As we shared in our July 30 blog post, our next big step is to expand our care team by bringing on in-home care support. We’d originally planned to get things rolling in August for a possible September start. As the extent of the Aug. 8 fires on Maui island became clear, however, we felt compelled to pause.
While recovery and rebuilding efforts on Maui will continue for months and years to come, the pace of ALS progression and its relentless thievery of José’s independence can’t be controlled. Simply put: the more proactive we are with care, the better he will fare. So as we draw near to José’s 60th birthday, we’ve made the decision to forge ahead with our plan.
As José’s needs increase, I continue to learn new things and manage it (mostly) single-handedly—from feeding tubes to hoyer lifts, nebulizers and vents, external catheters, suppositories, wound care and more. All of it can be both physically and psychologically demanding, and it’s now more work than one person can safely manage.
Having a dedicated home health aide will also free up some of my time for the increasing amount of patient advocacy required to ensure José’s care needs are met, as well as coordinate among members of his care team, and enable more ways for friends and family to get involved.
Our preliminary plan is to test the waters with someone to refine / work out the role during the last three months of this year (Oct.-Dec.) on a trial basis, with the hope of transitioning to a more permanent role if we find someone who’s a good fit.
If you know someone based on O’ahu, preferably in the Honolulu area, who may be a good fit, please share this opportunity with them.
This will be a significant out of pocket expense. To help us with the first few months of care, we’ve increased our GoFundMe campaign to reflect this new stretch goal and have some other fundraising plans brewing that we’ll share more about soon. So many of you have already contributed—in many cases, multiple times—since we first launched the campaign two years ago. Please don’t feel compelled to give again! Sharing the GoFundMe with others, sending words of encouragement, and supporting our ALS advocacy efforts are equally impactful and supportive.
With all our love and gratitude,
Jen & José
I see a pair of smiles that are showing a lot of strength, but a third one will make a HUGE difference!
I will share the link with a couple of folks here in CA that may have connections there or in the industry.
Have you considered posting online to nursing schools nearby?