One Journey After Diabetic Coma

 (Marilyn) I got there at my usual time -- 8:30AM.  On Saturday the regular physical therapy people are sometimes not there. When I walked in the room, a therapist named Crystal was there and was getting Linda ready to head out for her session.  Crystal stepped out of the room to get a walker and Linda told me she really liked Crystal.  Crystal was able to get Linda to stand up with almost no help.  Then they walked down the hall and then walked back.  She had Linda sit down on the wheelchair for a brief rest and then get herself standing again.  They walked down the hall and back again.  Then Crystal had Linda practice going from a sitting to standing position several times.   The lady across the hall was in her screaming mood again and she came to the door of Linda's room and Linda told Crystal she wouldn't do any more therapy with "that woman" staring at her and screaming.  So Crystal closed the door. Crystal then left and said Linda ...

(Tricia) On Thursday, NHC’s case worker called me to give me the weekly update on Linda’s progress. This time, it was not all good news. Although Linda was still walking well, the case worker told me, she was most often refusing to work with the physical therapists beyond that. On many days, her only physical therapy was walking back to her room from the therapy room, using a walker for support, because she refused to do anything else. Because of that, the case worker said, the facility would likely not be able to report “progress” to Anthem, and any coverage would likely stop. But at the end of the call, she said, “but we won't be filing the report until Monday, so anything might happen between now and then.” Over the last few weeks, we have certainly gotten an education regarding how Medicare works for patients with conditions such as Linda’s. Medicare will cover days 1 to 20 at a skilled nursing facility at 100 percent, as long as the patient shows continued progress toward reco...

(Marilyn) All of the possibilities have started to come at me from all sides and it's tough to post these updates. For the past two days, Linda has been all over the map.  You know, when I took care of my husband for 3-1/2 years, I thought that was awful, but this is far worse.  Marshall was always lucid and we could discuss the situation and things that we needed to do, doctor appointments, medications, etc.  But with Linda it's not really possible to talk to her about the future. Every hour the conversation is repeated. She fell again today and it was her fault because she refuses to listen to the nurses (or me).  If she's in the wheelchair she wants to be in the bed.  If she's in the bed she wants to be in the wheelchair. There are two women that resemble Linda's best friend Sue and whenever one of those women walks past the room, Linda says "I'm really glad Sue is here, it makes me feel good."  And she thinks Mother is cooking all the meals especia...

(Tricia) Over the last few days, Linda’s memory seems to have gotten worse, rather than better, especially in the morning. However, she was fairly lucid last night. Although she still insisted she could walk (and was upset when she discovered she could not), she knew what the year was, who the president was, and where she was. She remembered aspects of the day, and she did not ask where Mother was, which was a relief.  But the saddest moment came after the nurses came in to help her use the rest room and prepare for bed. Ed and I left the room to give her privacy, but when we returned, Linda was incredibly upset, saying that she didn’t feel that they treated her like she was a person. My guess is that the nurses were simply being efficient and perfunctory, because they have so many patients to care for and need to work through the rooms quickly. But that doesn’t change the fact that this is an awful situation. Because Linda was more in tune with the present last night, we think her...

  (Tricia) To clarify the last line in Marilyn’s last post, I try to be a bit softer than that might make it seem! When I talk to Linda about why she believes she cannot make it through this, I tell her she doesn’t need to give up so easily because she is stronger than she realizes . I tell her that I realize this is incredibly hard for her—the hardest thing she’s ever done in her life—but that she can make it through this if she works with the therapists and doesn't give up. Tonight when we arrived, she was in tears. As she had with Marilyn earlier today, she asked why no one there would let her leave and said that she just wanted to go home. It was so wrenching, because I know that if I were her, I would want nothing more than to be home as well. I can only imagine how difficult it is for her to not be able to get up and leave of her own accord, and then have her family tell her they cannot take her home.  At one point, she was convinced that she could make it across the roo...

 (Marilyn) Arrived 9:00.  She was eating breakfast and actually did a good job.  Then she started asking to go home and I told her, as usual, she couldn't go anywhere until she could walk and talk and in order to walk and talk she needed to cooperate with physical therapy.  She said she will not cooperate because she shouldn't have to exercise if she didn't want to.  And as usual she said she was perfectly able to walk.  I said "show me" and she wasn't able to. Her lunch came around noon and she started to eat and then cried out in pain and said her right arm really hurt.  That arm seems to hurt periodically ever since she fell.   X-rays hadn't shown any problems but tomorrow we will talk to the Nurse Practitioner to see what we should do next. At any rate she said she couldn't eat because she couldn't lift her right arm.  I asked if she would eat if I fed her and she said yes.  So I fed her and she ate it all.  Is it possible I was...

 (Marilyn) Today covered almost every emotion in the book.  (When you read this, keep in mind that Linda rarely can attribute the correct name to the correct person.) I got there around 9:00, as usual.  She was eating a bit of breakfast, but not enough.  I brought with me my wedding pictures (I thought she would enjoy seeing them) and also a quilt that was given to Marshall when he got diagnosed with cancer.  Some neighbors made it for him.   She loved looking at the wedding pictures but had a hard time identifying who was who.  But there were a bunch of pictures of Mother and she lingered over those and loved seeing them.  So I left them in her room. When I gave her the quilt I told her that Marshall got the quilt when he was dying of cancer. And she said, "Marshall is dead??"  I said yes. She said he couldn't be dead because he was just there and then she had a complete meltdown, crying and saying she needed to talk to Tricia.  So I pu...

(Marilyn) Tricia's entry probably says it all.  But I can add a little.  Today, Physical Therapy came and got her to get her to practice walking.  They brought her back in about an hour and I asked how she did and Donna said she refused to cooperate.  So I asked Linda why she is refusing to do the main thing that will help her get out of there and she said she hates the PT people and will not work with them.  SO FRUSTRATING!! Then the speech pathologist worked with her for more than an hour and one of the exercises was showing Linda an item and asking her what it was.  One item was car keys.  Linda said it was socks.  Paula said, no, try again.  Linda said SOCKS!  Then Linda started crying and said, "I didn't even know my mother died."  This is all so emotional. I told Linda that by refusing to do physical therapy she was cutting off her nose to spite her face.  She said she didn't care (although we all know she does care)....

(Tricia) I've been to see her the past three nights, and each night is a different experience. Tuesday night, she was convinced the year was 1965, and she asked whether Mother knew where she was. Ed and I both tried to remind her as gently as possible that the year was 2021, and Mother had passed away in 2002. At first, she did not believe it, but as the realization slowly dawned that what we were saying was true, the expression on her face showed that she was reliving that grief all over again. After she processed the information, eventually she said, “I can’t believe that she’s really gone.”  Later that evening, a technician came to her room to X-ray her shoulder, to see if she had done any damage to it from her fall a couple days before (luckily, it seems that she had only bruised it). Wednesday night was incredibly quiet. I got there just as she had refused her dinner. I took the tray back to her and asked why she was refusing to eat, and she responded that it was because “she ...

 Got there at 9:00.  I brought some food so that when she refused to eat her breakfast I could try to tempt her with a few other things.  Didn't work, she wouldn't eat any of it. She has now lost 5 pounds and that's not good. She was very restless today and talked a lot but almost all of it didn't make sense.  She said she had her Pontiac out front and she was going to go home.  I reminded her that she hasn't had that Pontiac for about 50 years and she said oh no, you're wrong, it's out front.   She still swears that her friend Sue quit working at the bank and came to work at the nursing facility and she doesn't understand why Sue never comes to her room.   She says that at night, the nurses and assistants try to kill her.  But Virgil is taking good care of her (LOL). She says that no one ever comes to see her and I said, "Well, I'm sitting right here!  Don't I count?"  The speech pathologist was there and she made a log-in sheet so tha...

(Marilyn)  Monday, August 16:  I didn't go see Linda on Monday because I had an appointment with my own neurologist for my Parkinson's.  The stress of these past weeks has made some of my Parkinson's symptoms escalate.  The doctor talked me through a few things and invited me to come back if I need to. Tuesday, August 17:  I had an appointment for some workers to come to the house so my visit with Linda was short.  She had a dandy bruise on her right temple and said her right arm really hurt from her fall (which she doesn't remember).  She refused to eat breakfast and said she won't eat lunch.  They were going to arrange for x-rays of her arm.  (Tricia says they came and took X-rays while she was there.) Wednesday, August 18:  Today I had a chiropractor appointment so I did not go to see Linda. Here's an interesting tidbit:  A week or two ago, Linda told Tricia and me that someone named Virgil had molested her in the bathroom. ...

(Tricia) After Linda first experienced the drop in sugar levels and went into hypoglycemic coma in June, our immediate concern was whether or not she would awaken. Once she awakened, our next concern was whether or not she would be able to communicate with us. Once she began communicating, our concern was when she could eat on her own again and when she would relearn to walk. But during this entire experience, I imagined that her recovery, to the extent that she recovered, would follow a trajectory of slow but forward progress. I imagined that it would be like a structure that had been destroyed being rebuilt one small part at a time. But the reality has been far different. Instead, of a structure being gradually rebuilt, it’s like watching part of the structure be rebuilt one day, only to crumble the next. Or seeing lights that go on one day but that go completely dark the next. The last couple of days have made it all too clear that recovery from any kind of brain injury is not like ...

My interactions with Linda these past few days have been kind of same as usual. She was hard to understand and was asking for Tricia.  She clearly associates me with bad stuff and Tricia with good stuff. I don't know why that is but to me, Linda is associating me with our childhood where I was the big sister who sometimes made her life miserable.  But who knows? Tricia will make an entry here at some point but I will say this: she has been making amazing progress with Linda.  Sometimes I think she should go into the therapy field.  Anyway, she says that last night Linda was completely and totally lucid.  She remembered the circumstances that brought her there, she remembered what year it was, etc. etc.  And she was perfectly understandable.  She had a little trouble with remembering who the President was, but that probably applies to a lot of people in today's political climate.  LOL.

(Tricia) Friday, August 13: Yesterday afternoon around 3:00 I was in my office working when my cell phone rang, and I saw it was NHC's number. I answered, fully expecting it to be the case manager or nurse practitioner. I was shocked when I heard Linda's voice say, "Tricia, it's Linda."  She was calling me, she said, to ask me to come over to see her as soon as I could. I tried to explain that I was sick, and she responded that that was OK, she still wanted me to come see her. She then said, "See you in a few minutes," and hung up. At the time, I had no idea how she had managed to call me, and when I called right back to ask, neither did the nurse on duty. I had not planned to visit Linda until the weekend because I was still feeling some residual effects of my illness. But given the phone call, and given that I no longer had a fever and my cough had largely subsided, I went to see her and double-masked before I went inside. When I got there at 4:15, she...

(Marilyn) It was a very emotional day for me.  Linda begged to go home.  I had brought my iPad and Face-Timed with Tricia and we played some Trivia games.When we ended the Face-Time call, Linda started in on me again, saying that I am purposely keeping her a prisoner and not letting her go home.  This is getting to be more than I can handle emotionally.  I think I am going to take a few days off and re-charge myself.  When my husband had cancer I was at his side 24/7 and never took any time for myself.  I truly believe that is the reason my health has deteriorated (atrial fibrillation, Parkinsons, pacemaker).  It's like they say on airplanes -- take care of yourself so that you are better able to take care of your loved one.  It is incredibly difficult to take time to, for instance, spend a day at a spa, when all you can think about is your loved one suffering.  But at my age I am in the twilight years of my life and I worry -- well, you get ...

(Marilyn) Got there at 9:00 and the first hour and a half dealt with her desire to go home and how she blamed me for not letting her go home.  I know it's not her fault and I try to ignore it and be there for her.  But it really was tough to bite my tongue.  She wanted to brush her teeth so I helped her with that.  But then she started in on me again.  She said she would track me down, no matter where I went, and make my life miserable.   She wanted a Coke and they brought it to her.  She wanted a depressed bed.  We finally figured out she meant she wanted it laid back more. But with the pneumonia, they said she couldn't lay the bed back while she was still drinking her Coke because it would be bad if anything went to the lungs. When the nurse left the room Linda told me to depress her bed and when I wouldn't do it, she got very angry at me. She wouldn't eat her breakfast and they explained to her that if she didn't regularly eat food she would ha...

I got there at 9:00-ish and Linda's nurse stopped me to tell me that because of Linda's coughing and hoarse voice, they took a chest x-ray and she has pneumonia.  So she is on 10 days of antibiotics.  We haven't heard much from Medicare but we think that tomorrow is the end of Medicare coverage.  Ugh. Linda was dressed and in her wheelchair.  They told me she already had her breakfast but she told me that no one had brought her any food. That was the beginning of three hours of what I will call gibberish and bizarre behavior.  She kept wanting to pull her top up -- and those of us who know Linda know that in her right mind she would NEVER-EVER do that.   Here are some quotes for the day: "Father Daragassi says I can use his bathroom."  "Bobby's Fallopian tubes are linked to neutrocins." "They have the prettiest coffins in the area."  There are plenty more but these are the highlights. She decided she was tired of the feeding tube so she yan...

 I got there early today but they were dressing her and making up her bed so I couldn't go in the room until about 9:15.  When I walked in, she said, "I'm ready."  I said, "Ready for what?"  She said, "Church.  Which church are we going to?"  I reminded her that we hadn't gone to church for quite a few years.  She said, "What about Sunday school?" The speech pathologist came in and spent an hour playing a kind of Trivial Pursuit.  Paula would tell Linda a few words from a song and Linda needed to fill in the blank.  For instance, "Sweet Blank Brown."  And Linda said, "Georgia."  Linda enjoyed the game and got a lot of answers correct.  So we're going to play that game more often. Then she picked up her cup of water and dropped it -- almost like it was intentional.  I picked it up and gave it to her and she dropped it again, with a smile on her face. We took a few turns around the facility and by then she was ge...

 (Marilyn) As usual, I got there around 9:00.  Linda was awake and watching old movies.  She still has an intermittent couch.  And when she talked, she was very hoarse.  I alerted the nurses and the Head Nurse and they said they would keep watch.  I heard other coughing in the corridor so I assume there are a few colds going around.  Let's hope that's all it is.  Tricia is still under the weather so probably won't be visiting tonight either. The lady across the hall evidently has a broken leg and today she was banging her wheelchair, with the extended leg, into the walls and wanting to know how to get to the airport.  Kind of sad. Linda kept calling me Tricia and at the end of our visit, she apologized for identifying us incorrectly. The speech pathologist spent an hour with Linda.  First, she had a chocolate chip cookie and she broke it into pieces and asked Linda to pick up a piece and bring it to her mouth and eat it.  She was ab...

(Marilyn) I got there around 9:00 as usual.  The lady in the room across the hall was full throttle today.  In a wheelchair going up and down the hall running into walls and also aiming for -- and hitting -- nurses. Yikes. Tricia bought Linda some new clothes and Linda and I spent a bit of time looking at the clothes and getting them put away Then Linda told me that Satan was in the room and I should be careful. Linda said she wasn't in any pain today but then a bit later she was moaning and she said her right side hurts and that it also hurts "down there."  Way back when she went into St. Luke's she had the same pain and it was a UTI.  So I talked to the nurse about it and she will talk to the doctor.  I also left a note on the Nurse Practitioner's desk. Linda was also coughing this morning.  The nurse said she hadn't heard Linda coughing but she would listen for it.  She said Linda's temperature is normal. Linda asked me to please move the apple. ...

(Tricia) I felt worse today than I did yesterday, so I was still unable to go visit Linda in person this evening. I didn’t even feel up to spending more than a few minutes with her on FaceTime. But she was sleeping for most of Ed‘s visit, so our five-minute call during the time she was awake was just enough. When I told her I was still sick, she first asked “So, what does that have to do with me?” (Thanks, Linda...ha). Ed told her that I just wanted to let her know that I couldn’t be there because I was still sick with the flu. She then peeked at me over her covers and said, “Then you should go to bed!” She gives good advice. :-) I quickly asked her if she was tired because she had had a hard day, and she said she had—as Marilyn noted in the previous post, the nurses wanted her to sit up in her wheelchair longer today to avoid a pressure sore. If that was the case, that might have sapped her energy for the day. After a few minutes chatting, her eyes were already closing, so we ended th...

(Marilyn)  I arrived around 9:00 and she was dressed and in her wheelchair.  She immediately wanted me to get her out of the wheelchair and in her bed.  I asked the nurse and she said that Linda had just been put in the chair.  She said that Linda has a bed sore and needed to spend less time in bed and more time in the chair because they don't want the sore to get infected.  Linda wanted no part of that.  She was begging me to get her into the bed.  I was told that she was scheduled for physical therapy so I shouldn't let her get into bed. She said, over and over, "That's not doable."  She was holding her head and saying she was in lots of pain.  I asked her where the pain was and she pointed to her right side, from waist to knee (maybe sciatica?).  She started moaning in pain.  I got the nurse and the nurse said that since Linda is allergic to all pain medications, there really wasn't anything they could do.  Linda kept saying...

(Tricia) Oh, the days when a fever and cough were just a fever and cough, and not the cause of two days of angst! Although it was unlikely that I would test positive for COVID, I still didn't breathe easily until I got the results of my test this morning—and it was negative, thank goodness!  Normally, finding out one has the flu isn't that much cause for celebration, but we're not exactly living in normal times. Because I'm still not 100% symptom-free, Ed went to see Linda tonight alone, and patched me in on Facetime. He had told Linda I wasn't there because I was sick, and when I told Linda I was sorry I couldn't be there in person, she said that was OK, because I needed to get better. She thanked me for sending Ed! I walked around our house with my phone to show Linda our three cats—Davy, Bling, and Hopscotch—and to see if she remembered Bling and Hopper from her past visits. While I'm not sure she did, she seemed to commiserate with Davy when I admitted I...

(Marilyn)  I got there this morning at 9:00.  When I walked in her room she was dressed and in her wheelchair.  She said "You're late."  I said "late for what?"  She said, "Five more minutes and I would have been gone." She then started trying to get up and out of the wheelchair and she was still attached to her feeding tube.  I grabbed the wheelchair handles and stopped her and said she was hooked up and she said she wasn't.  I said, "Yes you are."  She said, "No I'm not."  And when I tried to show her the tubing she slapped my hand. She pulled it out anyway and it started dripping on her. I had to call for a nurse and they unhooked her. She tried to stand and couldn't, but after a few tries,, she was able to stand up for a moment.  And then back into the wheelchair. She headed for the door and I asked where she was going and she said home.  I said, "Okay, bye."  And she stopped and said "Maybe later....

(Tricia)   8-5-2021 - Sadly, I have been unable to visit Linda for the last two days, because I have come down with what I hope is the flu. Fever, coughing, sore throat--all symptoms a person absolutely does not want to have during a pandemic! Even though I've been vaccinated and my exposure to the public has been limited, I can take no chances. I went out yesterday and picked up a COVID test and sent it off to the lab. I cannot resume visits with Linda until I am symptom-free and receive negative results. Marilyn has graciously been going to visit Linda both mornings and evenings while I'm sick, but I'm eager to recover so that she is not taking on so much all by herself. In any other situation, Ed would go in the evenings without me, but we don't want to risk anything in case he has picked this bug up from me. Meanwhile, today is Thursday, the day each week that Linda's medical and therapy team meet to report on her progress; afterward, NHC's social worker gi...

(Marilyn - AM) I got there around 9:00 and when I walked in the room, she said, "Oh, I'm SO glad to see you."  And I said, "I'm glad to see you, too."  Then she said did I bring her car keys.  She said her car was right outside and she was ready to go.  I explained she couldn't go until she was able to walk, talk, eat and go to the bathroom by herself.  She said she could walk so I asked her to bring her legs off the bed and onto the floor and she was unable to lift them. When I came into her room, I had a cup of coffee in my hand and she reached out and grabbed it.  I said, "Hey, that's coffee and you don't like coffee."  She said, "Yes, I do."  She took one sip and handed the cup back to me! The lady across the hall died last night and the family was cleaning out the room today and Linda wanted to know why all those people were in the refrigerator. It has been suggested that when Linda says things that are kind of off the wa...

(Marilyn - AM) I didn't go yesterday because I joined a Parkinson's support group and my first meeting was yesterday.  Then I had a chiropractor appointment because my back is killing me.  But Tricia was there yesterday and it was a phenomenal day, full of hope. I arrived today around 10:00 expecting to be thrilled with Linda's progress, and when I went in Linda's room she was dressed and in her wheelchair.  When she saw me, she said, "Oh good, you're here.  Did you bring a car?"  I asked her why and she said, "You're going to get me out of here and we need a car."  I explained that we weren't going anywhere and she didn't like that answer.   Nothing she said today was understandable and by noon she was slumped over in the wheelchair and not talking. They have removed her catheter and the feeding tube is being attached and unattached to kind of wean her from it and get her eating food more and more.  She says she has to go to the bath...

(Tricia) After we left Linda last night, I thought this was going to be a very different blog post. Last night, we talked to her for a couple of hours, and in that time, sometimes she could speak clearly and sometimes her speech was muddled. (At one point, she apologized for "not bringing me the video of the 'slime dance' as she had promised"...if only there were a way to know what she really meant to say!)  On a sadder note, she said several times that she wanted to go home, and that she didn't understand why she had to stay here. I explained that she needed to be here so that she can get stronger, and that if she worked with the physical therapists every day, they would help her get home. But that seemed only to depress her further.  To try to distract her, I did a couple activities with her, including one in which I placed a group of angels in front of her--these are angels she had crocheted herself and given me as gifts over the years. I asked her to reach out...

 (Marilyn) Got there this morning around 9:00.  Linda was sleeping and would not wake up for me, so I just stayed and read a book. The lady across the hall was still screaming "Mama" over and over again.   The speech pathologist (Paula) came in with breakfast.  She is trying to get Linda to eat real food and digest it, etc., so that they can remove the feeding tube. That means that over the course of four or five days she needs to be sitting up to eat and then stay sitting up to let it digest.  She needs to table to use a spoon and fork and bring food to her mouth in very small amounts at a time.  Linda ate a little bit today but couldn't use her arm the way she should. And she wouldn't stay sitting up after she finished.  The speech pathologist thinks that Linda is not progressing the way they would hope.  Tricia will be there tomorrow because it seems that Linda is responding to Tricia and not me. Later in the morning a nurse came to the door to...

  (Tricia) Last night, I spent about four hours with Linda, and when I left, I felt both sad and hopeful, if that's possible. As Marilyn noted, Linda still seemed depressed, which I don't think is surprising. I told her that she would have to work with the physical therapists to get her strength up so she could get herself out of bed, move herself to a chair, and even walk a few steps again. Then, she could leave the nursing facility and at least come home with one of us. Her expression became very wistful, and I asked her what she was thinking. Her response: "Bad thoughts." When I pressed further, she said she wasn't sure if any of that was going to happen. I tried to lighten the mood, by noting I knew how much Linda hated exercise (she chuckled and nodded in agreement), but then I noted that she was going to have overcome that if she was going to walk again. At this point, I told her to think of our mother, Margaret. Margaret, who passed away at age 83 in 2002, ...

I got there around 9:00.  She kept her eyes closed most of the morning.  And she was in a very depressed mood. The patient across the hall was in a screaming mood and it was soooo sad.  She kept screaming "Mama, Mama!"  This went on for hours and finally Linda said to me, "Why did you bring me to this house of horror?"  Then she said, "You have no idea what I went through this morning." I asked her what happened and she said she didn't know. She's been having trouble remembering people so Tricia brought a bunch of photos.  This morning I tried showing her a few and asking who they were.  She didn't do too good, but when I pointed to a picture of our brother Bob (who died not too long ago) and asked who that was, she said, "He was the first to go." It was kind of an uneventful morning.