March 27, 2019

Lunch with Jane:

Today when I arrived, Jane was at the kitchen table while Emely & Bindu were in the kitchen prepping lunch. Jane was far away & did not connect with me. She kept putting her finger in her mouth & sucking on it. I couldn’t get her to stop. She didn’t seem to be putting her finger in her mouth because something hurt – but perhaps more to comfort her? She was sucking on her finger like a baby sucks on it’s thumb. I thought maybe she was hungry – but even after lunch & her cupcake, Jane sucked on her finger. She did it most of our visit.

I talked with Jane during lunch & kept trying to get her to make eye contact with me. She just kept staring off in other directions. Several times she seemed to be following something with her eyes but there was nothing there. The doctors will say she’s hallucinating – I believe she’s seeing people we can’t. Whether its spirits of those who have lived in Jane’s house before or spirits of Jane’s loved ones who have passed away I can’t say. But I believe it’s more than hallucinating. There is a belief that as we get closer to death, the veil between this world & the next thins. It serves as a preview, if you will, of what is waiting for you on the other side. It’s calming & peaceful. Jane did seem very peaceful today.

After lunch, Jane & I headed outside for our visit. We took a lap before settling under the trees. Once Jane was settled & I sat in the chair in front of her, she finally looked me in the eyes & connected with me. She smiled & reached for my hand. But almost as fast as she recognized me, she was gone again. I sat with her, enjoying the nice weather, and talking about life. Sporadically my stepmom would connect & smile, only to leave again. People say victims of Alzheimer’s forget you. Jane hasn’t forgotten me – it’s just the disease steals her away. Its like it locks her inside so she can’t see out. When she gets that glimpse outside the window, she knows me, remembers me. But when she is locked away, with no view out, she is unable to engage. It’s not what I expected of the progression of the disease. Of course – I don’t know that I ever had any clear expectations – just fears.

I visited with Jane for an hour outside before we headed inside. I wheeled her into her bedroom so Emely & Bindu could change her. Luckily Jane is still able to stand so changing her diaper is manageable. Jane held onto her dresser for stability & once she was cleaned up, Emely asked her if she would like to walk. Jane didn’t say no, so Emely & I held onto her & guided her to the great room while Bindu followed closely behind with the wheelchair, just in case Jane looked like she would fall. Jane was able to make it to the recliner, though we did have to turn it to meet her. But this was a win today. It was only about 100 meters, but its been awhile since my stepmom has wanted to walk at all. Once we got her settled into the recliner, I kissed her goodbye & she closed her eyes. The other residents were making their way to the great room as well, so I believe Jane felt comfortable & included in the group.

At this point, Jane is the least active of the residents in her house, but she still enjoys their company. She feels safe here & comfortable. I don’t know if a time will come where we need to move her, but for now, she is content.

I don’t know how much longer I have with my stepmom. I don’t know what causes her to continue to fight to stay in this life. I don’t know what goes on in her mind or what she is aware of. There is much I don’t know. I suppose it’s one of the challenges with dementia. I do know I hate this disease. I hate how it slowly eats away at my stepmom, piece by piece. I hate to think she is suffering. I hate how helpless I feel in this fight.

I hate this disease.