April Update

What has been surprising about April is how fast things have changed. Every day revealed a new development and a need to respond quickly. 

Ken’s language began to be noticeably impacted earlier this year. By April, even with maximum context and the benefit of living with this man for over the past 17 years, I have significant challenges understanding what he is saying–though sometimes via voice inflection, I can catch a meaning. It’s now a function of asking questions in the right way so he can answer with a yes or no. Or giving simple multiple choice options so we can get the gist. 

While he got new glasses this month, due to cognitive difficulties I have to read the letters, cards and messages folks have sent to him but it makes him smile. He does still have excellent hearing and ability to discern aurally, so comedy/music videos and voice mails are great. And one of the best gifts has been friends & family taking the time to make personal videos and audio to share. From a hilarious sketch comedy video by his cousin to long-lost digitized musical gems from Ken’s college bandmates to check-in videos from friends to performance snippets of his brother’s new band, these are treasures he can still enjoy and absorb.

Mid-April we tried to take a small trip to central WA to Suncadia but Ken was unable to leave the condo at all thus we returned home a day early since it was clear the vacation wasn’t really working for everyone. It also starkly exposed how overwhelmed I had become trying to manage everything. Upon our return, I enlisted members of my vaccinated Portland-area immediate family to come help run the household, assist the kids and take some of the day-to-day tasks off my shoulders. It’s been a game changer for me and already Mom, Angela and Dad & Ann have been up here taking shifts. I can now better focus on elements that specifically need my attention as well as project manage Ken’s evolving situation.

We have also been lucky to have accommodating, vaccinated neighbors, family & friends here from near and far. With so little awake time and limited communication, it has to be about what kind of short visits make Ken happy and what makes sense for the flow of the household. Everyone has been gracious, low-impact and flexible which are absolute requirements at this point. Both kids are now in hybrid school programs, attending a bit of class in-person and remote which maintains a structure, routine and a sense of purpose. They have both responded positively to going to school and I am grateful for the safety protocols the schools are observing.

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Ken is sleeping a lot more because his brain is working very hard to compensate for the cancer. He wakes up only for meals and then will tend to have just a short “awake window” in the late afternoon. He gets so wiped out by basic activities (walking to the dinner table) and simple tasks (brushing his teeth, showering) so he’s really only awake for 4-6 hours a day. His balance and strength on his right side are noticeably weaker so we have responded by adapting the house to be safer and more functional for him. Having hospice already engaged has been a vital link to medical equipment (like a hospital bed, wheelchair, bath bench), occupational therapy and caregiving support. I also insist he use a walker now since he had a (luckily uneventful and non-injurious) fall the other day. We will now have an in-home caregiver come a few hours 5-days-a-week who is skilled and trained to handle semi-ambulatory people. The bonus is that Ken will get a break from having his wife telling him–yet again–what to do.

I think the thing I reflect most upon lately is deep gratitude that we have lived an interesting and full life together to this point. Pre-pandemic, we traveled and embraced unique experiences–even while we had young kids, even while there was work, even while sometimes it felt that we should get this and that done first. Because there are no guarantees for one’s time or health. I’m on a cancer caregiver forum and I have seen stories about folks who were waiting for retirement to take a specific trip or accomplish a specific goal, yet steps from the finish line, they get a cancer diagnosis and it changes everything. Naturally “seizing the day” and “you only live once” should be tempered by some prudence and planning, but I think about how I too assumed we’d have loads of time, which you do until you don’t. Everything is of course still limited by the pandemic about how far one can go and what things people can do. However, I would just say, know what/who is important and take action in the now, instead of perhaps waiting too long and missing your chance. 

Love, Kali