May 12, 2019

Mother’s day lunch with Jane:

Matt, Marianne & I all stopped in to see Jane for Mother’s Day. And M&M brought cupcakes for everyone. We even were able to face time in our sister Bobbi so Jane got to see all of her kids.

It wasn’t the best day for Jane. The disease was winning, but she was fighting hard. From time to time, my stepmom would win the battle & be present with us. Today is also Bobbi’s birthday, and when Matt sang her happy birthday, Jane did her best to sing along. And when we said goodbye to Bobbi, Jane reached out like she was trying to reach for Bobbi. I don’t think she understands the concept of phone & video chatting. She could see & hear her daughter – not sure she understood why she couldn’t also touch her daughter.

We have to sit in the clubhouse to FaceTime because the wifi signal is strongest there – but it was loud & busy. It never ceases to amaze me the amount of people who come on holidays – but not any other day. So when we were done chatting with Bobbi, we headed outside to chat under the trees. Jane enjoys it & today we got to watch dark clouds roll in. Where were those clouds for my run this morning?

The look on Jane’s face when she has bad days, worry me. She seems distraught. Is she feeling pain or frustration or do her faces all tie to her battle to be present on days the disease is locking her inside? These are the days she sticks her fingers in her mouth & sucks on them & scratches at her ear like it hurts. I’ve looked inside her mouth & inside her ear – there is nothing I can physically see causing her pain. So is it something we can’t see? Something maybe inside her head?

There is so much we don’t know about this disease. And Jane is not able to tell us what’s going on. We do our best to comfort her & be there for her & have the med staff watching these behaviors. It can be frustrating. And trying to determine what’s going on needs to be weighed by Jane’s DNR. We want to keep her comfortable, but we know we can’t heal her so we also don’t want to slow down her natural progression at the end. There is no point in running a bunch of tests which is only confuse & possibly scare her. The hospital scares her.

I hate this disease.