November 7, 2018
When I was in Disney World earlier this year, I bought Jane a Minnie Mouse cupcake because I thought she would enjoy the special treat. Cupcakes don’t travel well so the frosting had been squished by the time I got it to Jane. So this time I thought I would try a cookie. Ummm – it didn’t make it all in 1 piece either, but Jane said she didn’t mind. However, she told me she prefers cupcakes to cookies so now I know.
Jane was sitting at the kitchen table when I arrived today. It took a couple of minutes for me to connect with her. She seemed to be trapped in her own thoughts & was just staring ahead blankly. When she finally connected with me, she smiled & reached for my hand. It seems to me the disease is winning more than Jane most days. It’s almost as if she has to fight really hard to be present & connect with me. I’m not sure exactly how to describe it other than someone who is lost in their own thoughts, oblivious to the world around them. I always know when Jane is winning because there is a light in her eyes – it’s gone when the disease is winning. I don’t know how to help my stepmom win against the disease other than to be fully present with her, talk to her & make contact with her by holding her hand, touching her face or shoulder or tapping on her knee. She also needs direct eye contact. I know as soon as Jane is able to break away from the hold of the disease because she smiles at me.
Jane ate well for me & seemed happy with her cookie. After lunch, I retrieved her wheelchair & helped her up from the table & into her chair so we could go outside. Jane can walk, but not very far. It’s just safer at this point to get her wheelchair if we want to go outside. I think Jane has resigned to this as well as she no longer struggles with me when I grab her wheelchair or push her outside. However she will occasionally touch her feet to the ground & push her chair backwards so you have to stay close & keep an eye on her. As a family, I think we’ve been fighting the wheelchair. I don’t think we want to admit dementia has stolen my stepmom’s ability to walk. But we probably need to realize it’s time to get a custom fit wheelchair for Jane, instead of using this basic chair at the house used for residents who fall in that middle category. I really hate this disease.
Jane & I sat under the trees in the courtyard to visit today. It’s a beautiful day in Phoenix & Jane loves the fresh air. She & I both much prefer to visit outside than inside the clubhouse. We took our pic, texted my Dad & Jane giggled at his response. My dad doesn’t think Jane connects with him like she does me, but I disagree. She is still very much in love with my dad & I see the subtle signs from Jane. He will ALWAYS be her favorite visitor – that is something I know with certainty.
I told Jane about my trip to Disney & my 3 races over the weekend. She listened intently & encouraged me to keep running. I shared each of the character pics during each of the races with her & I could always tell which characters are her favorite from her smile. When I told her how much fun I had running & how strong I had felt over the weekend she beamed with pride. My stepmom is still in there – the disease hasn’t taken everything from her. She grabbed my hand & held it tightly while I filled her in on my life over the past week. I’ve come to be comfortable just talking to Jane & being ok with her simply listening. Don’t get me wrong – I would still give anything to have a normal conversation with her, but I suppose I have made peace with our reality. And I do believe once she leaves this world, she will visit me in my dreams. So I suppose I am learning to be patient as the time will come for our conversations.
Today I thought about how strained our relationship had been for so many years. How I had focused only on the bad times & blocked out all the good. But as I reflect back on our life together with open eyes & an open heart, I remember we had many great times together too. If I could give my 25 year old version of me advice it would be to focus on the good & not the bad. Choose love over all else. We are all humans. A step-child / step-parent relationship is not easy – especially when the child is already an adult. Had we both chosen to view the other’s faults with love instead of frustration how different would our relationship have been?
I hate this disease. I would never wish dementia on anyone for any reason. And I hate that it took this disease for Jane & I to allow all our past mistakes to simply be water under the bridge. But speaking from gratitude, I am grateful this disease taught me to forgive, to be present in the now & to never take anything for granted. I can honestly say at this point in my life I feel only love for my stepmom. All the anger, the hurt, the betrayal I felt previously has been replaced with love & compassion. I’m trying to be this raw, this real & this forgiving with everyone in my life. I’m a work in progress, but I am doing my best to learn from this disease.
