One Journey After Diabetic Coma

(Marilyn's Perspective) I won't go into detail about what yesterday was like for me, but it was just like Tricia's experience with Linda slumped over in the wheelchair and no one seeming to care and I had to go out in the hall four times to finally get someone to get her back into bed.  I left there yesterday in tears.  It is so frustrating to be helpless. So moving to today, I got there around 9:00 and she was in bed and awake.  But after a short while, she closed her eyes and slept.  And she is now getting in the habit of sleeping kind of criss-crossed in the bed with one leg hanging off and that makes me afraid that she might fall off the bed.  I guess I can't worry about everything. She tried to talk but I simply could not understand her.  The only thing she said that I understood was "I don't want to be here any more."  It's heartbreaking. Tomorrow when I see the speech therapist I plan to ask if there's anything we can do to help her with her

(Tricia's perspective) Last night, Linda was far more awake and alert than we've seen her in several days. Her speech is getting clearer, which is wonderful. But we can tell that she is still stymied, and incredibly frustrated, when she tries to form even the simplest A-to-B thoughts. The part of her brain that makes connections and solves problems seems most negatively affected. I had brought in some shampoo, a spray bottle filled with water, and several hand towels to try to wash her hair. As I spritzed her hair with cool water, she immediately perked up, and said, "That feels SO good." I think it was the first experience of anything close to really washing hair that she'd had since the beginning. (The nursing staff use what's called a "shampoo cap" to wash the hair of a patient who is confined to bed--basically a shower cap with moisture and shampoo in the lining. But because there's no rinsing afterward, it leaves a residue. When a nurse cam

I got to the Facility around 9:00 today and she was, was as usual, kind of out of it, eyes closed and not talking.   Nurses came in for the morning medications and I asked if she was getting antibiotics for the pneumonia and the nurse said, "Pneumonia??  She doesn't have pneumonia.  Her lungs are clear."  So I went to talk to the Head Nurse and she confirmed there was no pneumonia.  HALLELUJAH!  The X-ray showed something in the lungs that she said resembled bubbles.  Maybe that's what the nebulizer treatments are for, but I decided not to ask.  Just VERY happy there's no pneumonia.   Around 11:00 the speech pathologist came in and wanted to give Linda something she could chew, so she had a little piece of a KitKat bar that she gave to Linda and Linda didn't really want it.  So tomorrow they will try pureed food. When Paula left the room around noon, Linda said -- clearly -- I want water.  Paula had told us not to give Linda more than a tablespoon at a time, s

(Tricia's perspective) Besides seeing your loved one struggling, perhaps the most difficult thing about situations like this is being powerless to help when needed. We had one of those moments last night. When Ed and I arrived at around 6:30, we walked into the room to find Linda sitting up in her wheelchair. At first, this seemed like a good thing, until we realized that she was exhausted and needed desperately to lie down. After trying unsuccessfully to lean the wheelchair back to give her relief, I went to find a nurse for help. I was told that they were understaffed, with only two nurses on duty that night, and that they were working as quickly as they could to check every room and get everyone settled. We waited for another 40 minutes, while Linda continued to slump over. I held her up as best I could, and we also tried to give her pillows to lean on. During moments when she was able to sit upright on her own, I massaged her shoulders to offer some distraction. We talked with

(Marilyn's Perspective) I got there this morning around 8:30 and she was getting a nebulizer treatment. The girl administering it just said it was a breathing aid.  A little later, Paula (speech pathologist) came in to give Linda food by mouth again.  It was Cream of Wheat, and Linda wasn't crazy about it, but she ate enough to make Paula happy. I asked Paula about the x-ray that Linda had yesterday and Paula didn't know. Linda sat up for a while.  I tried to get her to play Tic Tac Toe with me but I think she just wasn't in the mood.  Around 10:30 or 11:00 she started saying bizarre things, like "Turn that stereo down, it's too loud, but make sure Steven Spielberg is being taken care of."  Or "Would you run out and get me a Coke?"  The interesting part of this is that she was speaking very clearly and usually she is hard to understand. Around noon no one had come to tell me about the chest x-ray so I went to the hall and flagged down a nurse and

(Marilyn's Perspective)  I got to NHC around 9:30 this morning and she had her eyes closed and wasn't responding to me yelling at her.  One of the things we're supposed to be doing is cleaning out her mouth several times a day with these sponge-on-a-stick things dipped in mouthwash.  They clean the mouth and they also provide moisture. So she opened her eyes and cooperated.  And she kept asking for more.  So I kept refreshing the sponge for her. But at some point I tried to joke with her and she started laughing and I guess some of the moisture went down wrong and she had a coughing fit.  Scared me.  I summoned the nurse and she said she would keep an eye on Linda but she thought all was well.   The speech pathologist came by with a container of yogurt and sat Linda up in bed and showed her how to use a spoon (yes, Linda had trouble with that).  It took about an hour but Linda did finally manage to hold onto the container and feed herself. Then she was given some water, a t

(Tricia's perspective) Marilyn spent several hours with Linda this morning, and while she was there, Linda mostly slept, sometimes speaking unintelligibly. Ed and I spent the evening with her, and she was similarly quiet. As encouraging as yesterday was, in terms of her liveliness and ability to speak, today was equally discouraging. This evening, during hours when she's usually at her most active, she kept her eyes closed most of the time. At one point, we think she said that she could not open her eyes. At first, we thought it was simply because she was tired, so we sat with her and read, but eventually, she opened her eyes and looked very listless, staring at the ceiling and rarely making eye contact with us. When we asked her if she was OK, she seemed unsure how to answer. And when she tried to answer, we could not understand her. This after almost every word she said yesterday came out clearly.  When we see progress, it's so wonderful, but when that progress is followe

(Tricia's perspective) When I arrived, Marilyn was just leaving (we have been splitting our visits to spend more cumulative time with Linda). Marilyn had just had a nice chat with one of the residents over the fact that they were both wearing St. Louis Cardinals shirts. After Marilyn left, I walked back and saw the woman Marilyn had mentioned, sitting in a wheelchair, alongside two other residents as they watched the Cardinals game in a common area. I told her, "I know Marilyn was just talking to you about your shirt--I love it, too!" and she gave me a big smile and said, "Thank you! And they're up 9 to 3!" It seems like a nice little community at NHC. When we first knew that Linda would need treatment at a skilled nursing facility, we had been worried, given the negative connotations surrounding nursing homes. But, so far, the staff seems very nice, and the residents who can move about are provided plenty of activities and opportunities to interact. W

Marilyn's Perspective: I arrived at the Facility today around 11:30.  Her eyes were open and she was watching TV.  I asked her how she was doing and she said "fine."  But I couldn't get her to be any more talkative.  She closed her eyes and appeared to be sleeping but when I had a conversation with a nurse who came to the room and I told her that I felt Linda was playing games with us, Linda -- eyes still closed -- started laughing. It's really hard to figure her out so for now I am calling it progress.  But it is really hard to convince the medical staff that she may be improving if all they see is a woman who does not appear to wake up....  Tomorrow she will again be in the hands of the various therapists.  There were many activities at the facility today -- church services, Cardinals games, and other choices.  Too bad Linda isn't getting involved. Tricia arrived around 2:00 and I went home.

(Marilyn's perspective) I took a little time for myself this morning and got a pedicure.  Then I headed over to NHC (the name of the facility).  When I got there, I was walking down the hall towards Linda's room and I saw a wheelchair being pushed and coming in my direction and I thought boy, that looks like Linda.  And it was!!!  It's the first time she's been totally out of bed since this all started a month ago.  She looked great and she even talked to me. They took her to the therapy area and got her actually walking for three steps.  Then they took her back to her room.   By then, Tricia got there and had more personal things to put in the room so Linda could be surrounded with familiar things. Linda was getting tired and wasn't talking much at all.  But they kept her in the wheelchair for a while. We were there a few hours and got visited by the speech therapist, the occupational therapist and the physical therapist.We were warned that there woul

  (Marilyn's perspective) We have spent several weeks of fighting with the insurance company and rehab facilities about where Linda should go to continue her recovery after being discharged from the hospital. The doctors wanted to send Linda to a long-term acute care hospital (LTACH), but the insurance company would only pay for a short-term stay at a skilled nursing facility. At the same time, we were turned down by one skilled nursing facility after another. They all said that they did not have the staff available to meet Linda's many needs. We weren't certain what our next steps were going to be--likely an expedited appeal to the insurance company to pay for an LTACH.  However, we finally had some luck. One skilled nursing facility in St. Charles, Missouri--NHC Healthcare St. Charles--agreed to admit Linda. She was discharged from St. Luke's after nearly three weeks there, to the nursing facility yesterday afternoon. She spent the rest of the day resting while the

Photo caption: The view from Linda's window at St. Luke's Hospital. We got the stuffed camel at Christmastime in 2019, when Linda, Marilyn, and I went to Our Lady of Snows in Illinois to look at the Christmas lights. We gave Linda the camel as a comfort and a reminder. She ended up sleeping with it on many nights.   (Tricia's perspective) The last few days have been a whirlwind, and it's hard for my mind to latch on to everything that has happened. On Friday evening, Linda was with me, talking and joking, and we were preparing to wake up the next day and watch a movie and go over her medical needs. On Saturday, those possibilities had ended, at least for the time being. After Linda was transported to the hospital, Marilyn packed up quickly and headed down to southern Missouri to be here as well. Ed came down to help a few days later. While Linda was in the ICU at Ozarks Medical Center on Saturday and Sunday, the doctors discovered she had a very bad urinary tract