January 16

True to form, dad went another day without a shower. As people have shared in comments on this site, this is a characteristically Ken thing to do. In his defense, the treatment leaves him depleted early on in the day, so when the shower was offered to him around noon, he was too zapped to accept.

Dad also turned down his appointment with physical therapy this afternoon, as he felt unable to successfully go through the exercises. Dad’s increased exhaustion corresponds to his treatment, and was anticipated by the team of doctors attending to him before he was discharged two weeks ago. After his surgery a three weeks ago, dad was sent to Santa Clara Valley to receive two weeks of rehab before starting treatment, but this had to be cancelled due to his brain swelling / ICU admittance. So, his continued exhaustion may mean a significant pause in his PT/OT/ST until he finishes treatment in 5-6 weeks. This finding is disappointing, but fortunately he has been transferring from chair to bed to toilet to car smoothly and without as much dependence on another. I imagine this can be explained by a combination of his own conscious accommodation for his disability, as well as his physical as well as neurological recovery.

After radiation today, I took dad to get his haircut and beard trimmed at regular barber in Palo Alto. It was definitely time for this to happen: dad usually gets a haircut every two weeks, and he’s been in the hospital for over a month. He was very shaggy. He mentioned afterwards that lately, small things like haircuts and good meals have been really important to keep him feeling some sense of normalcy in this new context. We also picked up some Peet’s on the way home. Back at home, he asked to move to his hospital bed to rest before Bob Marshalla and Danny, our new caregiver arrived an hour later.

Thanks to my aunt, Andy, we got in touch with Mele, Celina, and Danny for caregiving support. I met with Mele and Celina yesterday, and got through the logistics so that Danny could come by and work today. As a family, the three rotate shifts and work together with their clients. It’s small-scale and family based, and I found them to be very genuine and warm. Danny came by today, and mom and I spent some time going over the routine and discussing various needs and tasks for the day. He’s relatively larger than any of us (he moved packages and washing machines into place that I’ve been trying to push into place for a week now), and so gentle and caring. I loved him, as did my dad, Carol, and my mom.

Adding further luxury and love to the day, Carol made my dad and Jon Zimmerman (back in town for the weekend) a great dinner: pork chops, mashed potatoes, and green beans. The goal of each day is to stuff dad full of as many calories as he can handle, as he continues to lose weight. Dad went back to bed happy and full.

So many thanks to Dave Cohan for assembling, researching, measuring, and reassembling the ramp out our front door. Thank you for solving otherwise precarious wheelchair exit/entrance down/up a series of stairs!!!!!!

Tomorrow he goes back to radiation, and will hopefully agree to a shower. Jon Zimmerman and David Clark are in town for the weekend, and will take him on PG versions of adventures he loves.

With love,
Mikaela

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