One Journey After Diabetic Coma

(Marilyn) At 9am she had eaten her breakfast and was still in bed.  Didn’t want to get up.  When the speech therapist came in, Linda did not cooperate.  I had brought my Kindle so I just read a book for several hours and then I left. The only time she really talked was to say she “wanted her in-laws to visit her.”  I had to point out that she didn’t have any in-laws.  I think maybe she was referring to cousins.  And I told her that I did not want to come every day just to watch her sleep.  She needed to do her physical therapy. Tricia and I hope that when this latest round of antibiotics is finished, which is later this week, she will start getting back to the way she was a few weeks ago.  Fingers crossed. 

(Marilyn) I got there at 9:00 and Linda was dressed and in her wheelchair.  She was not in a good mood. I was told that at 2:00AM her sugar was 89 and in the morning before breakfast it was 45.  Not good.  She ate her breakfast and a bottle of Ensure and by noon the sugar went up to 200.  Yesterday she was able to lift both of her legs up on the bed with no problems at all.  I had her do it again today to show the physical therapist so they asked her to work on standing.  She refused.  She is infuriating.  So I called Tricia on FaceTime and Tricia tried to convince Linda to do her PT but she didn't get far. When lunch came, Linda dug in and said she wasn't going to eat.  We asked her why and she just said "because I don't want to."  The nurse explained that if Linda didn't want to be hospitalized she needs to build strength.  At that point Linda kind of threw herself across the bed, all wonky, and closed her eyes.  Like I said, she is infuriating.

 (Marilyn) First, you haven't heard much from Tricia lately because she is wearing many hats.  She has her job, she handles Linda's menu to try to control the up-and-down sugar levels, she visits Linda every night for four or five hours, she runs down to NHC whenever Linda refuses to do her physical therapy and Tricia tries to get Linda to cooperate and she is now trying to arrange off-site doctor appointments for Linda (which has become problematic because of the C Diff infection).  But I will try to cover all bases. I got there today at 8:30 and Linda was dressed and in her wheelchair but not very friendly.  She said, "Why are you back so soon?"  Then she kept repeating, "I think I'll go home now."  They came to get her for physical therapy and she refused.  So we got Tricia on FaceTime and Tricia tried to convince Linda to do her PT, but Linda lowered her head and refused.  Linda did a lot of mumbling and muttering, totally impossible to understand. W

(Tricia) I have taken a bit of time off from writing updates here, partially to take a breather and partially because Linda’s status has been so puzzling. At her best point, a couple of weeks ago, she seemed to be able to hold onto more information in her working memory—especially details such as her birthdate, where she was, and why she was there. She also had gotten strong enough to require minimal assistance to stand up and walk to the bathroom and back. Then, the GI issues hit hard and her tests came back positive for a C.diff infection, requiring the facility to prescribe a 14-day course of vancomycin. After that point, we saw her regress significantly both mentally and physically. She no longer had the strength to help lift herself up, and her thinking became “jumbled” (her word) once again. She also went back to refusing physical therapy again —although in this case, the effects of the infection gave her a better excuse. And while she had not misnamed Ed for more than week, du

(Marilyn)  Linda was in lots of pain in her back when I got there.  I wanted to get the nurse and she begged me not to.  But she kept moaning so I flagged Justin (a PT tech) down in the hallway and he was able to reposition her with pillows so she felt better for an hour or so.  Then, in addition to her back, she was complaining about hip pain so I rubbed on some BioFreeze which helped for a little bit.  The thing is, we don't know if the pain stems from a fall or something else.  But she slept for most of the time I was there. She tells me that the male employees are all asking her on dates and she told them all no.  She said the main one was Tony (there is no Tony). She couldn't do any physical therapy today. Her sugar was 196. We finally got someone to actually look at the test results from the stool sample and it definitely is positive for C. Diff.  But no one is making us wear a gown and none of the nurses are wearing gowns.  So it's confusing. And when I got home toda

 (Marilyn) Linda was pretty tired today and slept most of the time I was there.  The nurse came in to change the bed and I stayed in the room this time.  When Linda started that "Oh, oh, oh," I asked her what was wrong and she said the nurse was going to drop her.  I convinced her that she was not going to be dropped and she calmed down.   When lunch arrived she perked up and dug in.  They checked her sugar and it was 357.  Not good.

(Marilyn) When I got there today I could hear her crying as I was walking down the hall but it took a few minutes to get my gown and gloves on.  When I walked into the room, she said, "There you are, I didn't think you were coming and I was calling out for you." Her sugar levels were good today and we had a fairly calm day with no mention of Mother, thank goodness.   Around lunch time the nurses came in to change her gown, as well as change the bed linens.  I stepped out into the hall to give them privacy (I couldn't go far because of the gown thing).  I heard Linda's characteristic "Oh oh oh oh," whenever something happens that she doesn't like and then the nurses came out.  When I went back in, she was sobbing.  I asked her what was wrong and she said, "That nurse said she could do anything to me that she wanted and there was nothing I could do about it."  And she kept crying and saying things that made no sense.  The nurse was only in th

 (Marilyn) For the past week or so, Linda has been having unrelenting digestive problems (no need to go into detail for that...) and it has depressed the heck out of her.  Tricia and I have been a thorn in the side of the medical personnel at NHC.  It is very hard to get an audience with any of them, no answer to emails, etc.  We've been trying to get a resolution of the problems so that she can be relieved of some of the ugliness. Anyway a few days ago it all came to a head and the doctor finally took some samples for testing and last night we finally got some initial results -- she has a C diff infection so she is now on antibiotics.  Also, everyone who goes into her room needs to be "gowned up," gloves and all.  They are still running more tests, but we hope that C Diff is it.  We think it takes about 14 days to clear this infection so we are again going backwards. We have been trying for days to get them to put her on some probiotics and they have refused, saying it i

          (Marilyn) My new outfit for today -- details to follow soon.  

 (Marilyn) 9/14//21 - I had a dental appointment yesterday so Tricia went to NHC in the morning and I got there around 3:00.  Tricia can post her morning later. But for me, when I got there, Linda was basically catatonic.  She wouldn't talk or move.  I was there about 3 hours and Linda didn't move the whole time.  When dinner came (which looked awful) I had to kind of force-feed her because she has to have food because of her diabetes.  I left around 7:00. 9/15/21 - I got there around 9:00 and found Linda in her wheelchair and eating her breakfast. I thought, wow, this is great.  But it deteriorated quickly.  The nurse practitioner came in to tell me that Linda's sugar dropped to 48 last night.  Not good. That was probably a result of not eating any dinner to speak of last night.  The NP said that Linda must have consistent carb consumption every day.  (Tricia is learning how tricky that can be.). So they are going to continue to play around with medications and diet. Trici

 (Tricia) We knew it was going to happen—an NHC nurse called me at about 8:00 this morning to let me know that Linda had fallen again, trying to get out of bed on her own. She has cut her right knee, and they are ordering X-rays of her right shoulder and right knee to look for fractures. We hope, of course, that the X-rays come back clear, but she still could have sustained a muscle injury or bad bruise, which also will slow her recovery. She had just healed from the injury to her right shoulder from her previous fall, so this is particularly disheartening. Nursing homes are prohibited from restraining a patient (which makes perfect sense), or even putting a bed rail in place, so keeping patients from falling is a constant battle. Otherwise, this week had been quiet. Each night, Linda has been more and more tired, likely because she has been more active during the day. On most evenings, she has often been in bed already by the time Ed and I arrive around 6:00. Normally, she is still ta

(Marilyn) 9/9/21 - Her sugar went up to 439 and that got everyone's attention.  The doctor came by and then the nurse practitioner came by.  Changes will be made in medications.  Boy, this requires constant investigative work (which Tricia is handling splendidly and she'll post a blog with more details).  With investigative work we learned that the Activities Department goes around in the afternoon giving treats to the residents which probably explains the sugar spike.  Ugh.  Linda still swears she can walk but when she tries, she fails.  It's like a roller coaster. 9/10/21 -  The speech pathologist spent time with Linda and says Linda seems to be regressing. When I got there today, the receptionist said that Linda had wheeled up to her and asked how to get to the second floor (there is no second floor), so they escorted her back to her room. But the good thing about that is that it's the first time she has voluntarily ventured out of her room!! The lady across the hall

(Marilyn) First of all, HAPPY BIRTHDAY, TRICIA, even if it is a crappy birthday... I went to NHC early today, around 8:30.  When I walked in, she was sitting there in her wheelchair and she said, "Marilyn, wheel me to the door."  I asked her what door and she said bathroom.  I didn't understand that because she is definitely capable of wheeling the wheelchair.  Anyway, I asked her if she needed to use the bathroom and she said yes.  I told her I would call for the nurses because I'm not able to be of help when she falls.  Well, she lost it.  Yelled at me and told me again that I don't have authority to tell her what she can and can't do.  When the nurses showed up she told them to leave, too.  So I picked up my purse and said I was not going to sit there and fight and I left.  Not sure what the nurses did. I guess Tricia will see how Linda feels when she goes there tonight. I did a little shopping today and then I joined a group of hundreds and hundreds of peo

(Marilyn) 9/6/21 - When I arrived, Linda was actually wheeling herself down the corridor.  I smiled and said "good for you" and she said, "I was looking for you!"  We went to the room and immediately she started trying to get up from the wheelchair, I told her she needed a nurse, she said she didn't, etc etc.  I got the nurses to come in and Linda was very upset.  She said to the nurses, "I have not given Marilyn permission to tell me what to do so if she calls you, don't come."  They explained that she has fallen so many times that at this point she is simply not strong enough to get up by herself.  She went into "Linda-mode" ignoring me and them. She tried again to get up holding onto a grab bar and she started slipping/falling, so I yelled for the nurses and they came running.  She was very upset.  So when her lunch arrived, I left. 9/7/21 - I took a day off and didn't go to NHC.  It felt good.  I also had my monthly Parkinson'

(Tricia) I was able to take one evening off on Saturday to have dinner with friends—a much appreciated distraction from all that is going on! But I did visit Linda briefly early Saturday evening before Ed came to sit with her, and she was surprisingly clear. She asked about the financial aspects of her medical care and what might be coming next. Ed says that, after I left, they chatted more about finances, as well as all that had happened before she came to NHC. She is still cannot believe that she was in a coma or had to stay in the hospital for so long. Last night, Sunday, she was tired but was adamant that she wanted to get up on her own. Normally, Ed and I would explain that she needed to wait for the nurses to help, because we are so scared she will fall. But last night, when we told her that we were going to have to wait for the nurses, her demeanor was far more somber and defeated than usual. Her inability to get up and down on her own is draining her every day. So, we decided t

 (Marilyn) I had a busy day planned so I got to NHC early -- around 8:30am -- and when I walked into Linda's room, she said, "I'm so glad you're here."  But it went downhill from there pretty quickly.  She kept saying she could walk on her own so she kept trying to get up from the wheelchair without locking the wheels and I had to keep stopping her, which made her more and more upset with me. After a few hours of this "game" she went into Linda-mode where she scrunches up her face, and closes her eyes and pretends I'm not there.  She doesn't reply or acknowledge anything.  But magically when lunch arrived she becomes wide awake and talkative. Ha! It was a terrible day.  Yesterday was pretty much the same. I got home at noon and Tricia & Ed came over.  We spent some time ironing out some Linda stuff, and Ed put a cabinet together for me, and Tricia pulled some weeds in my back yard that were at least six feet tall (sad, isn't it?), and we

 (Marilyn) I got there today around 10:00 and found her heading to the bathroom unassisted, ignoring the big sign on the door telling her to push the call button.  I was able to flag Tyler down and he assisted her.  Then Paula came in and spent an hour trying to reinforce the idea that Linda needs to get help to walk, etc.  Then when Paula was done I chatted with Linda (she was partly lucid and partly not ... so weird) and I said she could fall again if she kept trying to do things herself and she said "I don't care." I asked her if she had any pain from yesterday's fall and she said, yes, her back hurt. Tricia will talk to her again about that tonight. She's had a little trouble using the silverware at the nursing home so Tricia brought in some silverware with fat handles.  When lunch came Linda used the fat-handled spoon and that was much easier for her to grip.  Interestingly, I offered to feed her and she said, "No, I need to learn to feed myself."  

 (Marilyn) I got there around 10:30 and was met by the nurse who informed me that Linda had fallen again trying to go to the bathroom unassisted.  Linda says she is not hurt anywhere but time will tell.  She was incoherent for most of my visit. So Paula spent a lot of time with Linda today trying to get Linda to always remember that she needs assistance to go to the bathroom, but that didn't go well.  So now there's a big sign on the bathroom door saying "Linda, when you have to go to the bathroom, press the call button and WAIT."  Hopefully that works.  The nurses will check on Linda as often as possible. Linda's lunch came as I was leaving and it was a sandwich.  Linda was unable to pick the sandwich up and that really frustrated her. Tricia is so fortunate to have Ed to lean on -- he's been a rock for her.  I miss Marshall SO much. I haven't been feeling so hot (back pain and tremors) and am making a few doctor appointments for myself.  I am hoping the

(Tricia) As Marilyn noted in the previous post, we really can never predict how well Linda will be when we arrive. Some days, she is clear and strong enough to stand up from her bed with minimal assistance. Other days, she is foggy and can’t get out of bed. At this moment, we don’t have a professional neurologist to help us understand these cycles, but it’s clear that her brain and body get tired easily. When she is well-rested and alert, she is clear and her memory is more stable. When she is tired, she makes far less sense and her memory slips. I did go to the facility Monday morning to watch Linda’s physical therapy, which was again with Nora, in case I needed to step in to encourage her to continue. But Monday was one of her good days. Linda was clear and joked with Nora as she worked on walking, standing up from the wheelchair, and transferring from wheelchair to bed and back again. She even did her weighted exercises with Nora without complaint. All I had to do was walk behind he

 (Marilyn) For the past three or four days, I've cut down my time at the nursing home, spending some time on my own errands and health, etc.  Tricia and Ed have remained tireless in their time with Linda. In the time I've spent with Linda these past few days she has alternated between lucid and not-so-lucid.  She refuses to do physical therapy, but Tricia has spent a lot of time in the physical therapy room with Linda and the therapist, being a cheerleader for Linda and having a lot of success.  But on the days when Linda isn't willing to do her exercises, it is a challenge. I was there today for a few hours and Linda was almost falling out of her wheelchair she was so tired.  I don't believe the physical therapy people even came and got her because they don't like to make a patient exercise when they are not alert. The lady across the hall never shuts up.  She screams and then she cries and then she sings at the top of her lungs.  It really shatters the nerves.  Sh