August 29, 2018

Lunch with Jane:

Today I found Jane sitting at the kitchen table when I arrived. All the residents were sitting in the kitchen so it must have been a good morning – they were ahead of schedule. Jane was quiet but she did give me a small smile when I pulled the cupcake out of my purse & sat it down while I grabbed a chair. She had a lot to say, but I couldn’t understand any of it. She did seem angry. Not with me – just angry in general – or perhaps it was frustration. I hate that I can’t understand her & I hate to think she is suffering. This is why visits from those she loves are so important – it always makes her feel better – at least for a little while.

Jane gobbled up her cupcake so it was obviously a hit! It was chocolate cinnamon with a churro on top. Jane even enjoyed the churro. When she was done, I asked her if she would like to sit under the trees today & talk to the birds. She said yes. My stepmom really enjoys the chance to sit outside & soak up the fresh air so I hope fall hurries. It luckily wasn’t too bad in the shade today. Jane walks very slow now & really prefers to hold on to me with 2 hands. We took our time & made our way to the courtyard. Once I got Jane settled into the chair & I was sitting next to her, I looked at her & she smiled. This is what she wanted. We talked for just a couple of minutes before Jane fell asleep. Apparently she was tired. She slept most of our visit today – which is ok. She is relaxed & feels safe in my presence – that’s what matters.

Towards the end of our visit, Jane’s friend Marianna came out to join us. Jane woke to talk to her for a minute. I realized we had not seen our bird friend. In fact, I had not seen or heard any bird our entire time sitting under the trees – very odd. Marianna said they had been out earlier but wasn’t sure where they all went. It’s odd the things you notice when you simply sit in quiet.

Marianna told me I smelled nice. I thanked her & told her it was probably my perfume. She said, “they don’t allow us to wear perfume here & I really miss it.” Isn’t it funny the things we take for granted & don’t realize how much they are a part of us – until they are gone? This horrible disease absolutely makes me more aware of simple day to day pleasures.

Emely walked by with Robin (one of the residents) so I asked Emely to help me Jane to her feet. It seems to take real concentration on her part to stand these days. Once she is up, it’s easier to move forward. I told Emely I was fine getting Jane back on my own which allowed Jane to take her time getting back. When we got to the door, Robin was standing inside waiting for us. I asked her if she wanted to help me get Jane to the couch & she said yes with a huge smile. Robin is not as far along as Jane & she really enjoys being helpful. She’s very sweet with Jane too. As we got to the chair that Jane likes, Jane tried to sit on the arm instead of the chair. Bindu (another care giver) was close by so she rushed to Jane’s opposite side of me to help. It took both of us to get Jane into the chair. Once my stepmom was settled, I squatted in front of her, grabbed her hands & said, “do you do that just so you will be the center of attention?” Jane smiled a very big smile. I told Bindu my stepmom always enjoyed being the center of attention. I kissed Jane goodbye & told her I loved her. Bindu & Robin sat down next to her so I know she felt safe.

I told a friend tonight I think I need to start taking Wednesdays off & get more work done over the weekend. The benefit of being an entrepreneur. I just find it so hard to be productive after I visit Jane. No matter what I do, when I get home, I feel completely drained. The bad visits for sure are worse on me, but even visits like today that aren’t bad per say, take their toll. It’s a weird thing to watch someone you love slowly die in front of you. I think it tears at my soul. I want to help – to fix it – and there’s nothing I can do other than simply sit with her. I don’t think its possible to understand that until you’ve been through it personally. I’m to an age where my friends are losing their parents & for those who went ahead of me in this journey, I am now grasping the amount of pain they went through. I always offered love & support – but how can you truly understand the pain unless you have lived it? I suppose it is just part of the journey of this life but man is it a shitty part.