April 11, 2018

Wednesday lunch with Jane:

New cupcake today – orange creamsicle! It looked fabulous! And Jane gobbled it up so apparently it tasted fabulous too.

The disease is taking a stronger hold on my stepmom. I believe she still recognizes me because she still smiles at me, still squeezes my hand tight, but it’s harder to grab her attention. I have to either sit down next to her or squat down so I am eye level with her & get close so our eyes can connect. Once she really looks at me, she gets it & she is happy to see me. Most of the time, she is very distant. The best way I can describe it is when someone is giving you the cold shoulder. Only Jane isn’t trying to give me the cold shoulder – the disease is just pulling her away.

I still talk with Jane & tell her about the happenings in my life, but she rarely engages anymore. Does she not understand what I am saying to her or is she simply unable to react? She holds my hand tightly & refuses to let go – that is the best I get most days.

I had on a Mickey & Minnie t-shirt today & that got a reaction out of Jane. She pointed to the mice & smiled. Does she remember them from her childhood? I did not get my love of Disney from Jane – that was long before she entered my life. My parents introduced me to the magic of Disney when I was 5 & we moved to Florida. Jane knew my sister & I loved Disney, but it never seemed important to her – which was absolutely cool. It just makes me wonder what made her connect with my shirt today?

After lunch, Jane & I headed outside. My back is still bothering me & Jane didn’t seem interested in walking far today so we simply walked to the courtyard in the middle & sat under the trees. I enjoy sitting here. It’s shady & the birds sing songs for us. We typically have this area to ourselves until the group smoke break at 1 – at which time we head inside. Today another family was visiting their loved one – a guy in Jane’s house. We had been sitting outside for about 10 minutes when they decided to join us. Not a huge deal – until they both lit up a cigarette. What is it that made them think that was acceptable? Both Jane & I hate cigarette smoke. I asked Jane if she wanted to move & she said yes – the only time the entire visit she would give me a direct response. But sadly she was unable to get up – her legs just would no cooperate. So we were left to inhale that stinky smoke. If I wasn’t so sad to see my stepmom today, I would have told them to move – but I just didn’t have anything in me today for any type of confrontation.

Luckily Rose headed our way. She is a nice woman who lives in the house next to Jane. I asked her if she would like to join us & she said yes. So I got up to get a chair for her. I usually see Rose on my way out from visiting Jane & she always asks, “how’s your momma?” Today was no different. I told her it was a rough day – the disease was winning. Rose asked me what that meant, so I explained. Sadly Rose has shared with me before she too has dementia. I think she fears the day she is the same stage as Jane. But luckily for Rose she appears to be several years behind my stepmom in this journey. Rose & I talked about her husband & her kids & Jane held my hand tightly. Occasionally she would try to chime in but it was always jibber jash. I can not even imagine how incredibly frustrating this disease must be for Jane.

As we sat there chatting with Rose, another gal came out – Marianna – she was originally placed in Jane’s home & they became friends immediately. Marianna is always happy to see Jane & I believe Jane feels the same way for her. She came over to say hello & kiss Jane on the top of the head like she typically does. Jane leaned in lose to her – friendship – even through this horrible disease. I grabbed a chair for Marianna & we had our own little party.

Eventually everyone came out for a smoke & that was our cue to head in. Jane was able to get up this time. I don’t want her to forget how to walk so I always do my best to wait until she is able to get up by simply holding my hand for balance. We walked slowly inside & found most of the residents in Jane’s house watching tv. Gone With the Wind had just begun. I said, “oh Jane – this is a great movie – lucky you!” She quickly sat down as she does love this movie. Jane always loved the old classics.

I kissed Jane goodbye & told her I loved her. She smiled at me & squeezed my hand. I know she is tired of fighting this horrible disease. She has fought so hard for so long. But now it seems the disease is fighting harder. I don’t know how much time we have left. I hate watching her suffer. I told her again today, whenever she is done, it’s ok. I will love her forever & I will miss her, but I understand she is getting tired. I told her again today – anytime you are ready to let go, it’s ok.

I hate this disease!!!