. Kellyb

 
 

jeannegibbs

Give a Hug

Sep 4, 2011

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.

 
 

hart

Give a Hug

Sep 6, 2011

I wish that I could go back and start from the beginning again. My family was in denial about my mother's Alzheimer's and it hurt her. We could have eased her into the changes instead of fighting her about them. I look back now and I see all the signs, all the changes and the methods my father used to cover for her. They were the perfect little elderly couple who liked to travel the world, exercise, visit with their friends and planned to live forever. My sister and I wanted to keep that picture in our heads and we overlooked all the changes. So mom could not cook anymore, and then her walking slowed down, and she could not put on those pants with buttons but she could still read and talk on the phone when we called. My dad explained to us that she gets a little lost sometimes when my sister found her wandering at our favorite resort in Mexico. This was our seventh trip...she knew the resort like the back of her hand. Could have, should have, would have... When I finally did kick into gear, I tried and hope that I did my best. I invited mom and dad for Christmas 2008 and then kept her with me until her death last April 2011. I did create the boot camp/spa camp that the other member talked about. Slowly, we put mom on a special diet. No sugar! All organic foods, an exercise program, mental stimulation and loving independent caregivers at home. Such a learning curve, what do you do when someone is sundowning? How do you stop her from cussing out the caregivers and the grandchildren? How do you explain to your 9 year old that grandma is sick not crazy? How do you find independent caregivers when she becomes incontinent and then even worse, a dead lift? Who wants to have their cute little mother called a dead lift? And the final straw, a bedsore! Oh my, I lost it over that one. Full time caregivers, moving her all the time, cleaning her ever day, and we still end up with a bedsore. How do you explain to your 85 year old father that mom, his mate for 56 years, is not going to get better and we cannot take her to a foreign country for a cure?
If I knew then what I know now, I could do it better...

 
 

tpeggy24

Give a Hug

Oct 8, 2011

If I could do it over I wouldve learned about dementia sooner. I wouldve taken dad out of assisted living where we both were tortured for his behavior. I wouldve fired his psychiatrist for over medicating him, so he was confused and falling down constantly. I have no regrets about the last days of his life. I saw him and looked at family photos. He knew who everyone was. The next day he passed.

 
 

Lynstudio

Give a Hug

Oct 9, 2011

I'm having issues facing my reality. My 98 year old Mom had become stubborn and combative. Would not even accept a Tylenol for pain. I had to call the Paramedics and even innthe ER she slapped me away and said horrid things. She has a bladder infection and was dehydrated. Within 20 minutes the iv fluids had brought back the normal person. She was much better but the hospital discharged her because her ailment only allowed for one night. We got through the am and tonight she is nasty again. I'm frustrated and upset. How could they send her home only to have a rebound. We family caregivers have it rough because the patient has the ability to emotionally hurt us. My Mom is never this mean to outsiders. It's bad enough to see them deteriorate but to be abused in the process is awful. I think EVERYONE here is doing a great job simply by stepping up. When I read your words I don't feel as bad anymore.
Thank you, fellow caregivers..... You are exceptional people

 
 

tpeggy24

Give a Hug

Oct 10, 2011

dad was in a hospital when the dementia was full blast. know that it was the disease, not him. I tried to feed him because he refused food and water for two weeks. He spit it at my face. Know that it was not him, but the disease. It was the first proactive thing he had done in months. He wanted to be free of this life I supported it. The DNR supported it. He passed a week later in the nursing home. He was free. I was free too. Remember the good times folks.

 
 

JaneB

Give a Hug

Oct 16, 2011

I'm early in this caregiving in my home thing. I didn't predict the vast number of changes that would happen to our routines, and to the physical house itself, to enable things to run more safely and smoothly here. We actually thought Dad would move in temporarily and then go on to a continuing care facility -- we live many hours from his former home, and knew he couldn't stay on his own. We thought a few weeks, and then he would choose and move into a great place. Then we learned his money was largely gone, and this is his living option until he is too fragile for us to handle at home. Things like pulling up rugs, even if you like them...installing grab bars, even when they look awful...getting the stair climber chair installed, even when it makes it harder for us to squeeze up the stairs with a full load of laundry...putting objects he would use out on the counter instead of in a cupboard because his shoulder function is so poor...moving furniture so the rolling walker can navigate without taking out anything...overlooking divots in the walls where the cane bangs it and blood on the carpet because his skin is so thin it tears easily...getting the carpet guy to come twice a week to clean out the urine smell...we didn't see any of this coming. I wish I'd had a week to prepare and get things more set up, because maybe it would have been less stressful for him and my "real" family at home.

 
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