Connect the Dots

As a young child, I loved the connect-the-dots pictures scattered throughout coloring books. I would try to guess what the picture was going to be, as my pencil drew in the lines from one dot to the next. Of course as I got older, the predictions became easier.

Mom’s memory loss and confusion is just like the connect-the-dots pictures of my childhood. Only this time, the completed picture wasn’t the one I wanted to see. As I mentioned in my first blog, my suspicions were not good and I tried to justify each episode of forgetfulness or confusion.

At first I would tell myself that Mom was just worried about Dad, since his physical health tends to go in cycles. One afternoon Mom shared her fear of waking one morning to find Dad had passed away during the night. It was heart wrenching for me to sit quietly as her tears flowed, allowing her to be a woman worried about her husband and not the Mom who never exposed this side of herself. She needed to talk and needed me to listen. Despite the voicing of fears, it was a precious intimate moment shared between a mother and her daughter. I was honored to help Mom with her struggle. And of course, her anxieties over Dad had to be the source of her drifting memory.

Eventually, I had to ask myself how many justifications were too many? When do I admit that too many excuses have been made? At which point does the evidence that something is wrong become so overwhelming that I can no longer look the other way? How many dots did I need to connect?

Three years ago I could no longer reconcile what I saw with my desire to rationalize her behavior. There were times when Mom would use the incorrect word for an object. She would use the word mug for glass. Now we all do this from time to time, but we self-correct. Mom did not. Or there was the time she called Betty’s house and listened to Alex, stating that no one was home. Mom left a message saying hi to Alex, but could not remember Christopher’s name. She finally said, “tell….your brother… Memere says hi”. As Betty related this to me, I knew I could no longer ignore what was happening. I was sick to my stomach. And I felt all alone, for I was losing Mom.

I took Mom to my doctor, an associate of her and Dad’s doctor. I had given the doc background information and examples prior to the visit. She asked Mom a few questions and talked to her. After her “exam” she told Mom that she thought that Mom did have some memory loss and it could be due to Alzheimer’s. Later at home, Mom cried, stating between gulps that she didn’t want to be a burden for us. Again, I sat there and let her cry. This time my tears flowed, too. My heart ached for her. There weren’t any words of consolation. The folks at Hallmark had not written a card for this “occasion”.

By the time she went to the neurologist, she had decided that the first doc was wrong. I was not at the neuro doc visit. Both Mom and Dad told him everything was fine. He said she may have some memory loss, but never said the “A” word. That sealed Mom’s conviction that the first doc was wrong. She still speaks of her with such contempt that I have to do a double-take because Mom never talked about anyone in a voice dripping with malice.

Fast forward one year and two neuro check-ups later. Mom was scheduled to see the neuro and I knew that, again, she would say everything was fine. I called and gave him a list of observations of what had been happening in the past few months. All the sibs were worried. Our biggest concern was Mom’s growing confusion and her subsequent safety. I can still recall coming in during dinner preparation. A couple of pans were cooking on the stove while Mom and Dad played Yahtzee, their national past time. I asked what was for dinner. Mom looked at the stove and said, “I guess I need to see what’s cooking on the stove to see what we’re eating tonight”. That blew me away. Red flags popped up all over my mind.

After examining Mom, and reviewing my observations, the neuro took Mom’s license away. She was devastated. The “A” word was not mentioned. In fact, the neuro danced around the issue, stating that there are a number of causes for memory loss. Yea, right. Here’s the deal: Alzheimer’s is diagnosed once all other causes for memory loss have been ruled out. No matter how fast that neuro tap-danced, I knew in my heart what was happening. Mom was starting to fade in miniscule increments.

It was at this point that Mom and Dad decided to move to the “home”, as they called it. This was a facility with independent apartments along with step down care levels as the need arose. What happened there is another blog entry.

I look back now and sigh. I wish the dots had formed another picture. I wish the emerging picture had been one with a treatable condition. My wish was not granted.

Now I just pray for moments of clarity where my Mom, the one of my childhood and most of my adulthood, is sitting with me as we talk about the day’s happenings. When this happens, I want to freeze time and linger there a bit longer, savoring every detail of my Mom. In an instant it can be gone. Other times it lasts longer. And then she fades away, only to be replaced by her present-day self. Sometimes when her fog lifts it is more painful, for I yearn for the fog to disappear for good. It just sucks, either way you look at it. Those are my dark times.

In the meantime, I am learning how to wait patiently for a “my Mom” encore. Patience is not my strong suit.

JaneEllen

The Cowardly Lion

This entry is about one of my favorite kiddie holidays – Halloween. As I watched all the little ones come to our door, I couldn’t stop my stroll down memory lane. Mom and Dad loved creating costumes for us. The only time we had store bought costumes was the year we moved to Delaware. We moved in the day before Halloween. Needless to say, homemade creations were bottom of the priority totem pole.

The following year M&D outdid themselves. Lynn, Mike and I were transformed into the scarecrow, the tinman and the cowardly lion. Lynn suffered through a night of itchy straw as the scarecrow, Mike had to maneuver through the streets with silver painted corrugated cardboard wrap around his arms and legs as the tinman; and I had on a pair of dyed brown pj’s and a frayed rope mane as the cowardly lion. I, by far, had the easiest to wear costume. I loved it. in fact, I won an award at the annual Halloween parade. We never figured out why the judges didn’t see the three of us as one unit. Of course as the youngest of the “three older ones” it felt great to win something all of my own. What can I say? I can still tap into that childhood feeling of triumphing over my older sibs.

A couple of years later it was Patty’s and Betty’s turn to be transformed. Mom and Dad dressed them up as Jack-in-the Boxes. They were Jill-in-the-box and cute and fun to watch.

Mom didn’t stop making costumes once all of us were grown. Nope, she had a new crop of grandkids to fuss over and continue her creations. Adrienne took advantage of this desire. She asked for a fairy princess costume and Mom delivered. Adrienne loved her princess dress with its mounds of pink tulle and touches of silver sparkle here and there.

Then there was the year I tried to make Adrienne a poodle skirt. Mom and I shopped for the red felt material. I proudly displayed the finished skirt to Mom, only to discovered that we had bought craft felt. Craft felt stretches – in case you didn’t know this; we certainly didn’t. Poor Adrienne, by the end of Halloween night she was tightly gripping her skirt so it wouldn’t fall down around her ankles.

These are memories I tightly hold onto every day. I am ever so thankful that I can recall them in fine detail. I deeply regret that Mom doesn’t remember all of these times. She has snippets of it here and there, but the picture has holes in it like fisherman’s net. Some memories flow through while others are caught in the net, never to be released again.

I miss the Mom with all of her memories intact. Her joy has dimmed, just like her mind. As hard as I vow to rejoice in the Mom I had for so many years, there are times when the Mom with a blank stare saddens me. This is the struggle I face as we continue down this path. I fear the dark tunnel that lies ahead where the net will trap all of Mom’s memories.

Maybe I am the cowardly lion and I need the scarecrow’s intelligence, the tinman’s heart and the Jill-in-the Boxes’ joy to walk with me. Together we can help each other love and care for Mom.

JaneEllen