April 22, 2018

Lunch with Jane:

My Wednesday lunch date was changed to Friday this week because I was in Mexico on Wednesday. Which meant a new cupcake flavor for Jane! I believe they called it Rocky Road. It was messy, but Jane enjoyed it. 

I will be honest & say I am finding it harder to share my visits with Jane. I feel emotionally drained when I come home & I don’t always know what I want to say about our visit. Some of our conversations are meant to only stay between the two of us, but at the same time, I want to share our journey so everyone understands the horribleness of this disease. That’s why it’s Sunday evening & I am just now sharing our visit. Jane’s story needs to be told – I know that. It’s important to her – I know that. And I believe it’s important to me too. It gives me time to reflect on the lessons this horrible disease teaches. 

I don’t normally visit on Friday’s & Friday’s are the beginning of the weekend crew – so I am not as familiar. Though I will add many of the weekend crew also work during the week – simply in another house – so I recognize their face. I signed in as normal, entered the facility & headed back to Jane’s house. Their is a locked gate to get to the back 2 houses – where Jane lives. It wouldn’t open for me. I know the codes for all of the doors by heart – but it wouldn’t open. As I was about to turn around & walk back to the front to get the new code, one of Jane’s caregivers came out & let me in. Apparently someone had given Myron the code so they needed to change it. No one else was outside so Sebastian gave me the new code. I introduced myself & said I was Jane’s daughter. He told me Jane had just sat down for lunch. I went to Jane’s side & bent over to kiss her on the forehead. She grabbed my hands, looked me in the eyes & smiled. I grabbed a chair, sat next to her & began to feed her lunch. Today she was having fish. I don’t like fish – it smells – but Jane does like fish & she enjoyed her lunch. She was actually a bit feisty & was grabbing at her plate – apparently I was not feeding her fast enough.

 Jane finished her lunch & I opened the cupcake box to reveal a new flavor. It was messy & by the time I was done feeding it to Jane, I had chocolate & marshmallow all over my hands. I asked Jane to wait for me while I washed my hands. 

It was a beautiful day in Phoenix on Friday so Jane & I headed outside after lunch. She walks very slowly now & doesn’t seem interested in going far. So we walked around to the courtyard in the middle & sat under the trees. We were alone today which was nice. I shared all my photos from Mexico with Jane & told her everything about my trip. She would occasionally stop me so she could focus longer on pictures she liked. I had taken a picture of my view from my lounge chair looking out onto the ocean my last day – you could see my big pink sun hat sitting on the foot of my chair. Jane looked at this picture for a long time. I said it’s a beautiful view isn’t it? “Yes” she said, then took a big breath & sighed. Was she said she would never get to walk along the beach with her toes in the sand again? I don’t know. She held my hand tightly after we finished the pictures, waiting for my dad to respond to our text. We sat peacefully, enjoying our time together. 

When my dad didn’t respond to our text, I could tell Jane was getting worried. I said should we call Gary & make sure he’s ok? Jane said yes. So we called him on speaker phone & Jane listened intently while he & I chatted. She may not be able to talk anymore, but she is still able to listen. I felt her relief as she heard his voice. Jane worries about my dad – even with everything going on – she worries about my dad. When we hung up the phone, Jane grabbed my hand & held on to it. She enjoys holding the hand of those she loves. 

A little later, Jane’s friend Marianna came out of her house & came to join us. I asked her if she would like to sit next to us – she pulled a chair right in front of Jane – so they could face one another. Jane smiled, reached out for Marianna & patted her on the face. Marianna took Jane’s hand & they held hands the rest of our visit. I could tell they both were happy to see one another. They did not know one another before this horrible disease – they met when Marianna moved into the facility about a year ago. But they quickly became friends & have remained friends. Marianna is not as far along in this journey as Jane & still has the ability to speak & know what’s going on around her. Jane has not had a full vocabulary since they met, yet Marianna doesn’t mind & seems to know how to communicate with her. It really is magical to watch. It’s similar to little kids who haven’t learn to speak yet still communicate with their friends. Companionship – we all need it to survive. 

When everyone began to come outside for their cigarette, Jane & I took that as our cue to go inside. She took both of my hands for support as she stood & we walked slowly back to her house. She found her chair & sat down with several of her house mates to watch tv. I sat next to Jane for awhile because she didn’t want to let go of my hand. When she was ready, I stood up & kissed her on the forehead before leaving. She smiled &

Squeezed my hand one more time. I believe the hand squeeze has replaced her hugs – it’s her way of saying I love you.