February 7, 2019

Lunch with Jane:

I worked yesterday afternoon so I didn’t have a chance to post my visit with my stepmom. She was alert & very present. The most present I have seen her in probably a month.

I’ve been having weekly lunches with my stepmom for the past 3 years. The facebook memories pop up more frequently now with our visits. It’s amazing to me how quickly time passes & how the struggles from a year ago are now no big deal – because we face bigger struggles. I didn’t know then what we would face in the future. I still don’t know. This disease impacts each of its victims differently so there really isn’t a playbook of what to expect. Does that make it easier or harder? I honestly don’t know. But at the same time facebook reminds me how many things remain constant – like the cupcakes. A year ago, I brought Jane the exact same cupcake as today. So in some ways, it feels like I am stuck on repeat.

Jane was sitting in her wheelchair at the kitchen table when I arrived. Emely was busy preparing everyone’s lunch but she had set Jane’s plate on the table. I went to the kitchen to grab Jane’s water & a napkin. I would realize later Jane had taken the napkin Emely set out & was hiding it on her lap. I have no idea why.

When I sat down next to my stepmom, she looked at me & smiled. I reached for her hand & she squeezed mine tight. She was present & happy to see me. Jane ate her lunch easily & drank her water. Some days drinking water is difficult, other days it’s not. This was an easy day. I looked at Jane’s shirt & I could see she had been drooling. I noticed this last week too. I watched her carefully as she ate, but it never appeared to be a challenge. And of course she enjoyed her cupcake. The cupcake always makes her happy.

After lunch, I grabbed a blanket for Jane & the legs of her wheelchair. I have no idea why the caregivers keep taking the legs (foot rests) off of her wheelchair. Jane is not able to walk – she needs the foot rests to hold her feet up when we go for a walk. Jane will move her feet off the foot rests when we stop – she does still have the ability to do that. Without the foot rests, she tries to walk her feet & it doesn’t really go well. It was a beautiful, sunshiny day in Phoenix, but the wind made it feel cold. They were cleaning the furniture in the clubhouse so Jane & I stayed outside. We made a big lap before settling under the trees. I sat our chairs to face each other so we could talk. We talked about my race on Saturday & I asked my stepmom what she thought I should wear. I gave her 3 options & she said yes to them all. I told her she was no help & she said yes.

After awhile, Jane was getting cold so we headed back inside. I sat with her until the caregivers were able to change her & then we moved her to a recliner so she could relax. I noticed Jane was drooling again. I asked Emely about it & she said yes, we notified the med tech about it but I haven’t heard anything more. I asked my dad to talk to the nurse about it as I did not have time to find Patty before leaving. Since I had to work, I had a time limit to my visit & I preferred to spend my time with Jane. The drooling does concern me. My dad chalked it up to her forgetting to swallow. But that concerns me as well. If she forgets to swallow, it could lead to much worse outcomes. I know we can’t control the disease – it is a deteriorating disease & it is going to continue to pick away at Jane. But I do not want her to suffer & we need to pay a watchful eye to these changes. I feel so helpless as I watch the disease progress.

As I mentioned at the top of my post, my stepmom was very present yesterday. This was the case our entire visit. While I love when she is present with me, it also means I feel her sorrow. When she is not present, she doesn’t feel the sorrow of the disease – she’s just there – kind of like a shell. When she is present, she is aware of what’s going on & my empathic abilities allow me to feel her sorrow. It is a deep & heavy sorrow. I do not want my life to end this way. I do not want to suffer in this way. I understand completely why Robin Williams took his life before this disease robbed him of the ability to make that choice. I know this is not the way my stepmom wants to spend her life. Yet we live in a world that doesn’t believe in assisted suicide. Hell – I can’t even get my dad to admit this is a horrible life & not the way his wife would want to go out – even though he knows her stubbornness & independence better than anyone. I begged my stepmom yesterday to stop fighting. To end her suffering. I reminded her that she has fought a really good battle & she has proven she is strong beyond belief, but this is a war she can not win. I believe there is a beautiful world beyond this one & my hope is once my stepmom stops fighting to remain here in this world, she will find peace. I wish we could find a cure. I have made peace with the fact that is not coming. Now my hope is for my stepmom’s suffering to end so she can find peace. A life of sorrow is no way to live.