The Beginning of the Emotional Roller Coaster

After diagnosis, if it was made relatively early in your journey, you may have many moments when you can almost convince yourself that things are the same as before . . . that life will just continue as it has, uneventful and unchanging. It’s that defense called “denial” that is alive and well for most caregivers. We have hopes and dreams that we don’t want to relinquish. We want to pretend that life is normal.

But there also comes a time when we can no longer pretend, but must admit that our world is going to change and we must change with it. I remember exactly the day it happened to us. I knew on that particular day that life would never be the same again.

It was a day like any other, and I was waiting outside the hospital for Jim to pick me up after work. He didn’t arrive right away, and I remember thinking that the traffic was heavy, and that he would be along any minute. I watched each car as it came down the road, too far to tell what type of car it was, or whether it was Jim or not. But as I watched each car come closer, I was disappointed that it wasn’t him. After 20 minutes went by, I went top hone and called home. . . no answer. We had no cell phones back then. I went back outside to wait. Again, no Jim. I was tremendously flustered, and agitated. Why wasn’t he coming? Finally I walked back to my lab and checked in with the gals who were answering the phones. No Jim on the phone, and no Jim when I went back outside again. Returning to my workplace, finally there was a message from my neighbor and a phone number to call. When I called, I learned that Jim had gone to get groceries, but on coming out of the store he couldn’t remember what his car looked like. I told my neighbor the make, model, and color of the car, and he went to unite Jim with his car. At that point we both thought Jim would be OK to drive to pick me up (after my neighbor spoke with Jim to make sure he felt calm enough to pick me up).

I couldn’t be mad at Jim, after all, he did have mild cognitive impairment at the time. I was mad because of all the time I spent waiting instead of being home cooking dinner. But really I was scared to death that something awful had happened. That emotion came first. Anger is never a primary emotion. So if you are angry, always think what the primary emotion is that you felt before the anger. It helps to recognize what you are really thinking. I learned that from Jim (the psychologist) long ago. I was frightened to death! This incident set a precedent, and I could never be sure of anything ever again. Normalcy couldn’t be guaranteed, and life was now so much more unpredictable!

Jim, I’m sure, was scared that he couldn’t remember what kind of car we owned, but he did quite well problem solving to rectify the situation. Yes, it required the help of a neighbor. How he got our neighbor’s phone number, I don’t know. When I think back to that day, I may have lost two hours of my day, but there was no car accident, no one was hurt, and he was OK.

You can never predict what will be your moment that marks a change, but you can do a little planning to help ease whatever situation it may be: 1) put a card in their wallet that lists their name, the phrase “I have dementia”, their address, your name as caregiver with phone number, and list one other contact with phone number in case you can’t be reached, 2) look into a tag that can be placed in you loved-ones wallet that can locate them from your phone, or a watch that can do the same, and 3) send their photo to the police department to have on file in case he/she is lost. There are others, but this is a good start.

You can’t know what will happen down the road, just as you couldn’t before the diagnosis. But you can learn to be flexible and take each day as it comes. You can do it, and do it well! It just takes practice and a positive attitude!

4 thoughts on “The Beginning of the Emotional Roller Coaster”

  1. Vicky,

    Thank you for your most recent post. I recall reading about that incident in “Singing in the Rain”, however one very, very good point you made in this post was that “anger is not the primary emotion”….That is definitely something that will stick with me as I go forward on this journey with my husband. Thank you and Ann again for publishing “SITR”. It has been the most helpful publication I’ve read to date.

    1. It really is a good point. Most likely it’s frustration, fear, sadness, heartache, and we then get angry. If we hone in on the real emotion and then think how they feel not knowing how to navigate their day. Once I did that I was able to empathize with my husband instead of getting angry or frustrated.

  2. Vicky, I commented on this post a bit earlier today, however am unsure that comment made it to you. Basically I said “thank you for this recent post”. I do recall reading about the incident in “SITR”, however your comment about “anger not being the primary emotion” is something that will definitely stick with me as I continue on this journey with my husband. Thank you and Ann for publishing “SITR”. It is by far the best book I have read to date and has helped me tremendously. Thank you again. Sandy

  3. Thank you for your kind words. We wrote the book because, although raw, it tells what we actually experienced rather than sanitizing the incidents so caregivers don’t think they are the only ones going through these “trials”!

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