December 26, 2017

Tuesday lunch with Jane:

My dad is taking a few days to spend with my niece & nephew (his grandkids) so I got to spend lunch with Jane today. It was a rough day.

When I was walking in, an ambulance was pulling in – never a good feeling. I don’t know who it was there for, luckily not any of the residents I know. I didn’t see Jane when I walked into her house so I asked Matt (one of her caregivers) if she was in her room. He told me they had bathed & changed Jane earlier but she fell asleep on the couch after so he had put her back to bed. When I walked into her room, she was sound asleep. It took a couple of minutes for me to wake her & even then she wouldn’t move until I told her I had a cupcake for her. Luckily – that did the trick. She reached for me & allowed me to help her get up & walk to the kitchen table.

My dad made a standing rib roast last night for Christmas dinner & he asked me to bring some for Jane. In addition to the prime rib, he also sent 2 deviled eggs & a crescent role. I supplemented this with green beans & sweet potatoes which her home was serving today. Jane seemed to really enjoy her special lunch & ate really well for me. However, she did not want to drink anything for me. I began with her juice & she didn’t seem able to swallow it. Matt (her caregiver) thought it was simply because she didn’t like the juice so he handed me a glass of water for her. She took one small swallow & that was it. She doesn’t ever want to drink a lot of water or juice, but I’ve never struggled for her to drink it for me. Was she having a hard time swallowing liquids today? She’s not combative & she ate her food fine – chewed her food & swallowed without even a hint of struggle. It makes me wonder what was going on with the liquids today.

There are a few new residents to Jane’s home. One can be quite a handful. Today she kept yelling. Her word is obviously. Everything is obviously. “Obviously no.” “Obviously I don’t want to eat.” “Obviously I will not eat.” And it goes on. She did not stop talking the entire time I fed Jane lunch. It was getting on my nerves & many of the other residents were becoming agitated. I wanted to get Jane outside so we could have some quiet time together. As I held the door for Jane while she walked outside, obviously woman kept yelling at me to shut the door. I was grateful for the escape. And it caused me to stop & feel thankful Jane is not a challenge. Visits like today are hard on me emotionally, but I never struggle with Jane. She is calm & appreciative.

I knew Jane was tired so we simply walked to the clubhouse today. We were about halfway there when Jane stopped & looked me deep into the eyes. She smiled – she recognized me. It was the most engaged she would be with me the entire visit. When we reached the clubhouse I asked if it would be ok for us to go sit down inside & she said yes. We snapped this pic quickly, but Jane was too tired for anything else. I put the phone down without texting my Dad & simply put my arm around Jane. She leaned her head on my shoulder & leaned in to me. I think it made her feel safe. She began to make an odd sound. At first I feared she was struggling to breath. But I quickly realized that was not the case. I think she was crying. It is the sound you make when you are crying really hard. No tears were coming down her face, but her eyes were squeezed tightly closed & emotionally I felt her deep sorrow. I held her tightly & she calmed down & fell asleep. I sat holding her while she slept for about 45 minutes. She did not wake on her own – I had to wake her.

It took some persuasion to get Jane standing up so I could walk her back to her house & lay her down in her bed. She struggled to step outside the door leaving the clubhouse. The disease was winning & today was a real struggle for my stepmom. As we were walking up to Jane’s house, Matt saw us & opened the door for me. I said she fell asleep on me in the clubhouse so I’m going to put her back to bed. He didn’t say anything – just followed to help me. I was grateful for the assistance. He left us quickly once we had Jane in bed. He knew I would tuck her in & make sure she is settled. Emely wasn’t there today – it was another female caregiver. I don’t know her name – she is rarely there on days I visit. She followed Matt & I into Jane’s room & was making a lot of noise doing something in Jane’s closet. It was upsetting Jane. She stopped & then just hovered over us. I said “I’ve got her” & she still stayed. Finally I said “it’s ok – I will take care of my mom – please leave us.” It was awkward & I was not in the mood. I appreciate she was simply trying to help, but these are the times that feel extra hard for me. I just want to cry in privacy while I put Jane into bed & prepare to leave her. I don’t need someone watching over my shoulder. Most of the caregivers are incredibly sensitive to this & do an amazing job so I am not complaining. Simply sharing so you understand the struggles I feel at times on this journey.

Yesterday was a big day for Jane. She had many visitors & she was engaged with us. I know she had enjoyed the special day. However, I knew that also meant she would likely pay for it today – which she did. It takes so much out of her to engage like she did yesterday. I know she wouldn’t trade the visit for anything, but I also hate to see her suffering like she was today. I am hopeful the extra sleep today will help her have a better day tomorrow. I kissed Jane on the forehead before I left & I told her the rest would help. I also asked Matt on my way out to have the med tech check on her when she came by as Jane’s face felt very warm to me. It is likely nothing but I always prefer to be cautious.

I hate this disease.