Wednesday, October 23, 2013

Everyday Battles


There was a trip planned to travel to Brown County with my mom. We were supposed to ride charter buses to Southern Indiana to see the changing of the leaves, have a picnic in the park, and do a little shopping in the town of Nashville, IN. This was all supposed to be done with my mom who has severe Alzheimer's.

I agreed to go on the trip thinking that this might be the last time I would be able to do something like this with her. I was envisioning us oooing and ahhing at the beauty of fall. I did not think that this was out of the question since last time I had been outdoors with Mom she was pointing out the flowers, the trees, and the natural beauty around her as if they had been created just for her. I had high hopes for something similar on our trip.

I should not have glamorized this trip in my head. I should have gone with the mantra that has worked so many times before: “No expectations. No disappointments.”

I woke up to a wet, drizzly day, but did not let the rain dampen my spirits, no pun intended. I simply took along my raincoat and a pair of rain boots in case I needed them. I went into this trip with a positive outlook.

When I arrived at the facility where she lives, I greeted her with my usual, “Hi Mom! It's Molly, your daughter.” She looked out of it and tired. It took her a little time to be ok with my presence. Once I said we were going on a trip, she perked up and was excited. We loaded ourselves and our gear on the bus and started our 90 minutes journey south.

The bus trip was uneventful. I had been smart enough to pack some snacks, so I fed her some apples as we talked. All was fine for most of the trip, but by the end of the 90 minutes she was showing signs of irritation.

We got off the bus and thus began a day of stress for both of us. She moved like a snail. One of the symptoms of Alzheimer's is losing depth perception, and the unfamiliar terrain was hard her for. I had her on my arm, and I constantly had to tell her when to step up and step down, or warn if the terrain was uneven. She even let out a few shrieks of terror, as she was sure she was about to tumble to the ground. All of this just to get her to the restroom and back.

I told myself that it was a choice to be stressed. I told myself to take a deep breath and to enjoy the moment.

The next hour we were at the picnic. An hour of me trying to explain to my mother how to sit on a picnic bench and trying to help her do it. Trying to feed her lunch. Letting her be when she screamed at me to “Give her two minutes!” out of nowhere.

Again the reminders. Take a deep breath. Smile. Enjoy your time with your mom.

But we were halfway through the trip and on the inside I was a mess. My chest was tight from the anxiety. I was on the verge of tears every 20 minutes or so. Outside I was playing the faithful daughter, the strong, supportive, loving daughter, but all I really wanted was for the day to be over.

On to Nashville to get Mom the ice cream that I had been promising her all day. For ice cream the child within her came out to play. She was so excited for that ice cream. When I went to order a cup of chocolate chip, she indicated that she couldn't get any because she didn't have any money. I reassured her that I would pay for it and her giddiness came back. She ate that ice cream as if she had never tasted something so heavenly before. I couldn't feed it to her fast enough. We laughed at her enjoyment, and I was glad that I could make her feel so happy.

Again the reminders. Look at the bright side. You can do this. She is having fun now. Savor it.

I had to be happy with her enjoyment and resist the disappointment that was brewing in my heart. You see, that ice cream shop had pictures all over it of me, my husband, and my former teammates. For two years in a row we had won an adventure race put on by the owners of the shop. Mom had no idea. She couldn't see or process the accomplishments of her little girl.

Push away the disappointment. Push away the stress. Smile. This is supposed to be fun.

On to a coffee shop to sit with my mom, another resident, and a staff member. There was no shopping to do. No trinkets to buy. No christmas ornament that she had to buy for her grandkids. She no longer knows she has grandkids. Instead there was hot chocolate and a warm place to sit on a drizzly day.

People stared as if they didn’t understand what could be wrong with her. She doesn't look like she should need help. They don't see the vacancy of her stare. They don't understand that she doesn't know how to pick up her mug.

Just stay in your caretaker role. The staff experiences this every day. Don't think of her as your mom. This is what I tried to tell myself, albeit without success.

We went back to meet the bus. There was a delay in leaving as not everyone was on the correct bus. Mom fell asleep and I thought, “Thank goodness. She must be exhausted.” I understood how hard her mind and body had to work all day to get through the trip. All was peaceful until she woke up and we were still sitting there on the bus.

She was confused and disoriented and wanted to get off of the bus NOW. She stood up and grabbed at the seat in front of her, startling the lady sitting in it. She was angry and wanted to get off the bus. I did everything in my power to calmly explain that she must stay on the bus and that we would be leaving soon. She said she didn’t have to stay on the bus and then grabbed at the window trying to get out. She was angry and panicked and insisted on leaving. I stayed calm and tried to get her to sit down. I honestly don't have any idea what I said or did to finally get her to sit down and calm down. One minute she was happy, the next in a rage. Despite a staff member leaning over and whispering, “Good job,” I was a mess inside.

You are almost home. Deep breaths. Smile. Find your inner peace.

On the way back to Indianapolis we had broken conversations. Despite the anxiety I was feeling, I managed to look at her and study her face. I took her hand, felt her soft skin, and appreciated her beauty. It calmed her down. It helped calm me down.

I admit that I went into the trip with higher expectations than I should have. I knew better than that. I had hoped for a fun trip with smiles and pictures in front of trees with leaves afire with color, but instead endured a day of stress and anxiety. It was a day that didn't end with the trip, but bled into the next three days. The experiences of that trip were hard to process and to let go. Despite all my experience with my mother’s disease, despite living the nightmare, I still wanted the fairytale of having my mother be as she was before Alzheimer’s.

In Robert Lewis Stevenson’s novel, Dr. Jekyll and Mr. Hyde, the main character says: "I was slowly losing hold of my original and better self, and becoming slowly incorporated with my second and worse." My mother already has lost this battle; almost all traces of her rational, “good” self have been subsumed by her irrational diseased self. There are fewer days when she knows who I am. There will be fewer adventures outside the confines of her locked down ward.

Now I, too, must keep working to accept the new self that I call Mom. As with Mom, dueling forces battle within me. My irrational self wants her mother back, while the rational one realizes that this can never happen. It is easy to “know” this, and it is possible to say it and even to write it down, but, so far, it is impossible to accept it completely in my heart of hearts.

My mom’s original self, the woman without Alzheimer's, slips further away hour by hour. Although I fight my own battle of emotions to accept this and some days I don’t think I can, I know that I am supported by an army of warriors at my back. They will help me in my struggle to make peace with myself. And with their help, I will make sure that my mom, even if she doesn't remember me, at least knows there is someone with her who is her ally, her companion, her protector. My mother will not go into the darkness by herself. I will be with her on her bleak journey.


1 comment:

  1. Hi Molly, I recently took my Mom on our own "big" outing. Like you I struggle with adjusting expectations, but thought a trip to Walgreens to browse the aisles would be a reasonable girls' outing. Mom and I did pretty well and we picked up a new lipstick, a pair of sunglasses and a pretty pink flowering plant, which got the most reaction from her. Things were going so well I decided to add a trip to Panera to pick up soup to take home for lunch. I could tell she was losing it as we stood in line to order and she started showing signs of stress--too much noise, bustle and sensory overload. Waiting for the food Mom said, "Let's just go". By the time we got back in the car and I started home she was saying, "You can just drop me off here" and making attempts to find the door handle to get out of the car. I was suddenly a bad person to her and she accused me of wanting to take her house or vague accusations like "I know what you're trying to do." Thankfully we get home ok and I pull the car into the garage and shut the door before she can head off down the street and off walking. Mom is always going "home", or work, looking for a job or needing to check on her babies...so that drive to leave is ever present. Inside the house she shuts the door before I enter, leaning her full weight against it to keep me out. I head around front to get in, grab some soup and make myself scarce. Later I hear that she sat on the couch downstairs saying, "You know she's up there stealing our things." That evening I'm back in her good graces. She shares with me a special book she's "found" as if it's an interesting artifact from a stranger, when it's a blank book I gave her 20+ years ago that I called "Gifts From My Mom" in which I wrote to her about our friendship and all the wonderful big and small things I learned from her like loving hugs, enjoying books and choosing a colorful mix of veggies when planning dinner. Bittersweet to know she recognizes the love expressed in the hand-written book but she has no idea that I'm the daughter and I wrote it for her. I mourn the loss of my best friend, the person I could count on to always love, listen and would be there for me. Like you I try to focus on the fleeting moments of joy and adjust to this alternate, ever-changing relationship. And why I try to just laugh when two days later I'll find the new sunglasses we enjoyed picking out have been discarded in her bedroom waste basket.

    ReplyDelete