One Journey After Diabetic Coma

(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 ...

(Tricia) We now have had Linda at home for five days, and it has been so very stressful, primarily because we are not medically trained to do many of the tasks required for her care. The hospice agency has been good for providing equipment and for checking in twice a week, but they offered no training on how to clean or reposition someone confined to bed, or how to use the lift to move her to a chair. We also are trying to care for a painful pressure ulcer that she developed while at NHC (another “wonderful” outcome of that stay....pressure ulcers are so serious, and are caused when providers do not turn a patient often enough. Yet another thing I know now that I wish I had known then). So, thank you, Google; thank you, YouTube; thank you, all the very many nurses we have observed and sometimes helped these many months—we at least have a little information to go on. We have been able to use the Hoyer lift provided to get Linda into a specialized reclining wheelchair (called a Broda cha...

(Tricia) We had thought Linda would be discharged into hospice care over the weekend, but a procedure to place a drain to aid with removing any fluid that might build up again around her lungs was delayed until Monday afternoon. That meant she was not discharged to our home until Tuesday morning. I met with the hospice nurse and social worker from the Visiting Nurses Association yesterday as well. They did their initial intake, but I have to admit I thought I would receive more help and guidance.  I chose VNA because it offered private-pay caregiving services, as well as hospice and palliative care, and I had let the coordinator know last week that I would want to set up caregiving coinciding with Linda's discharge, particularly overnight. We didn't find out until Monday evening that the VNA could not set something up that quickly. That meant it was a rough day yesterday, as I tried to put into practice what I've learned by observing the nurses at the many hospitals and fac...

 (Marilyn) Linda has gone through a lot and even though her brain damage has kept her from a lot of lucid moments, she has times where we have good conversations. When we talk about bringing her to Tricia's house -- which she has asked for many times -- she now said, "What if I don't like it there?" (with that mischievous smile on her face). Today she said, "I can't take this any more" -- heartbreaking... Yesterday she said that Mother was in the room.  Tricia asked her how Mother looked, and Linda said, "Dead!!" She also said something like "I want to go securely."  We haven't really been able to interpret that one A few days ago they needed to move her from her bed to the recliner, so they had to use the Hoyer which lifts her up and moves her from place to place.  I tell her that when she is up in the air like that she looks like Peter Pan.  She usually HATES the Hoyer.  But this time she kept saying "Whee, whee." and ...

  (Tricia) Linda’s oxygen levels had been remaining fairly stable, but they crashed again today—the fluid around her lungs returned. She is now on a BiPap machine to help her breathe. Tomorrow, I’m hoping they can insert a drain to keep the fluid from coming back. We also have had them stop all antibiotics.   We are having the draining procedure done so that we can get her comfortable enough to get her to Ed’s and my house. We will start working with hospice tomorrow to get everything in place—hospital bed, lift, recliner, etc. Once the fluid is drained and she is off the BiPap and stepped down to a regular oxygen mask, we’ll bring her home with us. We have tried everything to avoid the need for hospice, but we just couldn’t get there. Poor Linda has just been through so much, with rehab and surgeries, I just want her to be at our home and comfortable for as long as possible. My fear is that we should have done this sooner, but we kept thinking that access to daily therapy and...

(Marilyn) I went to visit Linda yesterday morning.  She was refusing all medications.  Getting Tricia on speakerphone helped briefly but then Linda went on a tirade.  She accused the nurse of being the cause of all of her issues and demanded a new nurse.  I felt sorry for this poor girl, but she complied and brought in a different "team" and spent time getting them up to speed. Linda told the people in the room that she was tired of all of this and she was done with medications, etc.  At this statement, the nurse turned to me and said, "This comment needs to be passed on to the person with power of attorney (Tricia)."  Tricia will also probably soon be talking to the palliative care team. Part of Linda's frustration is the fact that she hasn't had food or drink in three days (because she choked and then failed the swallow test several days in a row.)  But whatever the reason, Linda got more and more vocal and told me to get out of her room.  Which...

(Tricia) I did not go to the hospital today, hoping to take a rest day. I also was able to attend a planned lunch with friends. Marilyn visited Linda this morning, and Ed visited this evening--both of their visits were very difficult. Linda stated firmly, to each of them, that she did not want further treatment. She is only taking her medications when we beg her, and she is refusing to wear her oxygen mask (without it, her oxygen levels drop dangerously low). This is truly devastating. If we thought these were truly Linda's wishes, it would be tragic, but we would understand. It would be an easier decision. However, she has made it clear that she doesn't believe us . She does not believe us when we tell her that stopping treatment will end her life. She has told me that she believes we are the ones making her sick, and if we would just stop, she will be healthy again. This also would be an easier decision if the treatments she is refusing were invasive or complex. We always kne...

(Tricia) As Linda was getting better back in December and January, we always knew that if she were to fall and break her hip, it would lead to so many setbacks. But even so, I did not realize just how many setbacks would arise, and just how one would lead to the next. Since Linda was admitted to St. Mary's Hospital on Wednesday, they were having an incredibly hard time bringing her oxygen levels up and her heart rate down. On Wednesday evening, things looked particularly hopeless when her O2 levels dropped into the 70s.  But then a respiratory therapist discovered that Linda's oxygen mask wasn't tight enough. Once that was fixed, Linda's levels went back up into the 90s again. That was an incredibly upsetting moment, with a half-dozen medical staff in the room and some serious conversations with the doctor on call, all caused primarily by a leaky oxygen mask. We then had some good news Thursday morning, when the nurse called to say that Linda was awake and would be able...

(Marilyn)   This morning Tricia was going to stay home because she had a sore throat. But she got a call from BJEC saying that Linda was being taken to St. Mary's Hospital because her oxygen levels were low and her heart rate was high (not to mention the 30 pounds of fluid buildup that has been a problem.) The doctor said that they may have to put her on a ventilator and he suggested the family should get to the hospital.   So Tricia did an at home COVID test and it was negative so she decided she had to get to the hospital.  She called me and I rushed to the hospital.  Ed left work and showed up, too. The hospital did a CT scan which showed a lot of water buildup behind her lungs.  Her heart rate would not stay level and her oxygen levels were still low. The doctors decided to admit Linda to the hospital to spend a few days trying to drain the liquid and then they could try to stabilize her.  So the next few days are going to be tense. (By the way, we deci...