One Journey After Diabetic Coma

(Tricia) Once Linda finished her two-week round of vancomycin two weeks ago, which was treating the C.diff that sent her to the hospital last month, we kept our fingers crossed. Even though history was not on our side, we truly hoped that somehow, with enough yogurt (to add "good bacteria" to the gut) and hopeful thoughts, we could keep C.diff at bay. And, in fact, we had a good ten days or so where everything had seemed to stabilize, and Linda seemed a little bit stronger and in better spirits. And, of course, she and Hopscotch have continued to bond in the cutest way. Here is another one of their moments :-) : With Linda, things have always been relatively OK until the very moment they're not. And, on Saturday afternoon, things suddenly weren't OK anymore. The C.diff returned as it always has with Linda--suddenly and definitively. To make matters worse, this was preceded on Friday by another problem with her catheter, where we had to call the hospice nurse to come o...

(Marilyn) I know you don't hear my name much but I have been trying to do a little bit by bringing lunches for Tricia and the nurse and then maybe watching a movie with Linda.   Linda and I used to enjoy watching really hokey movies together. So we watched "Pirates of Penazance" with Kevin Kline.  And we watched another one called "The Boy Friend" with Twiggy.  She dozed off periodically but I think it brought back some silly times. One thing that is kind of funny is when she associates what is on TV with real life.  For instance, she said "Marilyn, please take me to Skyrizi."  And she swears she sees people driving through Tricia's front yard when it is actually cars driving by on the street.  The brain is a very complicated thing. I am spending lots of time on my journey with Parkinson's, which also involves the brain, only in a different way..   Tricia tells the story well, but I thought I'd throw in a few peripheral things from my persp...

(Tricia) I know I haven't posted in a while--we have just been trying to catch our breath!  Linda has been back at our house from her last stay at the hospital for about 10 days now, and in that time, we have settled into a semi-routine. We still have caregivers here to provide support day and night, but if things remain calm, we will hopefully be able to dial that back soon. During Linda's first round with hospice, I originally had worked with a local private-duty nursing agency. But while Linda was in the hospital, I decided to call an end-of-life doula for further advice in navigating this difficult situation. She was the one who recommended I talk to our current caregivers (the same who took care of her mother in hospice), and I ended up making the switch. We currently have three women who take different shifts helping us with Linda, and all are very friendly and good with her.  Linda also has had regular visits by caregivers of the feline variety (see Hopper's handiwor...

(Tricia) Linda has now been home since last Thursday, and once again, we’re trying to establish some level of stability and routine. But we’ve still had some tense moments.  Our furnace and air conditioning decided to stop working about a couple of weeks ago—given that it was spring, we thought we had enough time to replace it before it got too hot, but then we saw the forecast. Of course, in St. Louis, the temperature would hit the 90s in early May! We had to go with the one company that could replace the furnace and A/C quickly, but even then, the company could not get to us until Tuesday. That meant we had to make it through an 85-degree day on Monday and a 90-degree day on Tuesday, until the new unit was installed. We thought we could make it by using fans and keeping the curtains drawn, but by mid-afternoon on Monday, the house was already up to 78 degrees. Linda’s room was still at around 76, with the fans going. But when the hospice nurse came, Linda’s oxygen levels had drop...

(Tricia) It has been a difficult week. The sudden onset of the C.diff really threw everything off course, and poor Linda had to deal with even more disruption and discomfort. The healthcare providers at Missouri Baptist were able to get Linda's C.diff back under control with a course of vancomycin. However, her infectious disease doctor refused to consider any further treatments for the C.diff (such as a fecal microbiota transplant). He actually refused see her again at all, but only sent messages through the hospitalist. The hospitalist also kindly shared with me that it was the infectious disease doctor's opinion that "the inappropriate use of antibiotics at St. Mary's" had caused the C.diff to recur. I can't remember if I mentioned here, but once St. Mary's started pumping her full of new antibiotics (to prevent things like MRSA and pneumonia--conditions Linda did not have), I immediately called the Mo-Bap infectious disease doctor's office to ask h...

(Tricia) Things just never stop changing. Yesterday, Linda developed a violent case of diarrhea. As I mentioned in the previous post, the hospice nurse didn’t offer me much in the way of guidance, other than to tell me that it was likely “a stomach bug” and that I “was doing such a good job.”  Overnight to this morning, the problem only got much worse. This morning, Edna, the wonderful caregiver that we have been working with, told me, “You have to do something. She can't go on like this.”  I called hospice again, and the hospice nurse on call admitted that this was beyond the parameters of the help they can provide. The nurse suggested I call an ambulance and have Linda readmitted to the hospital. With her hospital admission, Linda’s hospice status will be revoked. To me, it’s the ultimate irony that a patient can be too sick for hospice. Yet, here we are, trying to get Linda well enough for hospice. Marilyn and I are now with Linda in her room in the ER at Missouri Baptist ...

(Tricia)   We are still struggling to establish a routine in our care for Linda at home. One hospice nurse told me that it is "like caring for a baby." I never had children, but it seems to me that elder care is a harder responsibility, primarily because of the emotional toll it takes. I would think that taking care of a child most often follows a hopeful trajectory, in which the child grows and becomes stronger. Taking care of an elderly adult in hospice is absent that same sense of hope because the trajectory is in the opposite direction. On Tuesday, the hospice nurse assigned to us told me with a smile, "I always say 'Hospice is like a party.'"  When I asked her to explain, she said, "It's a party because it's all about making your loved one comfortable." I know she was trying to be upbeat, but I respectfully disagree. Hospice is many things, but it is not a party.   Linda has been hanging in there, but she very much hates having to be ...