One Journey After Diabetic Coma

It was both not sudden and sudden at the same time. She fought so damn hard. But this morning, her lungs gave out and we lost her. Yesterday, we thought she actually had been getting better--she was able to eat and interact with us for the first time in several days. It didn't quite rise to the "rally" many say that people have just before death--she was still struggling--it just seemed that she was improving.  But this morning, she was still the same when the caregiver left at 6 a.m., as well as when Ed checked in on her around 6:30. But by 7:15, her breathing had begun to be labored. By just after 8, she was gone. But at the moment she left, we were holding her hands and telling her how much we loved her. Her journey is over--or just begun, depending on what you believe. Thank you so much for all the prayers and support. It has meant more to us, and to her, than you'll ever know.

This UTI, which seemed mild at first, has just gotten worse and worse. Linda has gone from being interactive and talking to being largely unresponsive, all in just a few days. Her hands and arms are starting to swell--one of our caregivers, who is also an RN, says that is often a sign of kidney failure. Today, all she has eaten has been a couple of small bowls of yogurt and some smoothie. She has taken it in with eyes closed as we've fed it to her. Otherwise, she no longer speaks and is too weak to move. For whatever reason, the antibiotics do not seem to be working this time. We will continue to hope, but her condition is not looking good. Thank you so much for keeping Linda in your thoughts. 

On Monday, the very day Linda was discharged from hospice, she tested positive for a urinary tract infection. UTIs can wreak havoc on the elderly, and Linda is no exception. We contacted her primary care doctor, who immediately started her on antibiotics, but she has been lethargic and largely unresponsive for the past three days. She wakes up briefly here and there, just long enough for us to give her medications and a little food (a smoothie and toast, or a cookie), before she goes back to sleep. As her body fights off the UTI, her blood sugar has gotten incredibly high and her breathing has worsened, so we have increased both her insulin and her supplemental oxygen. At the same time, a representative from Pathways, the agency we used for hospice, called today to give me some bad news. With Linda no longer on hospice, my hope had been to transition her to Pathways' palliative care, so we could still have nursing support. We found out last year that their palliative care team didn

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.

Linda's brain injury has brought with it a host of maddening symptoms, but one of the most prevalent is that it has made her not just unable to remember people's correct names, but at times seemingly unwilling to. This has been especially true for Ed's name.  For some reason, her brain is convinced that there are actually two males living in this house--one named Roger and one named Ed. When we ask her what each one looks like, she points to Ed and says, "They both look like him!"  And, of course, when we ask the obvious follow-up question, "Then why do you think they're two people?" she will respond with some version of "Their hair is different" or "They wear different clothes." We don't know where this comes from. We don't think she's connecting Ed to her neighbor in Mountain View or our cousin in Indianapolis (hello to both of you!).  But the mix-up has been there since she first started talking after coming out of

  (Tricia) Linda has had a few really good days over the past couple of weeks, in which she was awake, alert, and joking around with us. Yesterday, for example, she was awake the entire day. She usually takes several naps, or even sleeps most of the day, so yesterday was incredibly unusual. Of course, yesterday was also a day that Ed and I decided to take a day trip to Carlyle, IL, so we missed most of Linda's alert time!  But it was nice to have a day out, in honor of Ed's recent birthday.  While we were in Carlyle, Ed was able to check his sailboat, which has been stored on supports, unused, for more than year. Normally, he comes to the lake several times over the spring, summer, and fall to sail, and we make a weekend of it at least once. But because of Linda's situation, he sadly put that on hold last season. After looking at the other boats stored by the harbor and talking a bit with the harbor master during this quick visit, we walked by the lake and then drove to Haz