May 31, 2018

Wednesday lunch with Jane:

I have to be honest – I am finding it harder to share my weekly update. This is the 2nd week in a row I haven’t posted until Thursday. It’s not that I don’t want to share the journey because I do – it’s important. Yet I find myself doing everything else but sitting down to write about my visit. And I’ve been questioning why that is. The best answer I come up with is simply I am tired. This has been a very long journey for our family. It is hard watching my stepmom get worse, knowing there is nothing you can do but be there for her & help make this easier – if you can.

Our family has been battling this disease for a decade now. We may not have had a name for it 10 years ago – but if we are all honest, we saw the changes in Jane. The forgetfulness, the bursts of anger over what seemed like nothing to us, the sheer frustrations she was feeling but not able to explain. Dementia is a horrible disease. When it first begins, it is hardest on its victim. Sure the changes Jane went through may have required extra patience on our end, but she battled the brunt of the disease. She alone dealt with the monster growing inside her head. By the time we had an official diagnosis – early onset dementia – Jane was progressed to a point that she didn’t fully comprehend what it meant. She used to tell me, “Motley has dementia.” Motley was their dog.

As the disease progressed, the burden began to shift. I hate that word because none of us caring for Jane sees her as a burden. But the weight of the responsibilities, feeling the impact of the disease – shifted more heavily to those who love her. That’s the thing about dementia. It doesn’t just torment its victim but all those who love & care for it’s victim.

Today, I don’t know how much Jane is aware of her disease. Does she remember what her life was like before dementia? Does she know it has basically robbed her of everything? I visit her & I mourn the life she has lost – but does she see it that way? Or does she simply live in the moment? Is she happy because someone she loves is sitting beside her? Does it bother her that she doesn’t remember my name or that I am her daughter? She may forget about me the moment I walk out the door, yet each time she sees me & her eyes connect with mine, I feel her love & I know she feels my love. Is that enough? Am I making this harder on me emotionally than it needs to be?

Yesterday we were back to our regular norm. Jane was quiet & kept to herself. It took some persuasion to get her to open her mouth for the first bite of her cupcake. Had she forgotten how much she enjoys cupcakes? If so, she quickly remembered with the first bite because she happily ate the rest. I could tell, she was somewhere else though – there was no real light in her eyes. She did connect with me a couple of times & smiled, but the smile never reached her eyes. The disease was winning.

After lunch we walked outside to the courtyard & sat under the trees. As we walked up, a dove was cooing a song. Was it our dove? He was high in the trees so I couldn’t tell. Our dove would come to visit again so it may have been him. You may think all doves look alike – how can I tell its the same dove that visits us every week? Our dove has a unique black mark on his neck that none of the other doves who live in the trees at Jane’s posses. I tried to get a close up pic of him yesterday as he walked right in front of us, but my iPhone failed me. Maybe next time.

Jane walked slowly to our chairs under the trees & right after I took this picture, she closed her eyes. When my dad texted us, she was trying hard to sleep & didn’t have a response for him. She would quickly fall asleep & sleep our entire visit. Some visits are just this way. I talked with a few of the residents as they walked by & then woke Jane from her nap when it was smoke time. The smoke group keeps dwindling in size & one of the gals told me they are now down to just 3 smokers in the facility.

I struggled to get Jane to her feet. She wanted to stay there under the trees sleeping. And as much as I would love to spend the day sitting with her talking to the birds, I had work that needed to get done. It took the assistance of another to get Jane to her feet, but once she was up, she was able to walk with me. She still has her stubbornness!

As we walked inside, Jane wanted to sit in a chair in the great room. Her caregiver rushed over because Jane was attempting to sit on the arm of the chair – not in the actual chair. We moved her to the couch (because this chair was dirty) but it took both of us to get her sitting on the couch. I have to admit – I do worry Jane is going to fall one day. I try not to think about it.

Once Jane was settled on the couch, I kissed her goodbye. She closed her eyes – no squeeze of my hands, smile or even leaning in to my kiss. I wonder – will this disease take her mind away completely before it takes her life?