December 28, 2016

Dementia sucks. It is a cruel, bitter monster. Not only does it punish its victim but all of her family. For those of you lucky enough to not have experienced this disease – I am grateful. For my friends who are also battling this monster with their parents, I am incredibly sorry.

Is she suffering?

Is she in pain?

I ask these questions every day. When my dad calls me, I wonder if he is calling with bad news. This is my reality of final stage dementia.

Jane was better today than Monday but so far from where she was just a week ago. This seizure has taken a huge toll on her body. She has had 3 seizures now.

When I arrived today, Jane was still in bed. Her caregiver told me she had been up earlier & had breakfast but had gone back to her room to lay down. She was awake when we went in – just laying in her bed. This is something this disease has taken from my tenacious stepmom – her ability to take action on her own. She may have wanted to get up earlier, but no one had come to help her up & she won’t cry out for help. She stared at me – as if she didn’t know who I was & it took some persuasion to get her up. But once she was up, she held my hand & walked to the kitchen. When her caregiver left us & it was just Jane & I, she looked at me, smiled & said “I love you.” I said I love you too Jane & took her hand. She did not want to let go of my hand through lunch so I had to use skills to feed her with just 1 hand. I don’t know how hard it was for Jane to get those magical words out for me – she barely made another sound the rest of our visit.

She ate well for me & then we went to her room to get her jacket. My dad zips it to the top & snaps her top button so she showed me to do that too. Then we took our walk. We made a slow walk & then she sat in our swing for a few minutes. Today Jane was interested in listening to me talk so I just told her about my day & I told her how much I miss her. She held my hand tightly our entire visit. Jane wanted to make a second lap before going inside so we did. Before we got back to her house, she stopped. I asked what was wrong. She leaned in to me & gave me a huge hug. She held on tight – it was the best hug she’s given me in awhile. Her way of telling me she loves me. We watched tv together for awhile before it was time for me to go. Jane wanted to go back to her room so I tucked her in bed, kissed her on the forehead & said I would see her soon. She said ok & closed her eyes.