14/16th October 2018
Carol had a stroke on the 2nd of October, towards the end of our Canada cruise.
She was initially airlifted by helicopter to Limerick Hospital, Ireland with a plan to transfer to Broomfield Hospital when she was fit enough to travel and when they had a bed available. The cruise ship did not have the equipment to do a scan to determine the type of stroke, which was necessary to decide the treatment. At Limerick a scan revealed that Carol had had a clot to the right hemisphere and a shower to both hemispheres. It was not known where the clot came from. She was recovering, but we had to wait to see how much she would recover. While stroke patients continue to make progress the signs are good, but once recovery levels off, further progress will likely be limited. A first stroke is often fully recoverable, with only mild side effects.
When I saw her first on Monday 8th October she recognised me, but found it hard to recall friends and family. She was speaking but only with simple yes/no, bad/good replies. She had paralysis in the right arm and leg. I showed her the birthday cards she had received while we were away, but I was not sure that she took it all in. I will represent them when she gets to Broomfield.
When I saw her last on Wednesday 10th October she could recall some friends and family, was able to clench her right hand and move her arm from the elbow down. There was some control in her right leg too. Her speech was better, but she had problems with nouns and comprehension.
I spoke to Broomfield stroke unit on Friday 12th but they are not aware of her arrival yet. It is still being dealt with at a consultant to consultant level. Saga Insurance are also involved as they will arrange the air ambulance.
26th October 2018
Carol arrived back in England, flying from Shanon to Stanstead on Wednesday 24th October and was admitted to Broomfield Hospital in side ward 3 of the Stroke Ward, E125. She was in isolation in her own room which is a precaution taken when receiving a patient from another hospital to combat drug resistant infections.
When she first went to Limerick they gave her a scan (it might have been cat or NMRI) which showed it was a clot that caused the stroke and not a haemorrhage. She was making good progress and I came home expecting her to follow early the next week. On Friday she deteriorated and a scan showed she had bleeding. They took her off Aspirin which had replaced Rivaroxaban and called me back. She picked up and started to improve again. She had another scan which was clear and an ultrasound which was also clear, and so the repatriation went ahead. It took me a day and a half to get back, but I saw her Thursday and she was bright and cheerful. She was a bit down today but I checked with the staff and she is OK physically.
Rehab will be a lengthy process. She can hold both arms above her head without the right arm drooping, but her right leg is only just starting to respond. Her memory is a little better as she can now recall bits of our Canada trip which she had no memory of before. Once she has completed quarantine she will go on the main ward while they continue assessment but eventually the plan is to go to St Peter's Maldon for her remaining rehab and later return home with outpatient support from Maldon.
I have been passing on your good wishes and shown her all the get well cards.
17th November 2018
I have not done an update for a while as progress is slow, I was waiting for better news. Carol has moved from E125 to E222 (Goldhanger ward, on the second floor. This is a general ward but is used as a "step down" for stroke patients that just need to achieve the rehab requirements for Maldon or home release). She has had some set backs, infections which they are treating with antibiotics. She seems to be now becoming more aware of her condition; poor memory, vision defects, etc., which is causing her distress and anxiety, but it is also another sign of progress. We still do not know how much further progress will be made. She has not had a lot of rehabilitation therapy yet, other than people talking to her, because she has not been well. Once she is medically fit, she will move to Maldon to continue rehabilitation. She has said that she would prefer not to have visitors at the moment as communication is difficult for her. She also has large mood swings and can say things in a bad mood which she feels remorse over when she recovers. Although many of you would not care, or could make allowances, I do not want her to get upset over what she has said.
She had a chest X-ray last week which showed a lung infection, and a CT scan on Thursday but I have not yet heard what it showed (later: it was clear). I fear this is going to be a long process, so we will not be around for a while. I took in her birthday and get well cards again today and read through them all to her, and she was touched that so many kind people are thinking of her and wish her well.
5th December 2018
The news is not so good now, she has had a bad time. Overnight on Sunday 18th November she had a third stroke and has now lost her speech, further mobility on the right side and the ability to swallow. She had a CT scan on the Monday which confirmed the stroke and localised the area of damage. On Monday night she was moved back to side ward 9 of the stroke unit. It was noticed that she only looked to the left and was ignoring the right side, so on Thursday she was moved to bay 1, still in the stroke unit, as an attempt to help with this. There is more for her to look at on the left, but all the activity in the corridor is on the right. This was an unfortunate move, as over Thursday night there was a case of Norovirus to one of the other patients in her bay. On Friday morning my open visiting was revoked as the bay was closed due to sickness (unconfirmed as to what it was at this point). I couldn't make the visiting time as I had a nurses appointment, booked while she was on Goldhanger ward. They had probably closed the whole ward by then anyway, as it is very virulent and a major concern in hospitals. On Saturday morning I found the whole ward closed to all visitors. On Sunday they closed the whole hospital to visitors. On Wednesday the other wards opened again, but the stroke unit remained closed. It re-opened yesterday after 10 days of closure.
I got there at two o'clock and Carol was having therapy, so I waited until 2:30 when they finished. (Despite what the web site says "all wards are open 2pm to 4pm", the stroke ward is as it was, 2:30 to 4:30.) At first I had a terrible moment as she didn't recognise me, and I feared she had deteriorated since I last saw her. The therapists pointed out that she was looking at me, but there was no smile of recognition. A bit later on I realised that she didn't have her glasses on and so was having problems recognising me. Once this was rectified, I did get half a smile; the right side of her face is still immobile. The therapists also reported that she had been sitting on the edge of the bed, had opened her mouth in response to the therapist saying Ah!, but no sound had come out. They say progress is being made, albeit slowly. They also said that she would not go to Maldon unless she could sit unaided for some time (I forget how long) and not while she still had a nasal feeding tube. When it came time for me to leave she did not want to let go of me. She has had a large set back from where she was on the last update; she largely has a blank expression and has virtually no communication, but I can still glimpse her in there. She can wink her left eye and just about manage a nod to say "yes", but this is sporadic.
I know that many of you local to Chelmsford have asked about visiting, but prior to the last stroke she was anxious over visiting as she was aware of her mood swings, conscious of her poor communication and thought it should be delayed until she improved. Now her position is worse, and although she can't tell me, I am sure she feels the same. I do pass on to her all your good wishes.
18th December 2018
The infection that closed the hospital started in Carol's bay. The sister, rightly so, was unwilling to say who was the source, but told me it was not Carol. Though she did get infected, she is now all clear, as is the ward. It was bad, closed for 10 days, some of the staff caught it too. They have deep cleaned all the beds and everything is back to normal now.
I was told when Carol first came to Broomfield that there was a shadow on the final scan done at Limerick, so they had done a blood test which had shown up indicative markers. She was seen by a gynaecologist who confirmed ovarian cancer. The treatment for this is surgery, but this is not advisable for three to six months following a stroke, due to the risk of causing another stroke, among other reasons. I spoke to one of the doctors about my fears that the third stroke indicated she might yet have another. I thought that this might impact on the decision to delay treatment for the tumour, but he told me that she was at risk not only from the tumour but also from her arythma, either could have been the cause of the initial stroke. They have been unable to determine which risk is the greatest, however they are treating her aware of the risks, but with optimism. He gave me confidence that she is getting the best treatment. Carol does not know of the tumour yet, we all thought that she has enough to worry about recovering from the stroke. They are concentrating on treating the stroke and are leaving the tumour for now, to be reviewed later. She has regular paracetamol which is effective for the pain.
She is not like she was before the third stroke, she is largely blank but interested in what is going on around her. She has virtually no communication. She only has good vision in her left field of view and when she recognises someone, her face lights up. Her smile is a little crooked, but her eyes shine.
In preparation for Maldon it was decided to fit a PEG (a feeding tube direct to the stomach via the abdomen). There are two sorts; PEG which is administered via a camera and a radiological one (RIG) which is administered via X-ray. She will have the latter version, as the tumour may have distorted the geometry of the stomach. They may be the same device, just different techniques, I am not sure. The Nasal Feeding tube is only used short term because of risks of infection, which is apparently higher when the patient can't swallow. The PEG can be used longer term than the nasal version as it does not have the same risks of infection. It is a surgical procedure, but under a local anaesthetic and sedative, so is OK for stroke patients. Carol had her procedure at 3:30 on Friday 14th, but it was not successful. On Monday her consultant told me that the surgeon had said the chance of this being successful was low. I asked the consultant if this would rule out Maldon and he indicated there might be other options. He needs to speak with the surgeon.
Carol has now started to speak, at least she is trying to, but the output is random sounds rather than words, but it is progress. I tried her with the pattern matching exercise she was working on before, and she recognised it but could not do any of it. She is not ready for that yet, but can now start on speech therapy again. They have been trying as I found the kit of objects on her bed one day.
It is difficult to know how much she comprehends. I tried asking her if she could nod for yes and she did. I tried again later and only got a slight movement. Another time and I got nothing. Her last stroke has damaged her motor control, hence the inability to swallow, so this may have affected nodding too. She winks her left eye and today laughed when I put my tongue out to show what the consultant was asking her to do. I have been unable yet to find a way to get her to communicate with yes or no. A shame as this would open up dialogue via a sort of "twenty questions" technique.
She has good movement of her left arm. On Tuesday, when the ward opened again after the virus outbreak, when it came time for me to leave she gripped my hand so tight I had to use both hands to extract it. It would have pleased the physios, I often hear them saying "grip my finger, tighter, see if you can hurt me". She has restricted mobility in her left leg in that she can only bend her knee so far. (This appeared to be temporary as she was escaping the anti-thrombosis leggings, see later). Her right arm was weak, though progressing, but has now relapsed. Her right leg has always been the worst, she had problems with it before the cruise. I am wondering if she had had an unrecognised mini stroke before the cruise. This is academic now.
The physios asked if I could take in some things that Carol could relate to. I took in four items; her childhood teddy, a cuddly puffin, a cuddly cardinal (American bird) and a skull. It is a model (full size), not a real one. I asked the physio if she knew what is was. She knew it wasn't human and thought it was an ape. Not bad, it is actually a Neanderthal. She asked why would Carol be interested in that. I told her that she had studied Neanderthals. (Those of you in the S&T U3A group will have seen this before when Carol gave her talk). The Neanderthal skull was very successful, when Carol saw it her mouth opened and her eyebrows went up. I left these in a bag beside her bed and one of the nurses found it; the physios hadn't passed the warning on, so she was shocked by the skull and told the sister. "Who would bring such a thing in to a hospital?". Now that I have explained was it is, things are OK again, but we keep it hidden from the other patients.
When Carol had the third stroke they tested her for swallowing on the Monday morning and put her on NBM (nil by mouth) which meant she needed a nasal feeding tube (NG). I was there when the nurse did this and it was impressive. She sucked out some liquid with a syringe and tested it for acidity (pH test), then put air in and listened for the bubbles with a stethoscope, so she was sure it had gone down the right opening before they used it.
I asked the doctor how they could stop Carol pulling the tube out and they brought out a mitten. (It is a pair actually, but she only needs one). It is very clever, quite large, but lightweight. It has several layers of stiff material on the palm side, so it does not allow gripping. It is often very successful for normal patients, but Carol is resourceful and managed to pull the tube out over Monday night. Remember she is right handed, and only has the use of her left hand, impeded by the foolproof(!) mitten. They replaced the tube on Tuesday using the right nostril instead of the left, so I pointed out that it would probably irritate less as it is on the stroke side. They admitted they hadn't thought of that.
She seems to be comprehending her situation better now than she did, and must have accepted the tube as she no longer fiddles with it, which is why they have taken away the mitten presumably. They are not keen on using them, a last resort only. When we discussed this, the consultant asked about other family who might object to her having to wear it. I assured him there was only me to worry about, and I had every confidence in his decisions, as does Carol. He always gets a beaming smile when she sees him. I think she is aware how ill she is, and how she is relying on his skills.
It seems I was hasty in accepting that the mitten was off because it was no longer needed. It seems that it might have been an error, as after I left on Monday she pulled her tube out again. This was undetected for a while, meanwhile her drip regulator was pumping out the feed all over her top. More washing for me. Today, when the nurse came to replace the tube she suggested I should wait outside the curtain. I told her I had seen it done before, so she agreed that I could stay if I didn't mind. In the event it was just as well, as I was able to restrain Carol's left arm and hand, which are getting pretty strong now. The nurse tried the acid test to prove it was in the correct opening, but as Carol had not had any feed for a while, the nurse could not collect any stomach fluid. She had monitored oxygen level during the insertion, which would have dropped if the tube went in to the lungs. However, they have now requested an X-ray check to be sure. She has a different design of mitten now, this one looks more effective.
20th December 2018
Things have taken a turn for the worse. Yesterday Carol was all right in the morning according to the nurses, but when I arrived for visiting in the afternoon she was asleep. I tried to wake her but was unable. The speech therapist wanted to assess her and also tried to wake her but failed. At times Carol would open her eyes and move them, but did not appear to be awake. I suspected another stroke and informed the nurse. The doctor was called and later in the evening a CT scan confirmed she had had a further haemorrhage.
Today she was awake, but didn't recognise me nor respond to any stimulus. I have not spoken with the doctors yet, and I am hoping for some slight improvement tomorrow, but the set back is worse than it was for the third stroke. At the moment it seems to be one step forward and two steps back.
27th December 2018
I was hoping for some slight improvement by now, but after a week Carol is still the same, which is worrying. I visit her every day, but is hard seeing no change; she does not recognise me by sight, sound or touch.
Due to the Christmas break I have not yet seen any of her regular doctors. There is the question of what can be done about the feeding tube and what the longer term prospects are. I did speak with the duty doctor on call when she had the fourth stroke, but she was only able to tell me that her blood pressure was high at the time but is stable now.
I have kind offers of help from family, friends and neighbours, but there is only one person that can help me and she is unable to at the moment. Sorry there were no Xmas cards this year as Carol normally sorts all that out, but I don't have access to where she keeps all the information. There are still family members I have not been able to contact.
2nd January 2019
When I went in on Monday 31 December, Carol had no feeding tube. I asked the doctors why, and was told she pulled it out and would get another. I checked with the nurse and it had happened around 9:00 in the morning. I asked if she had had her blood pressure medication and was told no, because she had no tube. I pointed out that she had had no food and no liquid and they replied that they were going to get her a drip. I also pointed out that without medication she was at risk of a 5th stroke. They brought a tube but were unable to insert it, she had a nose bleed in the left nostril and the right one was blocked (previous nose bleed possibly). I said the doctors should be informed which the nurse did.
On New Year's day I went in at 11:00 (extended visiting) with some trepidation, not knowing what I would find. It was a great relief to find Carol her normal unresponsive self, rather than comatose as we found her last Wednesday. Again when I arrived I thought I detected a brief moment of surprise in her eyes when she saw me, but it might have been wishful thinking as I could not evoke any other response during my stay.
Carol has a tube back now and another Mark II mitten. The nurses failed to administer an NG tube to either nostril while I was there yesterday, but the doctors were successful in the evening, (actually a nurse with a doctor present - 6/1/19). However when the nurse extracted liquid for the pH test (to confirm the correct placement), it contained brown staining so they have referred this back to the doctors as it may indicate bleeding in the stomach. She did have nose bleeds yesterday, so it may have come from there. Until the doctors OK that it is safe to feed via the tube, this might involve another x-ray (it was confirmed safe by x-ray - 6.1/19), they are feeding via an IV drip.
I queried her medication for blood pressure and she has missed two days now. I raised the concern that this increases her risk of a haemorrhage stroke and Martha said she would bring this to the attention of the doctors. Only they can authorise an IV alternative to the NG method of medication. If they give the all clear on using the NG feeding tube, then Martha will arrange for this mornings blood pressure dose to be given today, it is prescribed as "daily" and although normally given in the morning can be given anytime. If the tube is not cleared for use, then it is up to the doctors to find an alternative. I spoke for a while with Martha who was kind and helpful.
Today, Wednesday 2nd, Carol is back on feeding via her NG tube. I saw Dr Kirthivisan today and he is also disappointed that he no longer gets a smile of recognition. He told me that Maldon is now no longer the next target. Once they have found a solution to the feeding tube problem then, providing no further set backs occur, she would move to a care home to free up the hospital bed. The long term goal is still rehab at Maldon, but this would not be until she showed an improvement and fulfilled their requirements.
8th January 2019
Progress is slow but steady, superficially Carol remains unchanged. We get no smiles of recognition, however I think there are subtle signs of improvement. Although I get no response in her eyes, yesterday she did hold her hand out to me to take. While the physios were with her they went through several of their diagnostic steps such as "say Ah!", "put your tongue out" and "raise your left arm". Several times I heard them say "see, she is trying" and "good". (I sit outside the curtains while she is being tested as it is important that she is not distracted while being assessed.) Deidre also thinks that she understands more than she can respond to.
The worrying thing is that we have lost the smile of recognition. We know that she had problems seeing things in her right field of vision, this was before the third stroke. It seemed to be worse after the third stroke, but it was difficult to assess how much because she lost speech and couldn't answer us. She was just beginning to get speech back when the 4th stroke occurred, which seems to have caused further loss. It might be that her vision has deteriorated. She looks at things, but does not retain attention on anything for long. If her vision is impaired that might explain the loss of the smiles.
19th January 2019
Unfortunately not a lot to report in terms of progress, but there have been some developments. Carol was due to have another procedure for inserting a RIG on Tuesday but it had to be cancelled due to other priorities, so was rebooked for Friday. I see a lot of blue flashing lights on my journeys on the A130 and A12 to Broomfield and sometimes hear the helicopter come in at the hospital, so I understand how busy they can get with road accidents and other emergencies. Let's just hope we don't get a bad spell of snow and ice this year.
As I see Carol on a daily basis it is hard for me to detect changes, but my daughter Jane and Carol's friends Deidre and Paul (who is a member of the Broomfield Patient Council) also visit from time to time to give me support. They all report seeing some improvements. Jane noticed that if you stroked her arm, she held out her hand to you. Deidre asked Carol to hold out her hand so she could check her mitten, and Carol responded. The doctor we talked to on Tuesday also said this, and that she wasn't able to do this on Monday. He said the RIG procedure might still fail, but the team had discussed this and they thought another attempt was worthwhile.
As Jane and I had both noticed that Carol's arm trembled when she held it up for any length of time, a possible sign of muscle weakness, I spoke with the physios and asked them to show me how to do passive exercises with Carol to strengthen her arm muscles. I have done these a couple of times since. Now when I pick her arm up she holds it straight up ready for me to start. There are still no facial expressions, but it shows that she is in there, even if it is difficult for her to communicate with us.
As Carol's procedure was due Friday afternoon I got permission to visit on Friday morning. This was fortunate as I saw Dr Kirthivisan, her consultant, who with no other visitors in and no pressing cases was able to discuss things with me. At the moment Carol has her normal blood pressure medication, but no anti-coagulants. These are meant to help prevent a clot, possible because of her arythma or atrial fibrillation, but these didn't prevent the initial embolism stroke. The problem with giving them now is that they could make a haemorrhage stroke more likely. At the moment Carol's medical team are walking a tightrope between the two risks. As time goes on, and healing occurs, the risk of haemorrhage might reduce and so they may use a different anti-coagulant. Rivaroxaban didn't seem to work very well, aspirin caused the first bleeding, but they are thinking of another one, (the same as Limerick had planned). He also talked about her procedure. They were hopeful of more success this time. Much discussion and consultation had taken place between Carol's medical team, the surgeon and the radiologist.
On Saturday, when I went in at normal visiting, there was bad news, she still had her NG tube. I asked the nurses if the procedure had failed and they replied "equipment failure" which they got from the notes but did not know what this meant. I will possibly find out more next week.
Paul visited the ward this morning but as she was asleep he did not disturb her but spoke to the nurse in charge who reported that Carol is "Holding her own", a good description, she is making very slow progress, but has not given up.
A patient with a simple single stroke can recover in a matter of weeks and spend a couple of months in rehab. Carol has had four strokes since the beginning of October; the last one a severe one, and although was making good progress at first, since the fourth stroke progress is very slow and recovery is likely to be limited. She has not had a stroke now for four weeks, which is a good sign, but she still has the tumour to be dealt with.
26th January 2019
Sunday was quiet as usual, though I did passive exercise on her right arm and managed to get it straight; it had been locked in a bent position. On Monday the day Ann was due for her PEG she still had her NG tube, so I asked the nurse if there was a problem. No, she was just about to go. I noticed that Carol didn't have her NG feed, but did have a saline drip, and queried this. She was due an op later on too, so was on IV liquid only. Ann left about 3:00 but was not back by the time I left.
A nurse noticed that Carol didn't have her leggings on the left leg. She found it in the bed and put it back on. About 15 minutes later I had to tell her Carol had got it off again. She waits until it deflates (when the right one is pumping up) and then pulls her leg up out of it. She has found that she can catch the connector on the bottom of the bed to hold the legging still, sometimes it holds and she gets out, sometimes it gives way with a bang so she tries again. One day she will break the connector. If Carol had been at Colditz, she would have had the place empty in a matter of weeks.
Later on another nurse came back and started Carol's feed up again and informed me that her op had just been cancelled. Her right arm has stiffened up, though not fully, so I did some exercise on it and got more freedom in it, but not as good as it was yesterday. I was a bit hampered as she had a cannula in that arm for the saline.
On Tuesday Ann had got her PEG and her husband was informed by the nurses that she would be moving to C block (I think Braxted Ward). Carol didn't have her NG but this wasn't because she had got her RIG (it had been cancelled again) but because she had pulled her tube out overnight. I saw one of her doctors and he explained that they took the decision to leave the NG out and put her on saline so that she would be ready for an op if there was a slot. In the event she didn't get scheduled Monday or Tuesday so they fitted another NG. I also told him how she got her leg out of the leggings. He explained that if Carol had enough mobility in her left leg to extricate it from the legging, then that was not a concern. (She gets her left knee almost up to her chin). The leggings are used for immobile limbs, so it is the right one which is important and she can't get that off. At least she hasn't managed yet.
On Wednesday I heard one of Ann's visitors calling her Joan, then I noticed that it was a different patient. Carol was very quiet and subdued today. People often suggest ways to keep her from getting bored by the monotony; such as videos or music. She can't work a phone or a tablet herself. They do have patient TVs available, but they are very expensive (daily subscription). There is radio available free on these, which the staff did try, but she seemed to ignore it. There are headphones available for them but these are only suitable for those with full faculties because of the danger with the lead. I have tried photos, videos and music on the tablet which were successful before the last stroke, but these no longer hold her attention.
On Friday Paul visited the stroke ward at lunch time and saw Carol, but she was asleep so he did not disturb her. When I visited at half past two she was also asleep, but without her NG tube. I checked with the nurses if she had pulled it out again or had now got her RIG. She had apparently only just got back from the procedure. It must have been a strong sedative, maybe a horse pill would be needed to subdue her. She is surprisingly strong for someone bid-ridden for so long. I sensed that the staff were all very pleased that Carol was finally sorted out after three failed attempts. I asked if Carol would now be moving, which since beds are at a premium in the stroke ward seems likely, but they did not know. Carol will need a new plan now but this would need to be prepared. That will probably happen with a team meeting maybe on Saturday or perhaps next week. Although Carol's plan has longer term considerations in it, they are only provisional; as we have seen with Carol, things can change as new events occur. The main concentration is always on the next step, which recently was the PEG/RIG issue. Carol still has her mitten on, as she could pull the RIG out. I think it is not so easy though, one nurse mentioned the word suture. I haven't looked to see how secure it is, but I know how persistent Carol can be.
Those who do not get regular updates from me might be expecting Carol to be well on the mend by now, seeing it has been several months. She is worse now than she was at the beginning of November, due to the two subsequent strokes each causing further damage and setting her back. However with the resolution of the feeding tube issue, rehabilitation can now start in earnest. If she moves to block C, visiting times are longer there, so I can spend more time with Carol and assist in the rehabilitation. When progress is slow and there are good and bad days, it is not easy to assess progress. The staff use standard diagnostics to help with this. Even the staff are not able to observe her continually due to shifts by the nursing staff and the need to attend to many patients. When observations are samples taken at particular times, they can be misleading, as shown in the graph (just an example, not actual data). To see good progress one needs to observe rising peaks and/or rising troughs, but unless one is there all the time it is not possible to know where the peaks and troughs are.
The wavy line is representative of her state, ups and downs. We don't know the actual shape for Carol because she is not observed all the time, this is just an hypothetical case. The three crosses represent three visits, separated by time. Where she is at the time on her state curve, that is what will be observed. The assumption is that if each observation is better than the last then she is improving, as shown by the slopping line. However the reality might be that she is in a steady state and although there are peaks and troughs, over the long term her state might average out as level. It is difficult to assess her actual state however unless observed over a long time scale, or standardised tests are used and recorded.
When I went in today (Saturday), she no longer had her mitten on, and I was told she no longer needed it. It will be more comfortable for Carol and she now has full use of her left hand, which although it is not her dominant hand is rapidly acquiring dexterity. Time will tell if this is a safe and wise decision.
30th January 2019
I noticed on Sunday that her tracker was missing. I reported it and the nurses had a look but couldn't find it. (On Wednesday it is still missing). I suggested to them that as it was a tracker security should be able to tell them where it was, a bit like ringing your phone when it has dropped down the back of the sofa. It might have gone out with her old mitten. In fact I found her mitten later see further down and it wasn't with that.
I asked on Monday if she would be going to Zone C (where Ann went). The nurse ( I haven't seen her before) didn't know but checked and later told me that she would be going sometime, but not yet as they are not short of beds on the Stroke unit at the moment. I guess they optimise the beds across the wards according to demand. It maybe that they are short of beds in the care unit, but have room in the stroke unit, or it may be that they are keeping Carol on the stroke unit while they can, in case of another stroke.
It could also be that they want to check the RIG is working fine with no complications before she moves. Although her mitten was off on Saturday and they all think it is no longer needed, it was back on Monday, so I checked with them, “had she found the RIG?”. “No” they said, it was to soften the blows when she fights back in caring sessions. She packs a hefty left hook. Perhaps I should get her some boxing gloves. One of the care nurses also reported that she had got a smile from Carol; I haven't seen one of those in a long while so perhaps things are starting to look up. She was fine when I left.
On Tuesday things were not so good. She didn't look at all well. I spoke with the nurses who said she had vomited in the morning and they had given her a slightly stronger pain killer (than the paracetamol) which also has a sedative effect, so it was hard for me to judge. I was worried that she may have had another stroke, which would be a pity as it now a month since the last one. She did look similar to the way she looked after the fourth stroke, but it may have been the effect of the medication. I brought home the washing as normal (they leave any clothes needing washing in a green plastic bag marked "patients belongings").
Before going to the hospital I emptied the tumble drier to hang out the washing and found one of Carol's mittens in there. It had been in with the rest and I hadn't noticed. On Wednesday she looked better, her eyes were moving normally, yesterday they were locked hard to the right much of the time. She was now on oxygen and her feed was replaced by saline via IV drip. Several staff, including a doctor, came and updated me that she has an infection which is why they have replaced the feed with saline and were treating her with antibiotics. The doctor said she was worse today (Wednesday) than yesterday. Maybe her temperature was up, but she looked better to me.
7th February 2019
She had been bad since Monday evening last week (28/1). She had an infection which they were treating with antibiotic and they had given her a stronger painkiller which had a sedative effect making her drowsy. Because of the painkiller it was hard to judge, but I suspected another stroke. On Tuesday (29/1) her eyes were stuck hard to the right. I told both nurses and a doctor of my suspicions. She was asleep all the time I was there on Friday 1st February, with just an occasional movement. There is not anything they can do for a stroke anyway, unless they catch it within a few hours and it is a clot. Easy to spot if a healthy person gets a sudden stroke, but very difficult in Carol's state. Carol's last stroke was bleeding and I am unaware of any treatment for that other than rest and natural healing. If she has indeed had another stroke prognosis will not be good.
On Saturday Carol was drowsy, but awake for some of the time, though there was no response to any stimulae. On Sunday she was still on medication and uncommunicative as normal, but I sensed her there. At quarter to eight in the evening they rang me and said that her heart rate was up, they had called the doctor and suggested I should come in. When I got there she was on full oxygen (mask not just the tubes) and her heart rate was well up, 110-140 rather than 60-70. Her breathing was laboured and her lower limbs were cold. The doctor told me that a cardiogram had indicated that a heart attack could be imminent. I stayed for 45 minutes or so during which time she didn't change, so I told them I would go home and come back in the morning. The sister said before I went, "You do realise how bad she is". When I got home I had another call saying that they thought she might not last the night, she seemed to be shutting down. I told them I would call in the morning, but I didn't want to watch her die.
It was a good job I didn't stay through Sunday night. She pulled through and although her lower limbs were still cold, and she was still on oxygen, her heart rate was back down to normal levels. Her consultant called me in to discuss things with the team. I saw her scans which were frightening in how much had been affected. She was in danger of another stroke at any time from either the tumour or arythma and the latter could cause her heart to race again. There is no treatment for the strokes as it would normally be anti-coagulants but they daren't give those because of her previous bleeding. There was no plan to move her to Block C, she would stay on the stroke ward and get treatment to mitigate symptoms as they arose. He was distraught that he didn't have better news for me. From her partial recovery Tuesday the final outcome maybe a little way off yet, but it seems inevitable.
I rang Wednesday morning and was told she had been moved back to side ward 3 (where she started). I went in about 8:45 (90 minutes for a half hour journey). She was now on Morphine and was sleeping for most of the time. I went home about 1:30 p.m. and got a call in the evening to tell me that she had died.
It has been tough as I knew this was coming, just not when. After the third stroke, full recovery seemed unlikely. After the fourth stroke and the lack of progress, coupled with the possibility of further strokes, recovery seemed unattainable. The consolation is that in her final hours Carol was free of any pain thanks to the morphine and not aware of her situation and will not have to face a prolonged period of living in a care home in a semi comatose condition.
I was told that Carol could still hear what was said and was aware of who was present. That may be true for many stroke cases, but having seen her scans I am not convinced, especially if she did have a fifth stroke last week. I am not a believer, and neither is Carol, but if I thought Carol was aware that I was there then it would be my duty to be with her throughout, I didn't want her thinking she was alone, but I am unsure that this was the case.