April 4, 2018

Wednesday lunch with Jane:

Stopped by the cupcake store today like usual, only to find it was closed. No sign on the door, no explanation as to why – just closed. That meant no cupcake for Jane. Not sure she even noticed.

Jane was sitting in a chair in the great room when I arrived. She did not respond to me walking up, nor when I touched her arm. I had to squat down, grab both of her hands & look her deep into the eyes to get any type of reaction. It still took about half way through her meal before she smiled at me & acknowledged that she was in fact still there. It was a rough day for Jane.

I saw Emely as I walked in & she came over to help me get Jane up & to the table once she had placed Jane’s food out for her. It took both of us to convince her to stand & while she walked fine to the table, she seemed confused about sitting down. She didn’t want to let go of my hand & did not want to turn to sit. Normally this is an easy process – but today the disease had a tight grip on my stepmom. Once we had Jane sitting at the table, Emely left to help other residents & I began to feed Jane her lunch. She ate well & even finished all of her dessert but she seemed to be on auto pilot. I briefly mentioned my trip to Jane, but told her we would talk more once we were outside. This seemed fine to Jane as it was clear she was having a hard time focusing on more than one item at a time. About half way through her meal, she seemed to take control of the disease & she smiled at me – and it was clear she knew me.

After she finished dessert, I asked Jane if she would like to take a walk. She looked at me & smiled so we got up. This time was easier. We headed outside while she gripped tightly to my hand. Jane was walking slowly today & we stopped often. We made it to the trees & I asked her if she would like to sit down in the shade & talk. She nodded yes. Again, she seemed to struggle to sit down. This is what happens when the disease is in control – Jane’s mind appears unable to direct her body. Or I should say it takes great effort to get her body to cooperate. I wonder – will there come a time when she is no longer able to walk?

Once Jane was settled into her chair, I pulled a chair next to her & sat down. We took a picture for my dad & sent it & then Jane grabbed my hand & held it tightly. I began to tell her of my adventures over the weekend & showed her all the pics on my phone. She looked at each picture & listened intently. Occasionally a picture would catch her eye & she would react in some way, but mostly she seemed far away. My dad texted when we were looking through all the pictures & when I read his text to her, my stepmom smile & squeezed my hand. She had connected to my dad. But once the pictures & the story of my trip were done, Jane disappeared from me. She was there & her eyes were open – but she wasn’t really there anymore. The rest of the visit was spent mostly in silence, with Jane holding my hand.

While we were sitting, another resident came by with her brother & sister in law. I knew the resident because she had lived in Jane’s house the first few weeks. I chatted a bit with her sister in law & learned the resident had frontal lobe dementia which apparently ran in her family. She is about Jane’s age & has deteriorated quite a bit since they last saw her in July. They live in California. The brother said I realize with this visit I have to make the time to come see my sister every month. I could tell the disease was taking its toll on him. I know that feeling of helplessness as well. I shared some of Jane’s journey & shared how happy we as a family have been with the facility. That seemed to bring him some comfort.

This is a cruel disease. I have said it many times. It not only imprisons its victims, but their family too. Dementia may not steal our abilities like it does its direct victim, but it is merciless on the pain it inflicts while you watch your loved one suffer & slip away. People tend to think dementia & alzheimer’s attack the old, but more & more I see it attacking people in their 50’s & 60’s. That’s still young in my book. People should have so much life left before them at this point – and dementia steals that away from them – slowly & painfully.

Tomorrow we celebrate Jane’s 67th birthday. Last week she requested lemon cupcakes for all. I hope for her sake she beats this disease tomorrow so she can enjoy some time with her family & celebrate.