April 12, 2019

Lunch with Jane – Friday edition:

My dad texted this morning while I was working out to say he was sick – could I visit Jane. We don’t want to risk getting her sick, yet we also don’t want her to go a day without a visitor.

My dad carries the brunt of the visiting. He sees his wife most days. I pick up a day every week & my brother & sister-in-law pick up a day every week. Jane’s best friend Joan also visits once a week as long as she is in town. Joan’s retired & enjoys traveling. I’m confident Jane enjoys hearing Joan’s travel stories when she returns.

Jane is lucky – she knows she is loved. Perhaps this is why she has never forgotten us – because we always show up for her. Or perhaps its because her family & friends have always been important & my stepmom chooses to hold onto them tightly. I really do hope a day does not come where she has forgotten us. Of course – if that day were to come, I don’t believe she would have any reason to fight to live. She would have lost her purpose.

Fridays & Saturdays are the weekend crew in terms of the caregivers. Emely’s shift is Sunday – Thursday. I never quite know what to expect when I show up & a different crew is working. I trust the facility where Jane lives, but I don’t know these people – nor do they know me. And it seems the weekend crew often change. Today when I arrived, Jane was sitting at the kitchen table. A caregiver was sitting next to her, about to feed her lunch. I introduced myself as Jane’s daughter & said “thank you, I can take it from here.” She just sat there. So I said it’s ok, I can feed my mom lunch, I don’t mind. She was still confused. She asked me if I had lunch for her & I said no – I’m going to feed her this lunch right here. She said “ok – I’ll go with you?” I said go with me where? I’m going to sit here at this table, once you move, and feed my mom lunch. Honestly, I was a bit annoyed at first. I mean I didn’t mumble or stutter. But then I realized, she is new to Jane. And likely she has never witnessed a family member feed their loved one lunch. And it made me sad. Yes, we pay for Jane to be cared for. Yes, we depend on someone else to feed her breakfast & dinner. But we don’t mind one bit feeding her when we are there with her.

After lunch I got Jane ready to go outside. The same caregiver was there to help me adjust Jane in her wheelchair & get her ready to go outside. She opened the door for me & then asked me if I wanted to go outside the gate. When I said yes, she rushed ahead to open the gate & hold it for us. I very much appreciate the assistance as it is not always easy to navigate the gate & Jane at the same time.

Jane & I headed to the trees where we sat to visit. At first she seemed distraught & a little out of it. I held her hand & squeezed it. She looked up at me & deep into my eyes. I saw the light flicker & the connection made. I said Hi! and Jane said Hi! and smiled. Wow! I honestly can’t remember the last time she said hello or greeted me with words. A good day, her greeting is a smile. But ask quick as she was there with me, she disappeared again. This damn disease!!!! We sat there, enjoying the nice weather, wondering if it would rain today or not. I talked to Jane about my race tomorrow, how I spent last night mapping out my training for the Berlin Marathon & everything else going on in my life. Jane listened, all the time holding my hand tightly.

I tried to take a pic for Jane to send to my dad, wishing him to get well fast. But I couldn’t ever capture a calm look on her face. She always looked a bit distraught. And that’s how she is most days. She has moments of peace, but most of the time, her face is scrunched up. She is not at peace. She is struggling. I can not tell you what she is struggling with as she is unable to tell me. Perhaps it is simply her constant battle with this monster we call dementia.

After our visit, I got Jane situated back inside, in the great room. Most of the residents spend their afternoons here & Jane likes to be with them. The tv is usually on, though I’m not sure how many of them actually pay attention. I hate this disease slowly picks away at its victims.