This quote from Tracy Cram Perkins* is one of my favorites from my book, A Relationship Contract for Dementia Caregivers for several reasons. Certainly, one of them is that the person with a memory impairment who has short-term memory loss won’t remember when you told them no. But if “no” is said when our behavior shows our anger and frustration, that is a problem. As I write in my book:
“Know that at all stages your care partner will continue to react to how you treat them if not in words, then in behaviors. If guilt or another emotion is making you raise your voice or slam things around, THEIR behavior will reflect YOUR behavior.”
“Also know that people living with a progressive brain disease do have emotional memory. They may not remember what you said, or mistakes you made, but they will remember how it made them feel. The saving grace is once you change your behavior, when they feel safe again, they will change their behavior, allowing you to forgive yourself. “
And this is one of the gifts of dementia do overs. You can learn from your mistakes and in this, learn to forgive yourself.
We are human and will make mistakes. We will instinctively correct a statement. We will ask “Don’t you remember?” We will be upset with behaviors and try to correct them like you would with a child instead of doing detective work to determine why this behavior, why right now.
And we are so hard on ourselves. We carry guilt about our mistakes and beat ourselves up when we can’t solve a problem. Some problems have no good solutions. We simply must pick the best of the crappy solutions open to us and hope for the best.
Somewhere along the way, we need to come to believe that we made the best decision we could with the information we had at that moment. When we accept that things will continue to change and we’ll need to rethink decisions more than once, we can forgive ourselves.
And we need to come to believe that mistakes are OK. In fact, I would even say mistakes are good. Because in making mistakes we learn what works and does not work. In making mistakes we re-learn the lesson, “Oh, they may look the same but they are not, they really do have a progressive brain disease.” When we learn from our mistakes and share those lessons with family, friends and professionals, everyone benefits.
There is one other gift in dementia do overs. The opportunity to mend difficult, even broken relationships.
You do it by putting yourself in their place. We know what it feels like when we forget where we parked our car—that moment of panic. We know what it feels like to walk into a room and forget why we came into it—thinking so hard and the reason is just out of our grasp. We know the frustration when we can’t retrieve a word—give me a minute, it will come to me. We know how embarrassing it is to not remember the name of someone when we start to introduce them. Our experience in the pandemic helps us to empathize with what it feels like to need to go someplace or see someone and we can’t. Remembering how we felt in that moment helps us to be empathetic and patient.
You do that by living in their reality, whatever time in their life it is and connecting in that moment. In living in their reality, on their terms and in shared laughter, you can let go of old hurts and can connect or reconnect in amazing ways.
Living in their reality is advice everyone gives to dementia caregivers, but just exactly how do you DO that? This video, How to Talk so Alzheimer’s Can Hear You, is one of the best examples I have ever found that shows there is joy to be found when we live in the moment with our person.
*Tracy Cram Perkins is the author of “Dementia Home Care: How to Prepare Before, During and After.” Written in an easy-to-read manner and with practical advice, it is an amazing resource for anyone who is trying to keep a person with a memory impairment at home. I recommend it all the time.
Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.
Deb is the author of “Your Caregiver Relationship Contract and “A Relationship Contract for Dementia Caregivers.” Your Caregiver Relationship Contract is available in both English and Spanish. It explains how to have an intentional conversation and the how unspoken expectations can cause problems during caregiving. A Relationship Contract for Dementia Caregivers explains how important it is to learn how your person wants to live their life out and how you, the caregiver are the most important person in this relationship, giving you tips and tricks for this journey.
Click here to learn more about Your Caregiver Relationship Contract or here for the Spanish version: Su Contrato de relación como cuidador de un ser querido. Click here to learn more about A Relationship Contract for Dementia Caregivers.
Deb is available as a caregiver consultant. She will answer the question: “Where do I start?” and find the resources to alleviate your stress. If you would like to invest a half hour to learn how she can help you, please contact her at: Free 30 minute consulting call
