4-2-2023 Tomorrow is Linda’s last day on hospice (again)

Two Fridays ago, the hospice nurse warned me that it was unlikely they would recertify Linda for hospice after this week. On Wednesday, the nurse confirmed it--tomorrow will be her last day on hospice. When this happened last September, we were left a bit scattered, trying to figure out how to manage her care going forward. This time, while it's still unsettling to no longer have the hospice "safety net" of services, we at least have a little more experience to know what we need to put into place.

First, once I heard that Linda was likely to be discharged, I checked to see if there was still an opportunity to upgrade her Anthem insurance to a PPO (instead of her current HMO).  The period to switch plans didn't end until March 31st, so I took the opportunity to switch her to a PPO (although it required a two-hour phone call with an insurance broker!). I made this switch because her HMO does not cover palliative care--which came as an unpleasant surprise last September.  But the new PPO does include that coverage. So, this time, she will be able to remain under the care of Pathways Hospice and Palliative Care. Palliative care does not come with many services--it basically entails a nurse who will come to see Linda once a month (instead of one to two times a week for hospice). But this at least gives us a someone to call in case of emergency, other than her primary care physician.

I might also look into the possibility of physical therapy. Even if she qualified for just the initial two-week period, it would be something. 

Next, we need to make arrangements for the medical equipment. Hospice covers the medical equipment rental, so I need to look into purchasing a secondhand hospital bed and a new low-air-loss mattress for Linda. When she came off hospice last time, the rental cost for that equipment alone was high, even with insurance ($170/month), so it might make more sense to buy the equipment outright. In fact, I wish we had done that before, given the money already paid out.

Finally, on top of transitioning off hospice, we're going to be navigating a change in caregiving--I'm signing on with a new home care agency to take care of Linda for five hours a day on Tuesdays and Wednesdays. This will cover at least some of the hours that our previous caregiver had worked. It's going to be stressful to have to get used to new people, and we will likely be getting different caregivers on different days, depending on who the agency has available. But we also will have someone to call for backup, if one of our longtime caregivers can't make it in. I just took a night shift last night, for exactly that reason, so it will be a relief to know we can call the agency for caregiving coverage when needed.

We are nearly two years into this journey, and things are no more settled than before! As always, I'm not sure what's coming--Linda's condition is so strange, in that she is both defying the odds and succumbing to her condition. She will be completely off supplemental oxygen one day, and absolutely need it the next. She can be comparatively alert and in good spirits one day, and confused, lethargic, and moody the next. When I wake up in the morning, there's no way to tell which way the day will go. So we're just going to take the best next step that we can. 

I will post an update once we have our post-hospice care routine ironed out!