February 27, 2019

Lunch with Jane:

Jane was sitting at the kitchen table when I arrived today. She smiled when I sat down next to her – she was happy to see me.

I brought a new cupcake today – cookie monster. I fed Jane the mini chocolate chip cookies first & then we dug into the cupcake itself. About half way through I asked Jane if it was good & she said yes & smiled. After she finished her cupcake, I helped her to drink a glass of water. Drinking is not as easy. You have to hold the glass for her & if I tipped up too far, she can’t swallow it fast enough & it spills. I always jokingly say when I cause her to spill “good thing it’s only water.” I make light of the situation, but to Jane, I’m sure its just one more reminder of what this horrible disease has stolen from her.

It is a beautiful day here in Phoenix, so when we finished eating I told Jane we’d head outside to visit. We made a full lap before settling in under the trees.

Jane was quiet at first, but it was clear she was alert. Her eyes were full & bright & she held on tightly to my hand. We texted with my dad & then I put my phone away. Jane doesn’t like me to have my phone out when I visit. She wants my full attention. I noticed her skin was dry on her arms so I asked my stepmom if I could rub lotion onto her arms to help. She nodded yes so I dug it out of my purse. As I was rubbing her arms, I noticed a bruise on her left arm & she flinched when I touched it. It hurt. I asked Jane what happened but she didn’t answer. Once I put the lotion away in my purse, Jane said “I’m scared.”

If you’ve been following our journey, you know my stepmom rarely speaks anymore. Her language was stolen from her by this horrible disease several years ago. She is, at times, able to get a few choice words out, when she needs to. It always seems to take concentrated effort. When she said I’m scared, it caused all my alert flags to fly. I repeated the word to her & asked her what she was afraid of. I asked her if she was afraid of dying because that is the first thought that came to my mind. She said no. I asked her if someone was hurting her. She didn’t answer – just sat there silently looking at me. I asked several questions to which I received no response. Finally I said, “Jane, did your roommate hurt you?” Jane nodded yes. Now, I have no idea if Jane comprehends the meaning of the word roommate nor if she associated this with her actual roommate. Nor do I have any reason to believe Jane’s roommate did hurt her. But I do believe someone hurt Jane. When we spoke with Emely later, she pointed out a big bruise Jane had on her right knee to go along with the bruise on her left arm. Jane does not normally have bruises. She sits in a wheelchair so it’s not like she would have simply fallen & bruised herself.

Jane’s nose was sniffly & she had a bit of a cough. I also noticed her muscles were trembling – almost like the Parkinson’s kind of shaking. At times over the years I’ve witnessed this in her arms – today I noticed it across her entire body. I texted all of this info to my dad & he suggested I speak with Patty (the head nurse) before I left.

We stayed outside sitting under the trees until 1 pm today. It really is near perfect spring weather & I could tell Jane was enjoying the fresh air. I did not need to rush off today, so I opted to savor the moment. When we finally headed inside, I grabbed Emely & we took Jane to her room to change her. Unfortunately, Jane had shit her pants. She hadn’t seemed to even notice. I share not to embarrass my stepmom, but to explain everything her body seemed to be doing to fight her today. It took 3 of us to help her stand out of her wheelchair & it was equally hard to help her sit back down. Everything appeared to be a challenge for her today. I shared with Emely & the other care giver (I don’t know her name) how Jane had told me she was scared & her roommate had hurt her. This is when Emely showed me the big bruise Jane has on her knee. Emely expressed her concern with me on how the 3rd shift does a poor job of sharing things that happen on their watch. This is not the first time I have heard this concern. The other caregiver commented on how Jane was acting scared. She pointed out how stiff Jane held her body – even once we got her settled into the recliner chair with her feet up. Think about how your muscles tense up when you are afraid – this is similar to how Jane appeared today. I told Emely I wanted to talk to Patty before I left. She agreed that was a good idea.

After I had Jane comfortably situated, I kissed her goodbye & went out to search for Patty. I was told she had stepped out for lunch. So I asked for the assistant nurse. I was directed to the nurse’s office where I sat & chatted with Deborah for about 15 minutes. She listened, took notes & shared what little info was noted in Jane’s chart. Unfortunately, the bruises & Jane’s fall out of bed a few days ago were not noted in her chart. She assured me she would visit Jane this afternoon & give her a thorough review. She also stated the doctor would be here today at 1:30 so she would address this info with her. Deborah mentioned the stiffness of the body is all part of this horrible disease. She said Jane’s body is in a constant state of fight or flight yet it is unable to take any action. She shared she has worked with this disease for 20 years & it is a very cruel disease. Deborah also told me she would discuss with Angie (the gal in charge of the caregivers) the lack of communication from the 3rd shift to the 1st shift. She echoed Emely’s concern & agreed this lack of communication needs to stop. I felt very comfortable talking with Deborah & I do believe much of Jane’s problems today are tied to the progression of her dementia. It is a horrible disease. I wish I could save my stepmom from her suffering. All I can do is be here for her, talk to the professionals & do all we can to ease her suffering. I fear we are not far from Jane being stuck in a wheelchair – no longer able to even stand with assistance. I hate that she is scared. I hate that she is unable to end her suffering. I know that end will eventually come, but how bad does it need to become for her before then?

I hate this disease.