October 27, 2017

Friday lunch with Jane.

My dad is visiting my sister, niece & nephew this weekend so that means I get extra time with Jane! I know she prefers my dad but hopefully the cupcake somewhat made up for it.

I don’t normally visit Jane on Friday’s so I have never been to the cupcake store on a Friday. Man was it a zoo! This meant I was running late to get to Jane but luckily lunch was running late today too so Jane was just walking to the table when I arrived. She looked at me & gave me a big smile. Love when she does that! Today was vegetable stew, some sort of fried meat (probably chicken) & peas. Peas! Seriously – I wish once the cooks would actually sit with the residents then eat to understand what works & what doesn’t. Peas are really hard for the residents who are still able to feed themselves & hard for me to get into Jane’s mouth without dropping some in her lap. And she wasn’t really like the peas today either – so I didn’t make her eat them. I believe she has earned the right to eat whatever foods makes her happy. Who cares if she gets fat if it brings joy to her day.

I brought a new cupcake today but no time for a picture – Jane just wanted to eat it! It was called Wedding Cake – it was yellow cake with white frosting but had little sugar beads on top. Jane wasn’t quite sure what to make of the beads – I told her they were safe to eat. She enjoys trying new flavors but still says lemon is her favorite. After Jane finished we snapped a quick pic so we could text my dad before his flight left. Jane was happy to hear from him before he left town.

We went out for our usual walk. It’s nice outside today but Jane was walking really slow. We made one lap & then sat under the trees to relax. Jane held my hand & refused to let go but wasn’t very interested in talking today, so we sat mostly in silence. I noticed Jane was very grumpy which is not normal for her. She got angry anytime I spoke to someone else – another resident or the staff – so we mostly kept to ourselves today. After sitting under the trees for awhile, Jane wanted to walk again so we did. This time she stopped at the clubhouse. I asked if she wanted to go inside & sit & she nodded yes, so that’s what we did. Jane kept putting her hand up to her head, like her head hurt. I asked her if she wasn’t feeling well but she didn’t seem able to respond. As we sat in the clubhouse, I rubbed Jane’s head for her. She really enjoyed that & leaned in closer to me. At one point she even rested her head on my shoulder & she never let go of my hand. We sat there for about 15 minutes before Jane was ready to walk again. This time we took the long way back to her house. Myron (one of Jane’s housemates) was outside when we came up to the house. I asked if he was ready to head back in & he said yes. He’s in a wheelchair & needs help getting up the hill to the door. Normally Jane will allow me to help him – but not today. I told Myron I would get Matt (one of the caregivers) to come help. Luckily I found Matt quickly. I always feel bad & want to help the other residents, but Jane is my priority & if she does not want to share my attention than I respect that. Sometimes I will sit & chat with some of the other residents after I leave Jane. I know they all just want to feel special. If I had more time I would sit with each one of them individually & talk. I don’t know why more family members don’t come visit more often. I am grateful I am able to visit Jane every week, grateful my dad goes every day someone else isn’t there, grateful Jane has a couple of friends who go visit her. I know it matters to Jane – it makes a difference in her quality of life. And isn’t that what we all want?

I am always very honest with Jane. I call it like it is with her – she would want nothing less. So I teased her about being grumpy. I kept calling her Bosco (my grumpy dog). Every time I did that it would make her smile. I’m glad even when she isn’t having a great day I can still find ways to help her smile. I’m hoping Jane is simply having a bad day & that’s all that is wrong. When Jane & I went inside after our walk, I found Beth – a super attentive caregiver who works the weekends. I told her I thought Jane had a headache & could she let the med tech know. Beth said of course! Then told me Jane didn’t want to take her morning nap & normally she loves her morning nap so she felt Jane had felt off all day. She said she’d keep a close eye on her. It’s hard when someone else is caring for your loved one. I am so grateful for the caregivers & the fact they seem to genuinely care for my stepmom – and all the residents. This disease really teaches you to trust others for help.

I hate this disease.