One Journey After Diabetic Coma

It has obviously been a very difficult two weeks--the hardest of them all, and I suspect it will only get harder, at least initially. We arranged for Linda's cremation, and we have been trying to process that she is no longer here. I know that in past posts I had described how strange it was during the times when Linda was in the hospital, with the caregivers gone, the oxygen concentrator off, and the classical music no longer playing. But we knew that was temporary. It's quite a different kind of quiet when we know it's permanent. I found a 2019 voicemail on my phone that she left me wishing me a happy birthday. I'm grateful to have this message, but it was also difficult hearing her voice from such a different time, when none of us knew what was in store. Many have asked us about a service--in the past, Linda had told us that she didn't want a service (although one can't be certain that she truly meant it). Not to mention that a service is more for those who l...

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 H...

Happy birthday to Linda! (Tricia) This past weekend we celebrated Linda's birthday--I can't believe that this is the second birthday we have celebrated with Linda since all of this began. She received some lovely cards from family and friends, and we brightened her room with flowers and balloons. When we asked Linda what she would like for her birthday lunch she answered quickly and specifically: "Calzones!" Normally, when we ask her what she would like to eat, she almost always says either "I don't know" or "Nothing," so the fact that she had a preference was a nice change of pace! We ordered calzones from one of our favorite restaurants, had her favorite dessert (cheesecake!), and then watched episodes of "Wednesday" on Netflix, which we really enjoyed.  Linda's oxygen levels continue to improve, to the point that we no longer keep her on oxygen during the day. Since we have taken her off or reduced three of her medications that...

  A frosty morning in our backyard last week.   (Tricia) Linda has been slowing down since Christmas, with the exception of last week, when she had a few days where she seemed to have more energy. She even managed to recall events in a way that she had not been able to before. Not only that, she actually agreed (and, in one instance, asked) to do her exercises, and did a good 15 minutes of simple strength moves on three different days last week, which surprised me! We attributed that to the fact that we have suspended one of her more sedating medications--the one controlling her heart rate--at the recommendation of her primary care doctor. He thought it might help her regain some of her energy. Because the medication stays in the system for a couple of months, it is safe to stop for a short period of time. Last week, we also rented a wheelchair-accessible van to get Linda to her follow-up appointment with her infectious disease doctor and nurse practitioner (one for C.diff, on...

(Tricia) Since Linda came home from the hospital in November, it has been much quieter than it was before she went in.  No more physical therapy, very few nursing visits. Hospice started up again two weeks ago, but Linda has turned down most services (such as the bath aide and chaplain). She has been telling us that she wants to rest, so we are giving her that. She does get up in her wheelchair almost every day, which at least gives her a change of scenery. Last Tuesday, we did take Linda to a previously scheduled doctor's appointment with a neurologist specializing in cognitive issues such as brain injury and dementia, at a practice is called the St. Louis Center for Cognitive Health. I almost canceled the appointment, because I didn't think much would come of it. But this was an appointment I had rescheduled after canceling one in July the last time she was in hospice (and I had made that appointment in March-- the joys of American healthcare). When I canceled the July appoin...

(Tricia) After Linda's being in the hospital for two weeks and the house being empty of caregivers, it is now strange to have slipped back into the old routine. But we are back into an odd kind of rhythm, with Linda's movies and classical music (now classic Christmas music--love Bing Crosby) playing into the late evenings, and her occasionally yelling out for me or Marilyn to come save her when she doesn't like what one of the caregivers is doing! Over the weekend, we put up the big Christmas tree in the family room, and a small Christmas tree in Linda's room, decorated with crocheted angels that she used to make us as gifts every year. So, that makes the house a little more festive.   Linda's "angel tree" (It looks a little wonky because it toppled over last night when one of base supports broke! It needs a little TLC to straighten everything out again) Although Linda had the hospice evaluation last week, we have not had the formal intake, so we are no...

(Tricia) I wasn't sure whether to have Linda discharged yesterday or to wait until Monday to have the drain (which they tell me is nonfunctional) removed from her right side. At the advice of her primary care physician, I finally decided to discharge her yesterday and worry about the drain later. Unfortunately, we couldn't schedule an ambulance to bring her home until 8:30 last night, but we did get her home and settled by around 9:00. Her hospice intake will be late afternoon tomorrow. Linda had been fairly alert and interactive in the hospital, and we had hoped for the same once she got home. But all day today, she has been quiet and moody (for good reason, of course). She has not wanted to be bothered by anyone--she just wants to sleep. She did wake up enough to eat lunch (she asked for two peanut butter and jelly sandwiches, of all things!), but she's asleep once again now. Perhaps she needs the rest from being in the hospital for so long, but it's very hard to tell...

(Tricia) Once Linda's CO2 levels had been lowered and she had become responsive again, I thought that they then would discharge her.  But the hope we had last week that Linda would pull through from this episode and come home as she was before the CO2 built up has been fully dashed, unfortunately. It started on Thursday, when the pulmonologist on call said that they wanted 1) to try to clear Linda's drain so it would be functional again and 2) break up some scar tissue that was holding in some "loculated fluid" in her right lung--in other words, fluid that is walled off with tissue so that the drain cannot reach it. He said he wanted to inject what is called "TPA," a blood thinner, into her lung cavity through the drain. The TPA would both clear the drain and remove the scar tissue, which would release any remaining fluid to be drained. I asked him what the complications of that procedure would be, and he told me that there could be some bleeding and tempor...

(Tricia) Linda's still in the hospital, but everything is stable. When she was first admitted, they first moved her from the ER to a regular room,  where she stayed for all of about three hours before the doctor on call decided to move her directly from that room to the ICU. All of that confusion was a bit frustrating. But they took good care of her in the ICU, and with all of her vitals in good shape, they moved her to a regular room this afternoon.  The CO2 levels in her blood, which had reached critical levels at the time we had her taken to the ER, have normalized. Now, she's on an oral antibiotic and a nebulizer treatment for a slight case of pneumonia, and they're trying to figure out how to make the drain, which the doctors at St. Mary's installed back in April, work. If they can clear any obstruction from the drain's tubing, they can remove any fluid from around her right lung. But she's awake, eating, and talkative, and she says she's not having a...

(Tricia) When Linda became unresponsive last Friday, we weren't sure what to do. On the one hand, when she wasn't waking up, we knew something was obviously very wrong. But on the other, we knew that if she had still been on hospice, we would not be taking her to the hospital to be treated. We would just let whatever it was run its course. It is one of the most difficult aspects of this very difficult situation: How much is too much? When is enough enough? I know there is a reasonable argument for not putting Linda through more treatments. But where I struggle is when the "treatment" is something relatively simple--an antibiotic for infection, for example. I often don't know what the right thing is to do. When we're talking about caring for someone in a fragile state (and, to be honest, someone reaching end-of-life care), each decision is especially harrowing. I guess that reality, though, means that there are really few "right" or "wrong" ...

(Tricia) On Thursday, we had Linda sitting up in a chair in our front room, when she said, as she often does, "Please take me home. Let's get in the car and go home." Sometimes, I will ask her to clarify (because, sadly, "home" can have multiple connotations in this situation), but she always says she wants to go back to Mountain View. And it breaks my heart, because even if we did arrange for an ambulance to take her back to her home in Mountain View, I'm not sure how I would set up the same network of care that she has here. Plus, I think when she says, "Take me home," she really means, "Take me back to the independent life I had before." Which, of course, is not possible. It all makes me impossibly sad. Then, yesterday, Linda gave us all a scare, and none of us knows exactly why. I think I mentioned in the last post that her oxygen rates now plummet if she is off supplemental oxygen for even a short period of time, and she seems...

(Tricia) I know it has been a long time since the last post--things have gotten especially tiring as Linda received all of her therapy appointments. Plus, she has had a couple of very up-and-down weeks. For the past three weeks, Linda has been receiving two sessions of physical, occupational, and speech each week. However, she has been discharged from both OT and speech, so she now will only have PT.  Insurance has approved only three more sessions of that, pending her doctor submitting new orders (and the insurance company, of course, agreeing to them). In the meantime, in the "good news/bad news" category, about a week and a half ago, Linda was able to take a few assisted steps with her walker, which took her caregiver and me by surprise.  We thought we were just assisting her to stand, and she just started lifting one leg, then the other! However, Linda was still quite unsteady on her feet. She thought that she could make it the five steps or so from the chair to the bed--...

(Marilyn) We've had quite a bit of cold weather lately -- a reprieve from the 100 degrees we've been having.   I haven't been over to see Linda a lot.  She is doing remarkably well but still has cognitive issues and also can't walk.  This morning she wanted to call me because she said I was supposed to be over there to pick her up to go to the zoo and wanted to know why I was late.  LOL. And, of course, she constantly wants to know why Mother isn't there.   But she has been relatively busy with physical therapy and occupational therapy and nurses coming and going.   I finally started taking the Parkinson's drug (levodopa) a few weeks ago, and am having a few side effects: extra tremors. massive headache, insomnia, and aches and pains that I haven't had before.  But so far all in all I think the medication is helping me walk better.  Time will tell.

(Tricia) I am still incredulous that six months ago, Linda was placed in hospice and given just two months to live, and today, she is out of hospice, receiving physical and occupational therapy, and making incremental but consistent progress. We did not think we'd have another holiday season with her. If all things continue as they are, and we all have another Thanksgiving and Christmas, it will be amazing. At the same time, I am well aware that Linda's health is still fragile. A bad outcome is always just one episode of C.diff or one infection away--or, as she becomes more mobile, one fall away. We are always on the alert--today, for instance, she is lethargic again and can barely open her eyes. Normally, we would have gotten her up in the wheelchair by now, but she has been in bed all day. All of her vitals are fine, and there are no signs of any underlying illness. She says that she feels fine, but that she's just really tired. So, we can just hope that it's nothing ...

(Tricia) I just wanted to post an update about how things have gone since Linda was discharged from hospice last week. We took Linda in to see Dr. Kevorkian on Saturday, and he decided he wanted to wait to remove the drain in her right side until she was at home and lying down. So, he's actually going to make a home visit this Thursday for the drain removal. He also has now established the start of insurance-covered PT -- they will be coming in to evaluate Linda on Friday. This is bittersweet, because we really like the private pay therapist who has been working with Linda to this point. She has helped Linda improve considerably, and she seemed genuinely sad today when I told her about the switch.  But I am having her come at least one more time (on Thursday). From there, we'll see how St. Luke's Home Health's PT services work for Linda.  Today was a PT day as well, and it went very well. Linda sat up on the side of the bed with some assistance for 10 minutes--a record!...