May 23, 2012

Dotty is Still With Us, 5:08 AM, Dotty Continues to Amaze Me

I will discuss crisis care with Hospice by the Sea today. If I get the assurance that I get to make the veto call on the drugs; and that, the crisis care nurses will be instructed by Hospice about our wishes before they come in, I'll accept the crisis care.

By Bob DeMarco
Alzheimer's Reading Room

It is 5:08 AM, Wednesday, May, 23, 2012, Dotty is still with us. Dotty continues to amaze me.

I fell asleep for a couple of hours. I think I was dead out (no pun). My head and body are parallel to Dotty. She is in a hospital bed and I am in her bed. Our heads are about five feet apart, on a direct straight line.

I feel like a cat. I wake up and it seems like my ear shoots up into the air, and turns to listen to Dotty. Just like a cat.

She is breathing in a perfect rhythm. I can't believe it. I listen for a while. Perfect. Perfect cadence. Music to my ears.

What the heck.
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I get up. Go over. Put my ear right next to Dotty's mouth. There is a tiny little rattle in there. Tiny.

I turn on the light. Look at her mouth. It is wide open. But not in any way distorted like yesterday.

Dotty is not shaking. She looks perfectly content. Well, almost anyway.

I go out into the kitchen. I start thinking about how you have to use your ears when you are an Alzheimer's caregiver. Out of sight but never out of mind. You just never know what a person who is deeply forgetful might do. And do they will.

I am reminded of the time I put the new bag of potato chips up on the top shelf of the cabinet in the kitchen. I didn't hide it.

In order to reach that shelf Dotty would need to go up two steps on a step ladder, and then, extend herself to the fullest to reach those potato chips. Dotty wanted those chips.

She dragged a chair from the kitchen table across the kitchen, and then grabbed the cooking tongs. She was climbing up onto the chair when I arrived on the scene. I didn't realize at first what Dotty was doing. So I asked in a hard, stern voice, what are you doing? Dotty reversed field and headed straight for her bedroom and bed. It took quite a while to get Dotty out of her room.

In the meantime, I figured out she was on a potato chip hunt. She located those potato chips and had figured out how she was going to get them.

Eventually, I realized she was capable of more than I could imagine. Later on, upon reflection, I realized I should have been happy that Dotty could put all that together.

This happened during the period of my Alzheimer's caregiving journey that can best be described by the word -- Burden.

Dotty was in her room, unhappy and upset. I ended up sitting in my da Vinci chair with a stomach ache. Dotty was unhappy, I was unhappy. I was confused. What was I going to do? I didn't want Dotty to fall and break her neck on my watch. I also didn't want to see Dotty in that bed curled up in a ball.

I figured out the solution to the potato chip problem, I started hiding them in the cloths dryer. It was quite a while before I learned to look at the world through Dotty's eyes. A while before I made the big, giant, step to the left and entered Alzheimer's World.

Eventually I started writing about Dotty and potato chips here in the ARR. I was surprised when Louise, down under, started advocating for Dotty. She basically told me to give Dotty the chips. She along with Dr Oz convinced me to give Dotty more eggs. Dotty loved potato chips, and she loves eggs. Potatoes also.

I did come to my senses thanks to Louise and others.

By that time, I was already on the path to joy, even though I didn't know it. Back then, I was happy that things were going much better than they had in the years before Dotty started trusting me again.

I was learning something new every day. What I was learning was how to understand, cope, and communicate with a person that is deeply forgetful.

Things became so good between Dotty and me that I genuinely felt joy in most everything we did. I felt this in my heart first. Then assimilated it in my mind.

Yesterday, Max mentioned how I look at Dotty as my real life cartoon character. Its true. What is not be as apparent is I am also a cartoon character.

I can't tell you how many times my heart seemed to jump out of my chest, got real big, and was pumping for joy. Just like you see it in the cartoons.

As I think of Dotty going for those chips with the chair and the tongs, I can't help but feel happy. Teary eyed right now.

This explains in part how it is going to be all good after Dotty passes. I'll be happy, not sad. Good memories.

I will discuss crisis care with Hospice by the Sea today. If I get the assurance that I get to make the veto call on the drugs. And that, the crisis care nurses will be instructed by Hospice about our wishes before they come in, I'll accept the crisis care.

I don't want to tell them how to do their job. I just want some understanding.

My reason for accepting crisis care is simple and straightforward. I'll need someone to wake me up if Dotty decides to go into the light while I am sleeping.

Is it possible to love someone you never met? People around the world that I met on a computer? I think so.

I love you all. Your comments, emails, and support mean more than I can say in words.

Thanks to Hospice by the Sea.

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Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 3,511 articles with more than 297,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room