Monday, 17 June 2013

It started on The Day after Father’s Day 2011

Monday: (day 1) 20 June 2011 The day started as usual. I took Lucy to school as my husband, George, wasn’t feeling too good. I left him in bed. When I got home he got up and watched some TV in the kitchen. He talked about going to an engineering place in Bracknell to collect the Dodge Superbee cylinder heads that we had taken there a few weeks before, and after lunch we did that. Whilst at the engineering place, George felt dizzy and went to sit in the car. As we left, he started to speak incoherently….slurring his words and not making any real sense. He knew this was happening and that something was wrong so we went to A&E at Frimley Park hospital….collecting Lucy from school on the way. We waited in the A & E for a while, I phoned G and Amy and they both came over. George was feeling a little better by now but they arranged a CT scan which he had a little later. The CT scan showed some pressure inside his head but no reason why, perhaps fluid/water for some reason. They decided to keep George in the hospital and have an MRI scan the next day. I had gone home in the meantime to collect George’s overnight stuff. I particularly remember that one of the on-duty doctors reassured George by saying “Don’t worry, we’ll find out what’s wrong and get it sorted out so you can go home”. George was never to return home again.
Tuesday: (day 2) During the day George had an MRI scan which didn’t show anything more than the CT scan did. It was decided that a lumbar puncture was needed to investigate further. George was relatively comfortable and in quite good spirits but still feeling dizzy and nauseous at times.
Wednesday (day 3) No real change, still waiting for the Lumbar Puncture. We were told it was going to happen but nothing did. I was spending most of the day at the hospital then collecting Lucy from school, going home then going back to the hospital until closing. We decided that our holiday to Italy in July should be cancelled.
Thursday (day 4) Lumbar Puncture was attempted but because of a lot of scar tissue on George’s lower back (as a result of several back operations) it was proving difficult to get the needle through so it was decided a more experienced radiologist should do this. George is getting a little frustrated now at these delays. I notice that one side (his left) of his face is beginning to droop slightly and he tells me that when walking to the toilet his feet don’t seem to go in the right direction..

Friday (day 5) They are still talking about doing the Lumbar Puncture. George had a shave this morning. George was seen by a neurologist, on Friday afternoon, who ran through some tests with him whilst I was there. The neurologist wrote in the hospital’s patient’s notes “Malignant Meningitis ?”. The hospitals don’t really like these notes being read by visitors, but I was glad that I did. I didn’t mention this to anyone as it was only a suggested diagnosis at this stage.
Saturday (day 6) Finally, the lumbar puncture was performed. Preliminary results show an infection but not what that is. A course of antibiotics are started intravenously as a precautionary measure while waiting for the results to come through.
Sunday (day 7) Very hot day in the hospital….stifling and airless. The doctors are now thinking it might be some sort of meningitis either bacterial or viral. They have to grow a culture from the lumbar fluid for 5 days. George has had so many visitors that we have been asked to limit the number at any one time. So many people have been to visit him.
Monday (day 8) For the last few days George’s walking ability has been deteriorating. He can’t walk on his own so he has been trying to use a bed bottle for weeing but this isn’t always easy and he keeps insisting he wants to get up to go to the toilet. There aren’t enough staff available for this to be practical as he needs supporting and supervising. He isn’t happy about this at all. A big set back this morning. When I arrived George was sitting in a chair, he’d had a messy “accident” and needed cleaning up. The male nurse was using a hoist to get George back into bed but George had some sort of seizure and collapse. They called the “crash team”, it was panic stations for a while and I feared the worst but after a little while George regained consciousness. (With hindsight, it would have been far better for George if the worst had happened then)
Tuesday (day 9) Still no results from the LP. George is a bit uncomfortable, he says his back and his legs hurt, probably from the collapse the day before. He has suffered from the seizure. He is less able to hold a conversation, remember anything for too long and can’t really stand unaided. It’s becoming a bit of a battle to get him to think about having a shower and/or shave. George is still receiving lots and lots of visitors. He seems to perk up when there are more people around and several people comment that he doesn’t seem too bad. He talks about going on holiday when he gets out. He is eating very well as he has been given steroids (to help his symptoms) and these are known to increase one’s appetite.
Wed (day 10) This afternoon the results of the Lumbar puncture come back and it's not good news....not good at all. The nurse and doctor ask me to come to their room and they explain that it is malignant meningitis. They have had no experience of this and explain that they have looked on the internet (as I already have done) and they tell me that the prognosis is not good. They are going to arrange for the Consultant and a Macmillan nurse to speak to me today and then contact the Consultant Oncologist at St.Luke's in Guildford about the course of treatment to take. As this is quite a rare type of Meningitis, only the Consultant Oncologist will know anything about it and what to expect. George has been told that it's quite serious but not what the prognosis is. I hadn’t told Amy, young George or Lucy yet either until I have talked to the Consultant Oncologist as I didn’t want to mislead them in any way. They talked about George coming home (perhaps within the next few days) and then going to St. Lukes's for treatment as an out patient. This afternoon/evening he was really unsteady on his feet and confused and starting to imagine things had happened that hadn't, so I’m beginning to think that coming home might not be a good idea, especially as the deterioration is quite noticeable from one day to the next. I have spoken to George’s twin brother and he is going to come up from Devon to see him very soon.
Thurs (day 11) A brave but uncomfortable smile.
Not easy to keep things together as I know what is going to happen and of course George doesn’t yet. Early this evening the doctor and Macmillan nurse have a chat with George and talk to him about the severity of his condition. We agreed beforehand that if he asks he should be told how severe it is and what the prognosis is… the kindest possible way. He did ask and was understandably very shaken up and upset. How would you feel if you were told you only had a few weeks left to live? He asks if the children know and I say not yet, I need to get them all together and tell them at the same time and that won’t be until Saturday morning. I had a talk with the doctor this evening and she said that the Consultant at St.Luke's says there is not really any benefit in chemotherapy as it never works, in these cases, and just makes the patient's last few weeks miserable....and it probably is weeks, not even months. They are still (optimistically) talking about him coming home with help coming in several times a day or a care home or Phyllis Tuckwell Hospice, which is nearby to us. Of course, George will have a say in the matter as well.
Fri (day 12) For a couple of days now I had been asking if George could be given a shower and a shave as he was looking a little unkempt. Although the staff were very good they were also very busy so I specifically asked if George could have shave etc as his twin brother was coming tomorrow. (George confusedly says to me that he has been told he isn’t allowed to drive. I said we’ll see how things go and not to worry about it).
Sat (day 13) Peter came. George seemed pleased to see him. Peter was frustrated by George’s confused manner, no change there then. It’s really a matter now of deciding what to do next. As there is no treatment George probably shouldn’t be in the hospital. He can’t really come home as there is no way we could cope with the loss of bodily functions. If he had a fall there is no way we could help much. The intravenous drugs are now stopped and George is given painkillers for his back and anti-sickness drugs only.
Sun (day 14) The nurse on duty tell me that George was taken to the toilet early in the morning by the night staff and as the nurse went to get something, George tried to get up on his own and fell to the floor. Plenty of visitors still. George is sleeping a lot and watching TV a lot. Difficult to have much of a conversation.
Mon (day 15) 4 July 2011 George is getting more and more agitated about toilet arrangements. He can’t understand that he can’t get up and has to do it using the “in-bed” arrangements that have been made. The hospital notes say he has had another fall. Lucy got so frustrated today when trying to get her dad to order his food from the menu. Before she’d finished reading out each choice he’d forgotten the previous one. It has been decided that George should be moved to Phyllis Tuckwell Hospice as soon as possible. This is good news.
Tuesday (day 16) Arrangements have been made that George will be transferred to PT Hospice on Thursday morning. Lots of visitors still coming to see him and he definitely perks up when there are lots of people around. We clean his teeth and put in his eye drops before we leave every evening making sure that everything is to hand including his mobile phone which he can’t use as he can’t see the keypad properly.
Wed (day 17) last day in Frimley Park Hospital
George is sleeping a lot and I encourage him to watch his favourite programmes on the TV. He has no IV drugs attached which he is pleased about although his arms are quite bruised from previous needles
Thursday (day 18) 7 July 2011 George is moved to Phyllis Tuckwell Hospice in the morning. A difficult move which made him very tired and he slept for a lot of the day. He is in a pleasant room but I’m not sure whether he understands where he is or indeed why. We make his food choices for him and make sure someone is with him to feed him at mealtimes. Visiting is at anytime which is good and home is only a couple of miles away. We bring him magazines to look…..not that he can read but we show him the pictures..
Friday (day 19) The care that George received at Phyllis Tuckwell really was excellent. The nursing staff found it quite difficult to change George’s pyjamas as his range of movement was getting limited. He hates being shaved. He has a catheter inserted so there is no more anxiety over weeing. The staff on reception comment that he is the most popular patient at the hospice with so many visitors.
Sat (day 20) We had to make sure that George had food that didn’t need too much chewing as he was finding this very hard and not having much success. He didn’t really have much of an appetite but we felt we should encourage him to eat. Lucy brought him a Winnie the Pooh mug which he recognised.
Sun (day 21) 10 July 2011 George is moved to bigger room which makes it much easier to receive the large number of visitors that are coming to see him. He is really struggling to make any sort of conversation with anyone or to make anyone understand what he wants or doesn’t want. He is beginning to find swallowing difficult and it’s not really possible to brush his teeth for him any more. His chest is starting to sound congested so the doctor prescribes something to dry it up.
Mon (day 22)
We are still trying to remain cheerful around George. He sleeps a lot of the time and when he is awake he doesn’t appear comfortable always seeming to want something or wanting to say something but can’t. We take some photos…not that we want to remember him like this but I think we would have regretted not doing so. The nursing staff do all they can to make sure George is comfy and that we have everything we need. We are there from the morning to late at night…..making sure there is some one there at all times during the day.
Tuesday (day 23) When we arrive in the morning the nurses tell us that George can’t be given any more fluid as it is causing him to choke. I know then that there isn’t too much time left. We do all we can to make sure George is as comfortable as possible and we keep talking to him although he can’t answer. We can’t begin to understand or feel what he is going through.
Wednesday (day 24) It’s really just a matter of time now…..George’s breathing is becoming more laboured and noisy…..he’s not really awake much…’s getting torturous to watch and listen to him…..or imagine how he must be feeling…..but of course we can’t…..he is just suffering and has been for some time now.
Thursday (day 24) 14 July 2011 I know from the time I get there that this is likely to be his last day. The doctor has a word with me in private and she says much the same thing. He doesn’t seem aware of anyone in the room….no awareness of anything at all. George’s breathing is slow, noisy and intermittent. There are large gaps between some of his breaths. Present in the room are me, Lucy, George, Mum, Eric, Amy, Si, Peter and Jason. Midday comes and goes…..we are still waiting and waiting. Approaching 1.30pm George’s breathing is very harsh….getting slower….larger gaps between breaths….then at 1.35 he stops breathing….just stops….with his eyes still open. We hold his hands and cry…..and hold each other and cry. I close his eyes for him. After about five final minutes with him, I go to inform the nurse.

Sunday, 16 June 2013

Saturday, 15 June 2013

Father's Day approaches.....

As my own father died in 1998, Father's Day hasn't been of any great significance to me although the children had always bought their dad a present and we always took him out....generally for a meal. This didn't happen in 2011 as George (their dad) wasn't feeling too good and hadn't been for quite a few weeks now. We said we'd wait until he was feeling better and then take him out. Little did we know that this was to be George's last Father's Day.