The new year has started with a flurry of activity on the home front, and José has continued a remarkable recovery from his emergency surgery on Dec. 15. He will be authoring a follow-up post in the coming week, but for now I’m sharing a few updates on new and evolving ways friends, family, and others in our care circle can get involved.
New ways to help
Wish list benefactors
We continue to find new tools and equipment to improve José’s comfort and well-being. Unfortunately, much of it is incredibly expensive. Even with a really good health insurance plan, the out of pocket cost for his care adds up to thousands of dollars each month. So we’ve created a Google doc to share some of these items that cannot be sourced through Amazon. We’ll update this list in real time as items are secured and new needs arise.
In some cases, we also struggle to find merchants that will ship to Hawaii (or shipping that doesn’t cost more than the purchase price of the item). To overcome this challenge, we’ve had friends and family based on the continent offer to receive these goods and then repackage and ship them to our home via USPS. If you’d like to be added to a list of folks willing to help in this way, please sign-up here.
Hands-on care squad
With Jose’s transition to tube-feeding as his primary means of nutrition, we’re pausing Lunch Buddies for now, but hope to find new ways for those based on (or visiting) Oahu to periodically drop-in for hands-on help. This will most likely entail a visit to our home on days that our caregiver isn’t available to support José with various needs such as setting up his eye gaze machine or assisting with other equipment on work from home days, or social visits that coincide with meal time and helping to set-up and oversee his g-tube feeding and other light personal support needs (which also provides a bit of respite for me to get some work done or tend to my own self care). As we reformulate these opportunities, we’ll also be transitioning away from the ianacare app to a new online coordination tool that we hope will be simpler for folks to access and navigate.
We had originally envisioned a fun and social “work day” at the apartment in December to knock out a growing list of miscellaneous home improvement and support tasks, that range from lowering a shower curtain rod and reinstalling a failed towel bar, to painting a barn door + attaching privacy sweeps to it, and installing a piano-wire photo display in a hallway. Instead, we’ve created a list of needs and hope to find folks who can help with items on the list as they have time.
Digital media team
We’d like to do a better job of using the Team José social media profiles (and this website) to share information about ALS, including research, advocacy, and other opportunities to raise the profile of and/or support people living with ALS–including their families and caregivers. There are several ways to help, including: collect or curate content to be shared on social media; write posts or create graphics; schedule and/or publish posts; acknowledge folks who share content or comment on posts, etc. We’d also like to share more frequent updates from and about José as well, so it could also involve helping to collect, organize, or publish photos and messages from José.
If you have experience with, a knack for, or would like to learn any of the following: WordPress, Gmail, Google Drive, Facebook, Instagram, TikTok, or other online communications or social media tools, please get in touch!