Previously, on "The Death of Gloria" ...
I suppose the first indication, if we only knew then what we know now, was a concern, on the part of the oncologist, that led him to call for an abdominal CT scan in September. A consult with a GI specialist was unclear, and nothing was done.
At the beginning of November, Gloria began having more stomach and gut pain and nausea. We just thought it was a flare up of IBS, as has happened in the past. However, in mid-November it got worse, and Gloria could only tolerate meals of two or three ounces of food. By the last week in November, Gloria could take no solid food at all, and was existing on about two ounces of chicken broth, two ounces of Boost, and eight ounces of soda water per day. On November 28th, Linda came over and made Gloria promise to call the doctor the next day. When I reminded her of this on Monday, she said, "Is that before or after I punch you in the nose?" But she did call, and made an appointment for the next day.
Our story continues ...
Tuesday (November 30):
Gloria has not been feeling well for the past month. It's been getting worse, and she hasn't been eating well. She was getting weaker, and so, yesterday, she phoned the doctor. As luck would have it, there was a space to see one of the doctors in the clinic (not ours), today. He didn't know what might be the problem, but, when he tested her oxygenation level it was very low, and they called an ambulance.
Emergency was very busy, and I thought it would take forever to get seen. However, being a) sent from a clinic, b) in an ambulance, and c) having low oxygenation seemed to bump Gloria up the queue.
They did various things including a chest x-ray, which indicated pneumonia. (No, not CoVID pneumonia.) Still don't have any final word, but they are putting her on antibiotics, IV for dehydration, and seem to think it should work out well.
Wednesday:
OK, for those who are big into tl:dr (or "burying the lead" in older jargon), Gloria is in ICU and on a ventilator. No, it's not CoVID. She does have pneumonia and a pleural effusion, but that doesn't explain everything that has happened, so they are still running tests. Lots of them.
For December 1st:
I got to LGH about 9am. Gloria was in a great deal of pain when I came in. There was an IV bag empty, so she had had something, but nothing was running when I came in. It took a while to find "her" nurse, and nobody else had "orders" for diet, water, pain medications, or anything. Gloria had had a rough night, but I managed to settle her somewhat after I got there. A couple of nurses came and repositioned, and cleaned her up a bit. They gave her extra strength Tylenol about 9:40, but seemingly no real orders even then.
Nobody seemed to have the patience (or just time?) to wait for Gloria to answer for herself, which she could do if they let her (at that point). The doctor came back and had me go through the history. She ordered pain medications, said that water is OK, and regular medications were started. Nine pills, right off the top. Gloria now had a face mask instead of a nasal cannula, which meant that taking pills was a bit of a production. (Pill, sip of water, mask back on before the O2 sats fall too low. Pill, sip of water, etc.) The doctor also ordered another bag of fluid, possibly 2 antibiotics, and a chest and abdomen cat scan. One of the pills was hydromorphone/dilaudid for pain, and, once it kicked in, Gloria was mostly dozing or zoned out, probably dead tired from the bad night (and many other things, possibly ...)
At noon they took Gloria for the cat scan. She was dozing when they took her, and dozing when she got back. I figured some rest was a good thing, so I went to find some lunch.
(Somebody left a lunch tray while I was gone. Seems a bit late since I left a little after 1, and I know the doctor said no solid food ...)
(The guy moved into the room next to Gloria about 2-ish was attended by two security guards and a cop. He was also making weird noises, and seemed to be trying to imitate the Indianapolis 500 all by himself. You meet the most interesting people in the emergency department. Tuesday night there was a lady in the waiting area who seemed to be crowing like a rooster.)
At 5 PM Gloria was transferred to the Cardiac Care ward. It was then that they found out they couldn't rouse her. Four nurses from cardiac care, and one from ICU, sprang into action to figure out what was going on. Eventually they decided to transfer her to ICU. At that point I had been at the hospital for nine hours: eventually that became almost fifteen. Linda and Hannah showed up, and did get to see Gloria after several hours. She has lots of tubes, including the ventilator, but her oxygen, pulse, and blood pressure is better than it has been since she got to the hospital.
I had to wait a few hours for them to finish admitting Gloria to ICU, and then we were able to see her. We hoped we might get some information from the doctor, but EVERYONE in health care is very pressed these days. What I DO know is that a lot of skilled people are working flat out to help Gloria. I hope I can get some more time with the medical people tomorrow, but I doubt that answers will come any time soon.
Thursday:
Because LGH has free parking in their lot right now (and possibly because shoppers are taking advantage of that because of limited parking on Lonsdale) (and because people are using the LGH lot as a kind of park and ride to take the bus into Vancouver), there is hardly ever any parking space in the actual lot. I parked on the 13th street side and then, of course, had to hike to the 15th street entrance, because they have closed the 13th street side for better access control due to CoVID.
But when I called the desk, I got in right away.
Gloria is on "droplet" protocol. This is because of the fluid they are taking out of Gloria's chest space, and the possibility that it might be growing something nasty that they don't want anyone else to get. So you have to have a gown, gloves, and eye shield. (You already have a mask.) This isn't specifically because of CoVID, but it is the same type of protection, so that means that they are allowing Karen (just back from travelling) to visit.
I got a chance to talk to the doctor while I was there. They have taken a litre of fluid out of the pleural space, which is an awful lot for a space that isn't supposed to have anything in it. They are going to start feeding through a naso-gastric tube and reducing sedation to improve awareness. This is a gradual process, but, while I was there, I did see some reaction of her hand to touch, and some wincing that indicates a rising level of consciousness. They are also considering cancer (because of the symptoms overall, and a "thickening of the stomach lining", so at least someone is not completely fixated on pneumonia. I noted the oncologist that Gloria has been seeing to the doctor.
While I was there I was passing along news to Gloria. I was updating the girls via texts, so they were feeding me stuff to tell Gloria. Karen sent along a picture of Bennet, but, even though I told her she could see the picture if she opened her eyes, Gloria didn't. Bennet ate his first solid food today, so I told Gloria that she was in a race with Bennet for solid food.
We ended the visit with a quick test of a Whatsapp video call, so we know that'll work for other family members who can't get to the hospital, or are just limited by the visitor restrictions.
Friday:
Got to the hospital, and the ICU, and called in at 8:18 am. The nurse eventually came out (9:00am) and said that report was just going on, so it would be a while, but she didn't want me to think I'd been forgotten. (Which was nice of her.) Don't know if this means that the chances of getting in quickly vary, or if it means afternoon is better. (Later that afternoon I again got in fairly quickly.)
Unfortunately, checking on Gloria is not all I have to do. The renoviction is still proceeding, and doesn't make things any easier. I will have to change not merely my location, but my Internet provider as well, which is going to make wholesale changes to my email processes. I am still downsizing (and the girls have been great helping with it), and someone offered to come over and pick up a bunch of my old computer stuff, which is a big help, but, at the moment, also a drain on time.
The gastroenterologist (is she still a gastroenterologist if she's a surgeon?), came in while I was still there in the morning. We discussed Gloria's history, the IBS, and the recent nausea, etc. She doesn't like the colour of what is being suctioned from the stomach. Says it indicates minor bleeding. The "thickening" in the stomach lining apparently showed up on the scan in September, but is now bigger in extent. She was planning an endoscopy on Monday unless something happened over the weekend. She asked about any family history of stomach cancer: of course Larry died of bowel cancer, and Sulla had a whole bunch of stuff taken out because of cancer. (Not to mention Stu's polyps, although they were a bit different.)
And then, as I was leaving for another appointment, one of the nurses mentioned that the scope would be today, probably soon. So, after the meeting, I raced back to the hospital to try and get an update before I had to meet this guy about the computer stuff.
Gloria's nurse was away when I got there, so I had to wait until she got back to get details. Obviously there is bleeding because she is now on pantaloc for GI bleeding. (Seems to be a version of pantaprazole, which I take for stomach acid.)
Oh, Gloria is off droplet protocol, so no gowning.
Gloria apparently tolerated the procedure quite well, which is a relief, as she didn't tolerate a colonoscopy she had twenty years ago. The ulcer had grown quite a bit since September, and the surgeon said that it was unusually large. There were, in fact, two small bleeds which were cauterized. But apparently there was some limitation in the size of the opening in the stomach (they didn't say which, but I assume from the stomach to the intestine), which meant that there was a lot of food in the stomach even after extensive suctioning earlier. This is still very strange, but it would seem to explain the nausea and inability to eat. The surgeon will not be in over the weekend, so I probably won't have a chance to get real details until Monday, and then, I have an appointment at about the time I expect the surgeon will be doing rounds. Not an optimal situation.
The guy who was coming to pick up the computer stuff was late, so I did get home before he showed up. However, I had backup: the girls were at the townhouse packing and arranging all kinds of details that I haven't even been able to think about. Great women raise great women who raise great women!
Saturday:
I went to bed early, about 9 PM, because I am seriously in sleep deficit. Woke up at 2 AM. Tried to stay in bed, but, after an hour, it was obvious it wasn't going to work. Spent four hours on the backlogged email, didn't even get all the way through. Did a bunch of work on packing and getting things ready for people to take away (or throw in the garbage). It does seem that the afternoon is better in terms of actually getting in to the ICU (although it's murder trying to get a parking spot). So I was at LGH about 1 PM.
SHE OPENED HER EYES!!!!!!
OK, look, when you are in the ICU, you take your "wins" where you can get them.
I'm talking to her (when I'm not crying from relief). I showed her the picture and video of Bennet (thank you Hannah), and she seemed to respond to that. But it's difficult to know what she is actually responding to. Just your voice? Just any voice?
She is obviously in pain or discomfort/distress over something, so I got a nurse to give her something. She's got multiple tubes down her throat, so that can't be nice. There is no indication yet of taking her off the ventilation.
She reached up to me!!! ( I think she may actually be reaching to try and pull out the breathing tube.) I don't know how much is intentional.
Nothing much is happening while I'm there. I want to talk to the nurse and maybe the social worker, but you have to wait. So I'm waiting. Gloria dozes or opens her eyes. I talk to her if I'm not reporting to Karen and Linda. Or if I can think of anything to say. Like who I've reported to, or who has responded.
The nurses came and repositioned Gloria in the bed. That did seem to settle her, and she isn't wincing as much. But she won't turn her head on request or wiggle her fingers/toes, so she's not back to that intentional level. The repositioning also seemed to tire her, and she's dozing or sleeping now. Still waiting for the social worker or the doctor. However, I know that a lot of work is going on behind the scenes, and it's not like nothing is happening--it just isn't happening right where I can see it.
I do have some questions. Like when they might try to stop the ventilation. Do they have cytology on the pleural fluid? Ah, one more piece of information: there will be another endoscopy on Monday. Which may up my chance of actually seeing the GI doctor.
Hospitals, like doctors, run on their schedule, and you work around them. And then, if they change their schedule, you work around that :-)
Gloria had her eyes open for a minute, but then dozed off again. (Or she's mad at me and won't talk to me :-)
Sunday:
OK, I didn't think there was going to be much to report today. Devon came to the hospital, and they really only like to have one person from the family per day. I did get a chance to talk to Gloria's nurse for today, but, while she told me that Gloria was more responsive and would respond to commands/requests, she wasn't able to answer some other questions I had, and the doctor wasn't available before we left.
They are doing another endoscopy tomorrow, and the current plan is to try and take her off ventilation after the endoscopy tomorrow. That would allow them to reduce sedation even further, and they want to do it after the endoscopy so they don't have to sedate her again for the endoscopy.
Devon said that Gloria did open her eyes, but only briefly. That indicates, to me, that she isn't really conscious, since, if she was, she would have made more of an effort to stay awake with Devon there.
So there wasn't much to report from that. However, late this afternoon our family doctor called (which is an extra effort on her part, as she is currently off). She has received some reports, and is in a position to pass information from one doctor to another in case anything gets missed. In addition, she had some further information on the first endoscopy. The reason for the second endoscopy so soon seems to be that the amount of food in Gloria's stomach made it difficult (or impossible?) to see what they really wanted to on that first session. Also, in addition to the "thickening" of the stomach lining (which everyone seems to assume is an ulcer), there is a "mass." "Mass" is the word doctors tend to use when they don't want to say "tumor" or "possibly cancer." This isn't to say that it is cancer, but I assume that a biopsy would be taken as a matter of course in such a situation. (The "mass" also seems to be related to the restriction on the stomach opening that has been mentioned, and which I still want to know about.)
Tomorrow is going to be busy, but hopefully I can get some answers. Also, if I go late enough, Gloria may be less sedated. (But if I go too late, I would probably miss the chance to talk to the doctor. It's a bit of a balancing act ...)
Monday (AM):
How the [badwords] is it snowing, when I have to be running all over town, and racing back to the hospital, trying to be in time to see the doctor?!?!?
Can it get any worse?
(No, no, I know the answer to this one: Yes, it can always get worse ....)
Monday (PM):
When I finally got to the hospital, and was preparing to call in to the ICU, I found that I had missed a call from LGH. Nobody knew what the call was about, but I got in. The endoscopy had not been done yet, but was still booked. After the endoscopy they would try to remove the ventilation. So, basically, all was still the same there, just later than I thought.
Gloria is more awake and aware. When I told her about some things that had happened, her eyes widened. When I asked her questions, she would shake her head "no" or nod "yes" in appropriate places. She was in some discomfort so I asked if she wanted me to get the nurse to move her and she nodded her head "yes." (Unfortunately, we couldn't figure out what, specifically, she wanted.) She is raising her hands and making small gestures that seem to be intended to communicate, but we are mostly not interpreting properly. But she is obviously understanding me (whether or not she will remember that later), and widens her eyes when I say something that surprises her. When I talked about the restricted opening and food in her stomach, she widened her eyes and you could tell she understood that that explained the nausea.
The nurse gave Gloria something to make her sleepy because of the discomfort, so she was less awake then. They don't know, here, who phoned me, but thought it might be the GI surgeon. I decided to wait on the endoscopy and hoped to talk to the surgeon after.
I finally figured out what some of Gloria's gestures meant. She was bothered by the ties on her wrists to keep her from pulling the tubes out. I asked if she wanted me to ask the nurse if the ties could come off, and she nodded "yes." (Unfortunately they couldn't.)
In other news, the visiting policy has changed, and now there can be two people per day. Not together, it's one at a time, but two people per day. (And you can stay longer.)
I have been telling Gloria about her time in the hospital, and what happened day by day. Mostly going back through the WhatsApp notes to remember myself! Also showing her the Bennypics :-)
Since she got the extra medication her awareness level seems to be down. She still reacts when you speak to her, but not with the same shades of understanding that she showed before. However, she seems to have become even more disturbed by having her hands tied. Hopefully the surgeon will show up soon.
Just had a talk with a doctor (not the surgeon). No cytology has come back from the pleural fluid. No biopsy was taken from the first endoscopy because the surgeon was afraid that more disturbance would cause more bleeding. The "mass" may just refer to the ulcer, which is large. The limitation on the stomach opening (which is between the stomach and intestine) again may just be the ulcer. So everything waits on the scope. If it doesn't happen soon, trying to remove the ventilation may have to wait until tomorrow. Finally I had to leave, as I had been there much longer than allowed, and had other tasks to do.
I later called the ICU, and found that the endoscopy never did happen, so it will be delayed until at least tomorrow. However, while that delays Gloria getting off ventilation, for the moment it allows them to increase her sedation, and at least she was resting.
Tuesday:
Do you want the good news or the bad news?
Well tough. I can't type fast enough for these two way conversations social media whizzes have on WhatsApp, so it's my choice and you get the bad news first. The endoscopy still hasn't been done. And probably won't be done until Thursday. They might take out the breathing tube, but the respiratory therapist wants to think about that. If they can take the tube out, it will be a great relief to Gloria. She is really frustrated.
That's actually the good news, because Gloria is much more aware and awake. I was able to talk to her (well, I suppose at her) about various things, and got appropriate responses.
I'm getting better at interpreting this non-verbal communication thing. Gloria indicated she wanted something, and it seemed, to me, that she wanted something from the nurse. I asked Gloria if she wanted something from the nurse, and she nodded her head "yes." So the nurse came and started to go through the options, but I was the one who figured out that Gloria wanted to be repositioned on the bed. And just now I figured out that Gloria wanted me to sit on the other side of the bed so she could move her head to the right (which is another major step forward, because she's had her head turned to the left this whole, well, week),and she pointed roughly in my direction and I asked if that was a patented Sulla Furneaux "you got it" pointing finger, and she nodded her head "yes."
I'm passing along some of the responses, and some of the people who have expressed interest. She is remembering more than we thought. She said she does remember Devon being here on Sunday. (I think she was trying to tell me that she remembered me being here, but I wasn't sure about that one.)
(I have mentioned that the parking situation is a pain. Thing is, many people are racing around the lot, even though they already know there are no spaces. They'll go round and round in the vain hope that one of the cars in one of the spots will have suddenly disintegrated, without someone having to come and take it away. I generally wait in a given spot until I see someone come out to their car. Like today. I saw someone get in their car, got myself nearby, and was backing into the spot as two of the racers noticed the car pulling out and came roaring up just too late to get the spot :-)
There was one request she made repeatedly, raising both hands. I thought it was a complaint about the "handcuffs," soft restraints they use to ensure she doesn't (even accidentally) pull out the breathing tube. But it wasn't that, and I eventually figured out that she wanted her mouth moistened (which is a non-trivial task in this situation).
OK, good news and bad news again. The good is that they finally are planning to extubate shortly. Haven't done it yet, but I'll wait around until they do.
The bad news is the Big C. Martin told me to keep asking about cytology of the pleural, or other, fluids. It has finally come back. It indicates some form of cancer, an adenosarcoma. Some people felt that might be related to the stomach ulcer, but apparently the pathologist felt it was more related to the pelvic organs. At the moment, to the ICU staff, there are other things to deal with first, but it will have to be addressed once Gloria is out of here. I imagine there will be yet another appointment with the oncologist fairly soon after Gloria is out of the hospital.
At 4:30 the tube came out.
She is trying to expel stuff from her lungs that she hasn't been able to. She can talk, but needs suction regularly. She's very weak and it's hard for her to speak loudly enough to be heard. (And hospitals, contrary to the infamous sign, aren't quiet zones.)
She's having some difficulty breathing--probably fairly normal. Gloria got mad at me for trying to report everything to the girls right away. (The girls get mad at me if I don't report everything about their Mum to them right away. [Sigh.])
She seemed tired and dozing after the clearing attempts, so I left her to sleep.
(Note: While people assume no news is good news, for the next couple of days net access is going to be problematic, so if you don't receive a report assume that I couldn't find a connection ...)
Wednesday
Parking is absolutely insane at Lions Gate. It took an hour to get a parking space. If you are one of those people who are parking in the Lions Gate Hospital parking lot and then going shopping on Lonsdale, then you are a terrible person and I hope you die a lingering and painful death with no one to give you aid or comfort.
(Driving some distance today, I realized that this whole situation is affecting me. I found that I was MUCH less patient than normal with the normal round of driving idiocy. So the stress and lack of sleep and extra work and everything else is having an impact on my mental balance.)
Gloria was quiet, but wanted to be repositioned, so I helped the nurse do that. She's mostly lucid. Very weak and quiet voice, but she does know to make an effort to enunciate. She is going to be transferred to a ward. (The occupant of the bed is still there, so no specific time for the transfer yet.) I said I would go to the cafeteria for lunch, which would extend the time I could wait. Gloria said, "Burger," so she's still got her sense of humour. (The hospital cafeteria doesn't serve burgers, but Gloria thinks that I make unhealthy choices and always order a burger any time I do not eat at home, so it's a standing joke between us.)
She has a massive ulcer, and cancer on the outside of her lungs. Outside means less treatable. The severity of neither has been determined, but they are or may be treatable. However, everything seems to be waiting on the gastroscopy/endoscopy which was originally scheduled for Monday, and then Thursday, but, to date (Thursday) still hasn't been done.
Gloria is increasingly getting into a state where she can't seem to get comfortable.
Thursday
Gloria is now on the ward. It's a medical ward, so no specialty. She is awake, but somewhat dozy. I don't think she has had the scope, but the nurse here is just covering and doesn't know.
She is in a room with three very noisy, very old, men. The nurses all seem to be very loud as well and careless of privacy. I know everyone in medicine is busy, but there are ways to take more care.
The scope still hasn't been done. I asked about the noise and other issues in the room. They have a limited number of private rooms, all currently occupied by those with medical needs. In addition, because Gloria has no mobility she needs a lift and only a few rooms are thus equipped. But the nurse will make a note on the chart in case more appropriate space becomes available.
I went to have lunch with my baby brother and his wife.
As soon as I got back, she said, "Don't ever leave me again!" which is a bummer, because I'm parked on the street in a one hour space. (Although parking seems to be more available this time of day.) (Actually, the nurse came to do vitals, so I ran out and moved the car and got a pretty good space in the lot. Parking is more available that time of day ...)
Gloria LOVED the pictures of Benny (all of which she had seen before). She remembers him (and us) but is saying some truly bizarre things, and then getting annoyed when I don't understand them. (Out of the blue, "Equal melt." When I queried what she might have said that I heard as melt, she confirmed it was melt, and then was mad when I couldn't figure that out. Right now she wants to stand up and go to the bathroom, despite repeatedly being told she can't stand.) Some of the weird utterances are possibly explained by morphine some time this afternoon.
The guy in the next bed is yelling "owwwwww, owwwwww, owwwww ..." over and over again. Maybe if we ask eight separate nurses, we can get them to give him enough morphine to kill him ...
(Maybe that's my mental balance talking ...)
I've still got it. I just hauled Gloria up on the bed using a one person lift that I'm sure they don't teach in nursing school anymore.
Sunday:
Sorry, you shouldn't be relying on a massively sleep deprived individual for your updates on Gloria. I didn't give you much in the last one.
Gloria is not herself. That's understandable. Even infections or minor blood sugar imbalances can cause mood swings and hallucinations. Gloria has at least one infection, has just come out of a period of sedation, presumably may have nutritional imbalances because of the odd way they are having to feed her, at least two sites of cancer, and a massive ulcer. She is weak, reliant on others for everything (even moving in the bed), and in a not terribly pleasant (and right now very noisy) environment.
Gloria does show sparks of her normal self. She jokes and makes wry comments, and is even aware that her flippant comments may have to be articulated slowly and carefully because of her extremely dry mouth (still nothing by mouth), and extreme weakness. Gloria is frustrated with her dependence on others, her own weakness, people not believing what she says, being shifted around the hospital, and the inability of herself and others to figure out what is wrong, and put it right.
There are changes in Gloria's mental state, but it's hard to call them progress. Thursday she was weak, and some odd communications might simply have resulted from part of the comment or statement being lost in a noisy environment. Friday she was stronger (or her voice was), but she seemed more awake, but less aware. (Karen and Linda noted that she was more lucid when they visited in the evening, so time of day may have something to do with it. Gloria never did do mornings well ...) Saturday, the first time I visited her, she seemed, again, somewhat stronger, but very frustrated, and did not want to be in the hospital. The second time I visited she was sleeping, and I didn't want to wake her. She did rouse at one point, and wanted me to put Vaseline on her lips, which I did, but she then dropped right back off to sleep. Later, when K & L visited, they noticed that she was less lucid than the day before. Today, Sunday, when I visited she was even more delusional, and quite paranoid. She was refusing medication, although she took it, from me, when the nurse asked me to give it to her. (She's had the same nurse for two days, and the nurse is kind, dedicated, and is willing to pursue Gloria's mental state as evidence of some kind of deterioration.)
I raised some of these issues today with the social worker. It is all too easy for nurses and other medical staff, who see only one side of a patient, or a patient in one situation, and assume that this behaviour is normal. In Gloria's case it isn't. Two weeks ago she was running her own life (with a little assistance) and making her own decisions. Now it is much harder to tell that she is and was, competent. These issues need to be raised so that the staff can look to find sources of the problem, rather than assuming this is as it always was.
We will be meeting with the doctor and some staff (possibly Monday) to raise these issues, and also try to get more information on the restrictions on the stomach opening, antibiotics for the infection that caused the pneumonia, when the scope might actually be done, and whether anything can be done in terms of treatment or diagnostic measures while everyone is waiting for the scope results.
Monday:
Of course, it was just after I had sent the last update that the doctor called from the hospital. The timing was accidentally fortuitous, as Karen, Linda, and I all happened to be together, and I put the phone on speaker so all could hear and participate.
The doctor really had no new information to provide, but she at least outlined plans for further tests, which means that the hospital understands that Gloria’s currently deteriorating mental state is new, and not her normal behaviour or capacity. The previously observed pneumonia had been addressed with a course of antibiotics, but another chest x-ray is planned to see if it has either failed to clear, or if a new pneumonia has developed. A brain scan is also to be done, to check for any signs of a tumor or stroke. Various blood, urine, and sputum samples are being sent to the lab. The endoscopy/gastroscopy still has not been done, but the various resources necessary for that are all in high demand. We also provided the doctor with some relevant issues from Gloria’s medical and physical problems.
(Unfortunately, the call from the doctor seems to have led to a cancellation of the family meeting that had been arranged for Monday [today]. I understand the doctor's time is valuable, but I will try to meet with the other 4E social worker, and the charge nurse for 4E, so as to make contact with all the players. Perhaps Karen and Linda can attend a future family meeting, a little further down the road.)
The nurse that Gloria has had over the weekend has been fantastic, and has advocated and fought for Gloria. She has fully understood our concern over the deteriorating mental state. She also noticed that Gloria was becoming recalcitrant over drugs and some procedures, and so called and asked that I choose a time to be there on Monday for a specific appointment time for a brain CT scan for Gloria, so that I could calm her and encourage her to participate.
(I have always been impressed with those who chose nursing as a profession, and particularly registered nurses. The majority of the nurses who I have had the pleasure of meeting while they cared directly for Gloria during her stay have been kind, caring, patient, and hardworking. Priya, of 4 East in Lions Gate Hospital, has been exemplary. When I first met her, she immediately impressed me with her intelligence, analysis, dedication to her patients’ welfare, and also advocacy on their behalf.)
And then it all changed again. Very shortly thereafter, the hospital decided to do the CT scan that night. Karen and Linda had been intending to visit, so the nurse called to ask when they would be there. They dropped their plans and went right away. Possibly because they were there, Gloria was cooperative, and even joking and recalling childhood games with the girls. The hospital decided to do all the radiology: a CT scan of Gloria’s head, a chest x-ray (from enough angles that it might have qualified as a form of CT scan), and an abdominal x-ray.
So a great deal has happened in a very short space of time. We don’t have all the results and interpretations yet, but the examinations are moving forward.
Today (Monday) I was by the ward briefly (before official visiting hours), and chanced to meet today's nurse for Gloria, who told me that Gloria had just gone down for the long-delayed endoscopy, so hopefully we might start to get results from all of those tests soon.
Thank you to all those who have responded to these updates, and I'm sorry I have not been able to have the time to reply in detail to all. Hopefully these updates partly fill in that gap.
I've been back to visit Gloria. When I got there she had been taken down for yet another x-ray. When she got back she was still in delirium, although she does know who I am, and sometimes makes reference to events in our life. She was also weaker today. Initially I wondered if that was just because of the stress of going for the x-ray, but she didn't get any better over the course of the next hour or more.
On my way out, I stopped to meet the charge nurse for the ward. As it happened, my phone rang while I was with her, and it was the GI surgeon, so I put the call on speaker, and the charge nurse participated.
The results and consults will probably go on for the rest of the week, but, at the moment, the GOOD news is that someone might be prevailed upon to cut out Gloria's entire stomach, and insert a tube into her intestine, and she can spend the rest of her life "eating" a special liquid that gets poured or pumped in.
...
When that's the good news, the other options are pretty awful ...
We don't know the final results, but when people are dancing all around saying why do surgery if you are not going to live long enough to recover, then they are pretty sure that the results, when they do come in, are not going to be good.
Tuesday:
The internist on 4E called me this morning, as I was on my way to the hospital. There wasn't much in the way of new news.
There is a general surgical consult tomorrow (Wednesday). The surgeon will decide whether Gloria is a good candidate for surgery. Spoiler alert: Gloria has never been a good candidate for surgery. One of the reasons it was so hard to get her to go to the doctor in the first place was that she was afraid it would be another hiatus hernia repair surgery.
Gloria is back on a (mild) antibiotic. The chest x-ray showed some pneumonia.
The oncologist has been consulted, and will await the results of the biopsy.
The doctor suggested that we have a consult or referral to palliative care. I know what that implies, but I don't know what it means in terms of process, or what palliative care can do for us at the moment. It seems they may have some recommendations in terms of addressing Gloria's pain or general discomfort.
When I first got to the hospital, Gloria was sleeping. When she did, eventually, open her eyes, she wouldn't talk to me, even when I spoke to her and asked questions, and I wondered if she possibly did not know me. However, although she was extremely weak, over time she did start to respond. I told her that her niece from New Zealand had sent a message, and that did elicit a strong response, though not a verbal one. However, later when I did something she disapproved of, she said, weakly but fairly clearly, "Robert! You're going to get into trouble!" So she is in there someplace.
I did, finally, meet the internist who has been dealing with Gloria, and making attempts to keep me up to date by phone. Again, nothing new has developed, so our conversation was fairly brief, but it was nice to put a name to a voice on the phone.
Wednesday:
Gloria was very sleepy today. (She apologized for that, at times.) She did know me. But, if she started a complex sentence, she often got lost, and then her own "Markoff chain" function took over, and you'd get a sentence that sounded like English, and even logical, but just didn't mean anything. (Or meant something weird.)
Her mouth was very dry, so I asked if she wanted some ice chips and she said yes. So I went to ask for some ice, and happened to encounter her nurse for today, who said that she had pulled out the NG tube, so they couldn't give her anything because the NG tube couldn't suction away anything that did get to her stomach. If they don't suction her stomach, she aspirates the excess fluid into her lungs. The fluid creates more infections in the lungs, and more pneumonia. But the NG tube isn't nice, so Gloria, when she doesn't know what she's doing, pulls it out. So, when they put the tube back in, they have to restrain her hands. You know how Gloria is about being restrained.
Then later, when the nurse was going to put the NG tube back in, she was sort of apologizing for the fact that it was going to distress Gloria, but it was necessary, and the charge nurse threw in the comment, "Unless the family decides on withdrawal of care." I'm slow, these days (and got the wording wrong as well), but it took me a few minutes to process that and realize she was probably talking about palliative care, caring for the distress, discomfort, and pain, but not treating or undergoing procedures for, the underlying condition(s). I went back and confirmed it with the charge nurse. (She's been awfully good about making time for me. I must be a nuisance.)
The general surgical consult has been done, and it's bad. The pathology on the biopsy is not back yet. The oncology consult is waiting on the path report. I don't know what is holding up the palliative consult: the internist has to do it, and is maybe waiting to exhaust the other possibilities.
We are having a family meeting tonight with the grandchildren.
Friday:
Gloria has always said that she was never a fighter. However, she is stubborn, and I really don't know how you tell the difference.
Yesterday a charge nurse and a palliative doctor said she wasn't going to last the day. She lasted the day, and the night, and an unfortunate incident with oxygen supply. Except for a two hour nap in the middle of the night, I was there the whole time. Today another palliative doctor said she wasn't going to last today. Well, she's lasted most of it and shows no real sign of flagging.
She's definitely weak, and could go at any time, and she has to go some time, but she continues to confound all predictions of when that might be, including my own. Palliative care is addressing her pain, anxiety, and the secretions that make her breathing sound like a coffee perk, with different drugs. Gloria is weak enough that she doesn't really respond to anything, and spends most of her time with her eyes closed.
Thursday I was called in to the hospital, which only happens when they think your loved one isn't going to make it. By the time we got there, she was better than she had been when they made the call. At that point they thought that she might be too weak to safely make the transfer to the hospice, but they agreed to try anyway, and the paperwork for the hospice was put in place, and the transport was booked for some time between 1 and 3 pm.
Unfortunately, by 1 pm, there had been the CoVID outbreak on 4 West. Gloria was on 4 East, but the man in the bed across from her had come from 4 West, and so protocols were put in place, and the transfer to the hospice was cancelled. In the end, both the man in the bed across from Gloria, and Gloria herself, had both tested negative for CoVID, but, by then, it was too late for the transfer and admission to be redone, and other plans were being set in motion.
4E made a significant effort, gave up their break room, and the former solarium was turned into a family room for us. Karen, Linda, and all the grandkids, were allowed to visit as a family. This was an awful lot of work, and was very good of them.
Unfortunately, the 4E solarium is directly over the construction pit for the new Lions Gate Hospital tower. The construction starts at 7 am, and goes until 7 pm. And they've got some phenomenally noisy machines in there. Of course, it was quiet overnight last night, but, this morning, the second palliative doctor couldn't even conduct a conversation with me while one of the machines was running full tilt.
(K&L tell me that there was a glorious pink sunset last night. I know that this morning there was a glorious pink sunrise. Apposite, given how much Gloria loved pink.)
Again, this morning, they decided that Gloria was too fragile to transfer to the hospice. (Given how long she is surviving, one might question that assessment. However ...). Twice they tried to access two different beds on 7 West, the formal palliative ward, but both went to other cases. So, we are still in the solarium, which is noisy all day, but does provide us with space and access that is less restrictive than anywhere else in the hospital.
So, we wait ...
Saturday:
Well, Gloria's persistence has paid off. They decided (probably because they need the beds in 4E) that she could go to the hospice. So, tl:dr version, here we are.
The palliative doctor hadn't said anything further about a move when he saw us this morning. Since the construction wasn't going on over the weekend (or, at least, not to the same extent), I assumed that we were there for the weekend, if Gloria even lasted that long.
When the girls left at 8:30 pm, I lay down on the couch and actually slept until 10:30 (probably from exhaustion). I tried to nap a couple of times, but nothing took. At about 3:30 I tried again, and this time slept until 5. Then I kept at it, and must have succeeded, because next thing I knew it was about 6:30. So, altogether, I got about 5 hours.
I figured that I'd go down and get breakfast from the cafeteria, because the signage said it opened at 6:30. Which it does on weekdays, but it was locked up tight. As I was coming back, I met one of Gloria's previous nurses coming on, and she said it started later on the weekend. Couldn't find any sign, and she didn't remember exactly when, so I decided to try my luck for breakfast or coffee places. First I tried the Subway, because some of them do breakfast, but, even though the sign said open, it was locked up. Nothing else immediately within range was open except Tim Hortons. If Delta has the worst DQ in Canada, mid-Lonsdale has the worst timmies. Busy enough for 7-ish am, but no communication, English definitely a problem, sloppy sandwich making, and they got the order wrong to boot. The place is oddly crowded even with only a few people, and no attempt at making any kind of order out of the issues of the place. However, I did have breakfast.
Weather report for Central Lonsdale: showers. More showers. Heavier showers in between the showers. Very heavy showers. In other words, it's raining. And cold. And very strong outflow winds, which probably means it'll get colder.
The girls sent me home for a shower after my two days and two nights in the solarium. So, clean, dressed, and in my right mind (well, two out of three ain't bad ...), I came back to the hospital, ready to stay "for as long as we both shall live" in the solarium. I even managed to get a parking spot, in the covered parking, on the first try. As I was coming back to the ward, in the elevator lobby area on main, there were a number of people building as people waited until the elevator came. The next one opened right in front of me, so I got on and pushed "4." The others who got on were a pair with a gurney stretcher, with "Hospital Transfer" on their jackets. They didn't push any buttons, which meant that they were going to 4 as well. I almost asked them who they were going for. At 4, I got off first, but, as I was walking down the hall, I heard one of them say "Gloria Slade." K&L had been told, already, so I was able to tell them that the transport had arrived. The transfer guys allowed me to ride with Gloria in the van. And, wonder of wonders, after all the rain earlier in the day, it wasn't raining, and the sun even broke out, while Gloria was having her trip to the hospice.
The trip was a bit of a stress, as the doctors had said. But even that worked to advantage. Gloria was disturbed by the trip, but that meant that she was more alert, and kept her eyes open, for quite a while after we got here, so the girls, and I, were able to talk to her for about an hour after she first arrived. (She has since gone back to "sleeping," with her eyes closed and not responding.)
It'll be nicer, here, after sleeping on a narrow couch for the last two nights. (Well, not sleeping much: I got two hours sleep Thursday night, although I did manage to get a total of five hours last night, in three blocks.) There is a kind of pull out couch that makes up into something like an actual bed, or at least a futon type thing. There is also a recliner, although it doesn't go down as far as ours, so I'm not sure how much sleep I'd get with it. There is also a bathroom that is ours, rather than having to mask up and go out into the hall.
Mind you, the masking thing is still here, and even more intensely. To avoid getting a CoVID outbreak that would close the hospice down, we have to be masked all the time, even in Gloria's room. Visiting does seem to be open, though, although there is a volunteer "guard" at the door.
But, overall, this is much nicer than the solarium. The windows look out over a garden (even if nothing is growing but some rhododendron bushes right now). There is more space, and less abandoned equipment stacked up in storage.
It is a much nicer place to wait for the end ...
Saturday, later (written Sunday):
In the evening of Saturday, December 18th, 2021, Gloria laid aside her earthly body, which she felt had let her down so many times, and was given an incorruptible and eternal body by her Lord, who will keep her safe and well, away from pain and discomfort, in a way I never could.
In other words, Gloria has died.
In her final few hours at the hospice, Gloria was with Karen, Linda, and myself. She showed some awareness of our presence, and her surroundings and situation. She even had a bit of a concert (piano and cello) of Christmas music, somewhat impromptu, put on by a survivor of one of those who have recently passed at the facility. In recent years, as Gloria has been hampered in her ability to attend events, her one expressed regret was the lack of the musical events during the Christmas season.
Karen and Linda had gone home for the night, from the hospice, but came back to comfort me, advise my sleep-deficit addled brain on which of the many frantic actions that formed into an instant "death to do" list did not have to be done immediately, dealt, as far as possible, with those things that did have to be done right away, and took me "home." Which sounds strange, because now The Deep, Dark Secret can be told.
Two and a half weeks ago, when the hospital part of all of this started, Karen and Linda presented me with a plan. Since a) we were under threat of renoviction and would have to move eventually anyway, b) Gloria was having increasing difficulty with stairs, and sometimes even mobility, and c) Gloria was going to have a very hard time with "downsizing" into a place that was suitable and still within our price range, why not take advantage of the fact that Gloria would be in hospital, probably for at least a couple of weeks, and move now, while it didn't have to directly affect her. A few years ago Gloria and I had considered moving to one of the parts of the ongoing development at Sunstone, in Delta, where Linda has a place. K&L had found that there was now available one final development, not exactly a care facility, but a "55 plus" apartment situation, with (eventual) plans for meals to be available on site, as well as some housekeeping services. It is a three minute walk from Linda's house. It came with a dishwasher! (For forty years Gloria has bemoaned the fact that we do not have a dishwasher.) I agreed to the plan.
(When I noted that Gloria was going to miss Draycott, George suggested that I get a large transparency of Draycott that could be put up on a window in the new place, so I shot some pictures of and at Draycott.)
(Somewhat ironically, Sunstone, the new place, has been developed by Polygon--who are the people who are "assembling" a land package that includes our old place, and thus are responsible for our renoviction. K&L did not mention this when they proposed the plan :-)
Karen and Linda did all the heavy lifting, arranging for movers, cleaning, researching long-term storage for the stuff we couldn't throw away before Gloria could make decisions about it/them. I was allowed to spend a great deal of time with Gloria at the hospital, but, of course, needed to make "keep/throw" decisions about piles of stuff, cull my library and files (some of which go back five decades and more), give away almost all of my "vintage" computers (which tends to include the stuff I still use), and start the task of changing addresses for all kinds of services. Our address has changed, but the phone number is still the same.
Since, at this point, Gloria was in a coma in ICU, it was decided that it was unfair to let the whole world know that Gloria was moving except Gloria, and we wouldn't tell anyone until we could tell Gloria. I told Gloria as soon as she seemed to be conscious and aware. But, since people coming out of sedation may appear to be conscious, but later don't remember what they have been told or even said themselves, I kept telling her over subsequent days. And apparently she did remember, over subsequent days. (I was expecting Gloria to be mad at me for making this decision to move her without her knowledge or consent. She kept assuring me that she wasn't.) When Gloria was out of the coma, and we were sure she did understand about the move, we decided that Gloria would be the one to decide on the timing of the announcement of the move. Gloria decided that she wanted to sit on the news a little longer.
And then the situation changed, and Gloria's condition went downhill very rapidly.
The plan did not work out as we had hoped, but Karen and Linda's plan and decision was, and is, still a good one. I am in Delta, in a smaller place that will be easier on me, as my health and capabilities degrade over time. I still have a fair amount of work to do with the move, added to that of dealing with Gloria's death, but it would have happened eventually in any case. Being forced to get to know a new area and the necessary services will be a distraction from the fact that my best friend is gone and I can't talk to her any more. (Not that I don't talk to her anyway, even though she's not physically here ...)
If, for whatever bizarre reason of your own, you have any interest in following along, I will be doing more here at http://fibrecookery.blogspot.com/
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