Saturday, October 24, 2009
Saturday, October 17, 2009
Memorial and Preparation
Please go to "Pete's Place" blog for a run down on the memorial gathering on 15 October 2009. I thought it best to place everything on that blog site, rather than the Oesophageal Cancer site. The program and eulogy will also be published there shortly. Thanks - Leanne
Saturday, October 03, 2009
Memorial Service 15 October 2009
The Memorial Ceremony/Service/gathering is tentatively scheduled as follows:
Time: 2.30 - 4.30pm with afternoon tea provided in the last hour
Date: Thursday 15 October 2009
Venue:
Lakeview Ballroom
Tuggeranong Community Centre
Cowlishaw Street
Tuggeranong ACT
RSVP:
If possible to pgaras@gmail.com or my email address or by text or phone.
The community centre is next to the Library, with pay parking available across the road and adjacent to the centre.
I am just waiting to hear back from the centre about the availability of some equipment that I need and will advise if the venue or details change via this blog. If they do it will only be to move to another venue in Tuggeranong, but I am fairly sure this will not need to change.
If you wish to attend, you would be very welcome. An RSVP would be helpful so I can organise seating and catering, but is not essential for those of you who may not see this until late in the day or who are unsure if you can attend or not until the last moment.
Further updates, information and advice will continue to be posted on this blog or Pete's Place
blog.
Leanne
Thursday, October 01, 2009
Peter's Funeral on 22 September 2009
The funeral at Macquarie Park Cemetery in North Ryde, NSW was held at 12.30pm on an unseasonably hot, windy day for Spring. Peter hated the cold and hated Canberra in the winter with a mortal dread, so it is fitting that it was warm for his last day with us.
The Ohel Chaim chapel, in this huge cemetery, is a simple place and suitable to the dignified and restrained service which Rabbi Jacobson performed. There were no flowers, just the simple black coffin draped in a fringed, velvet cloth to the left of the seating, with the rabbi on the right.
Not everything can be controlled for, however, even at the last, and the sound of a mechanical digger working at some distance was annoying from time to time but I did not think it politic to rise in the middle of the service to close the doors.
The rabbi delivered the Eulogy I had written sincerely and movingly and I was glad he did not ask me to edit it down, because how do you fit a 60 year life into less than 20 minutes? I still know that it could, in no way, really do Peter justice. But I think he would have been pleased, although I have no doubts whatsoever, that he would have read through it and made a number of suggestions.
Some of Peter's friends/colleagues drove the 300 kilometres from Canberra and 3 longtime workmates, with whom Peter was close, came from the various Centrelink office or retirement to pay their respects. Also present, were people whom I had never met who formed part of Peter's early life in Sydney as well as a representative group of my nuclear and extended family. It was not a large group because the timing of the funeral was quite quick, in accordance with Jewish tradition, and most people with whom Peter had had contact over the past 15 years of our time in Canberra could not make the journey.
After the service, we walked the short distance of about 30 metres or so to the burial plot, where there were more prayers and words of comfort. Then 4 shovels were planted in the earth and we were invited to take a shovel, one at a time and place three spades of earth on the coffin. I was first and then others followed, as it is traditional that "we bury our own". Next, the rabbi invited me to step up onto the path near the grave with the other mourners adjacent to me in 2 parallel rows, so that I might "step off into a new life" and be greeted or comforted by the others present. I found these small traditions, which were new to me, to be exceptionally moving and meaningful.
Some of us gathered after the service to have coffee and cake at the cafe, although that is not traditional to do so in Jewish rites. But that evening, the rabbi also held a Minyan prayer meeting at Peter's only distant relatives' home which was attended by a small number of old friends, some of whom could not make the funeral. Peter had mentioned this in some notes he left me and so I was really glad the Rabbi was available for this quiet and moving service.
That night a wind storm blew up and the next morning Sydney was shrouded in a bright orange shroud of dust, the worst such storm for over 70 years according to meteorologists. Visibility was low, ferries on the harbour were cancelled, and the city remained under the influence of the yellowish/orange haze until it all blew out to sea later in the day. Thousands of millions of tonnes of red dust had blown from the red centre around Lake Eyre, over almost the entire eastern seaboard or Australia. I know that it is a long bow to mention this, but I can't help but feeling a degree of "old Testament" significance about the end of a 5,770 year history for Peter and his family, being marked with such a huge natural event!
Some people have asked that I publish the Eulogy and I will be happy to do so later this month on this blog site. I will continue to use the blog site to keep you informed, as I know many people have been used to seeing it, especially those overseas and for whom I don't have contact details.
I am working on the memorial service and venue at the moment and it is tentatively to be held on Thursday October 15th in Canberra, around 2 or 2.30pm, most probably in Tuggeranong, close to our home, with afternoon tea afterwards. Peter would have wanted a "good spread" so I hope those of you who are within driving distance can place this in your diaries. I will also text and email people for whom I have contact information.
I was very moved by the emails and cards that have been sent to me in recent days. Some I read left me weeping with great, fat tears falling onto my lap and wracking sobs that I found took some time to subside. I was also moved by a letter I received from Dr Yip and a phone call I received yesterday from Dr P about Peter. How many specialists do you know who would take the time to do such an immensely personal thing? It is a measure of their unique and special qualities and also, I think, the esteem in which they held Peter.
To all of you who have been in touch with phone calls, emails and cards, I thank you so very much and will get to reply to each of you individually in time. I am devastated, I am shattered, I am bereft. I sit here alone in Peter's study, writing this, surrounded by all the small markers of his life and I have to say, unlike Edith Piaf, I do have regrets and would have done some things differently had I known then what I know now.
I also miss, with an intense and deep physicality, the Peter who I know, is his "earthly shell". Because it was his hands that I held, his feet I massaged, his brow I kissed and his body that I held, protected and fought for in these last days and years. I know the essence of who he was is not there, but the anguish of knowing his body is interred is deep and final.
Please keep looking at this blog and his "Pete's Place" blog or contact me via email either on Peter's or my email address.
Many thanks
Leanne
The Ohel Chaim chapel, in this huge cemetery, is a simple place and suitable to the dignified and restrained service which Rabbi Jacobson performed. There were no flowers, just the simple black coffin draped in a fringed, velvet cloth to the left of the seating, with the rabbi on the right.
Not everything can be controlled for, however, even at the last, and the sound of a mechanical digger working at some distance was annoying from time to time but I did not think it politic to rise in the middle of the service to close the doors.
The rabbi delivered the Eulogy I had written sincerely and movingly and I was glad he did not ask me to edit it down, because how do you fit a 60 year life into less than 20 minutes? I still know that it could, in no way, really do Peter justice. But I think he would have been pleased, although I have no doubts whatsoever, that he would have read through it and made a number of suggestions.
Some of Peter's friends/colleagues drove the 300 kilometres from Canberra and 3 longtime workmates, with whom Peter was close, came from the various Centrelink office or retirement to pay their respects. Also present, were people whom I had never met who formed part of Peter's early life in Sydney as well as a representative group of my nuclear and extended family. It was not a large group because the timing of the funeral was quite quick, in accordance with Jewish tradition, and most people with whom Peter had had contact over the past 15 years of our time in Canberra could not make the journey.
After the service, we walked the short distance of about 30 metres or so to the burial plot, where there were more prayers and words of comfort. Then 4 shovels were planted in the earth and we were invited to take a shovel, one at a time and place three spades of earth on the coffin. I was first and then others followed, as it is traditional that "we bury our own". Next, the rabbi invited me to step up onto the path near the grave with the other mourners adjacent to me in 2 parallel rows, so that I might "step off into a new life" and be greeted or comforted by the others present. I found these small traditions, which were new to me, to be exceptionally moving and meaningful.
Some of us gathered after the service to have coffee and cake at the cafe, although that is not traditional to do so in Jewish rites. But that evening, the rabbi also held a Minyan prayer meeting at Peter's only distant relatives' home which was attended by a small number of old friends, some of whom could not make the funeral. Peter had mentioned this in some notes he left me and so I was really glad the Rabbi was available for this quiet and moving service.
That night a wind storm blew up and the next morning Sydney was shrouded in a bright orange shroud of dust, the worst such storm for over 70 years according to meteorologists. Visibility was low, ferries on the harbour were cancelled, and the city remained under the influence of the yellowish/orange haze until it all blew out to sea later in the day. Thousands of millions of tonnes of red dust had blown from the red centre around Lake Eyre, over almost the entire eastern seaboard or Australia. I know that it is a long bow to mention this, but I can't help but feeling a degree of "old Testament" significance about the end of a 5,770 year history for Peter and his family, being marked with such a huge natural event!
Some people have asked that I publish the Eulogy and I will be happy to do so later this month on this blog site. I will continue to use the blog site to keep you informed, as I know many people have been used to seeing it, especially those overseas and for whom I don't have contact details.
I am working on the memorial service and venue at the moment and it is tentatively to be held on Thursday October 15th in Canberra, around 2 or 2.30pm, most probably in Tuggeranong, close to our home, with afternoon tea afterwards. Peter would have wanted a "good spread" so I hope those of you who are within driving distance can place this in your diaries. I will also text and email people for whom I have contact information.
I was very moved by the emails and cards that have been sent to me in recent days. Some I read left me weeping with great, fat tears falling onto my lap and wracking sobs that I found took some time to subside. I was also moved by a letter I received from Dr Yip and a phone call I received yesterday from Dr P about Peter. How many specialists do you know who would take the time to do such an immensely personal thing? It is a measure of their unique and special qualities and also, I think, the esteem in which they held Peter.
To all of you who have been in touch with phone calls, emails and cards, I thank you so very much and will get to reply to each of you individually in time. I am devastated, I am shattered, I am bereft. I sit here alone in Peter's study, writing this, surrounded by all the small markers of his life and I have to say, unlike Edith Piaf, I do have regrets and would have done some things differently had I known then what I know now.
I also miss, with an intense and deep physicality, the Peter who I know, is his "earthly shell". Because it was his hands that I held, his feet I massaged, his brow I kissed and his body that I held, protected and fought for in these last days and years. I know the essence of who he was is not there, but the anguish of knowing his body is interred is deep and final.
Please keep looking at this blog and his "Pete's Place" blog or contact me via email either on Peter's or my email address.
Many thanks
Leanne
Sunday, September 20, 2009
Funeral Advice
Peter's funeral will be held at Macquarie Park Cemetery, Corner Delhi and Plassey Roads
North Ryde NSW on Tuesday 22 September 2009 commencing at 12.30pm.
I know that most of you reading this will not be able to attend, but for those of you who can do so, it would be wonderful to see you there. (This is the cemetery in which his parents are also buried.)
No flowers please, however, he would like to have found a cure for his cancer and often said that he thought within 5 years of his demise, there would be a breakthrough. So please feel free to make a donation to Cancer research.
I intend to hold a Memorial Service in Canberra in a few weeks and will advise of date and location in the blog and via email or SMS for those of you whose mobile numbers I have.
Leanne
North Ryde NSW on Tuesday 22 September 2009 commencing at 12.30pm.
I know that most of you reading this will not be able to attend, but for those of you who can do so, it would be wonderful to see you there. (This is the cemetery in which his parents are also buried.)
No flowers please, however, he would like to have found a cure for his cancer and often said that he thought within 5 years of his demise, there would be a breakthrough. So please feel free to make a donation to Cancer research.
I intend to hold a Memorial Service in Canberra in a few weeks and will advise of date and location in the blog and via email or SMS for those of you whose mobile numbers I have.
Leanne
Saturday, September 19, 2009
The Tragedy Ends and Garpet is No More
At sometime before 2.50am today, Saturday 19 September 2009, Peter died in his sleep at the Clare Holland House hospice.
He had a reasonable week, after a brilliant weekend (which I know he really tried hard to make good for me) with a few ups and downs, including needing to have his Peg feeding tube replaced on Thursday which required a trip in the ambulance to the Angiography suite at Calvary John James Hospital. He was stressed about the Peg tube simply falling out but having it replaced is something we have done before and I was able to provide the registrar at the hospice with their phone number and details so we had an emergency appointment and got it done without too much ado within a few hours.
Over the past couple of days I had noticed Peter looked a little more tired around the eyes and also had a bit more congestion than previously but I thought that if we could get his evening sleep to be more settled he would be in a better position to respond to the events during the day. To that end we were trialling Temazapam as a little helper for sleep.
However, we had an excellent game of Scrabble on Wednesday when he thrashed me by 100 points and he also did a personal best at walking on the spot of 250 steps in one session. We also enjoyed watching parts of Series 2 of "Hamish Macbeth" on DVD.
As a measure that Peter was still keen to keep on keeping on he told the ambulance men that he wanted to be resuscitated if something happened while he was en route to the hospital. On the other hand he was fearful of passing away at night and rang me at 2.40am on Friday morning finding it difficult to breathe. I spoke to one of the night nurses and asked her to provide some saline nebuliser and assistance to calm Peter and help him breathe, so Morphine was given but he passed an unsettled night and early morning.
On Friday he was a bit sleepy in the morning but at 11.30am he had 1 and 1/2 hours of lymphoedema drainage massage with the physiotherapist and me; he read his emails and had an hour long conversation with Dr P about trialling going home for a 48 hour period to see how we would go and Peter was concerned about how we would manage but thought we might trial some things in advance of doing that. I reinforced that I didn't want him to use up his strength doing something which he didn't want to do and if he was happy in the hospice then I would continue to do what was necessary and support him there. He said he felt he was getting a bit worse and Dr P said that the XRay taken last week showed that the right lung had, once again, "white out". Meaning that the lung was congested with infectious muck and that with my care he could have a few more months, but that the path was leading inexorably to a terminal end at some stage.
Peter was worried that he would die in the night over this weekend and that I should be with him during the night, which seems very prescient. On the other hand he had expressed this fear many time over the past 5 or so years and Dr P said he didn't look as if he would die imminently and after 10 or so hours at his side during the day I just had to plead that I needed to go home to my own bed so I could be refreshed the next day.
After that, we started another scrabble game before he had a bit more trouble breathing and needed to sit up and over the edge of the bed, so the scrabble was aborted - the last word he made was "fluid" - very relevant given he had started to retain fluid in the abdomen and legs since last Sunday evening.
We watched a few TV programs and I got him settled into bed with the help of the nursing staff by 7.45pm and kissed him goodnight.
At 10.15pm I got a call from the hospice saying Peter had had a bout of incontinence but they had cleaned him and settled him down again. However, he wanted me to know that they had taken off his TED long socks because they were soiled, so that when I came in tomorrow I would know what had happened. I was a bit perplexed about the incontinence and said that I hadn't taken him to the toilet before I left but perhaps having a full 10mg of Temazepam might had relaxed him so much he wasn't as in control of his bowels as before. However, they weren't concerned and I went to sleep. At a few minutes after 3am, I received a call and thought that it would be Peter calling as he had done the night before but it was the nurses to say they had given him midnight medications and then checked and talked with him at 1.30am but when they checked again at 2.50am he had passed away.
I know that the time around 2.30am to 3.30am was always crucial for Peter and he needed support, assistance to clear his chest and airways from phlegm and medication or some other comforting aid. Clearly this proved to be the case again this morning when it proved to be one time he didn't come through.
Dr P, as usual has been superb. He was contacted by the nurses a few minutes ahead of me and when I arrived around 4.00am he was there. He sat with me for a couple of hours and we talked of Peter. He told me that he had checked for any signs of asphyxia or choking and there were no signs. I asked whether it could have been his sleep apnoea just failing to breathe after a break and he said that was most likely; the death certificate, apparently, states lung failure as a result of complications of pneumonia and cancer, but I have yet to see it.
I spent 6 hours with Peter this morning and had 2 good friends come to be with me while I did so. I didn't want to leave Peter without some other friends being with me for my last visit with him. I held his left hand for hours and kept it warm in mine. I took photos of him (which some people will find weird). However, I want to remember his lovely hands and have the photos, not for display, but for my own private need to remember how he was when I last saw him. Too many false memories can be created after times of stress and I need to remember all of him and what he was like at the end. I think it so crucial to face the full effects of things head on and there is then no room for false memories or fantasies about what might have been.
Forty days and forty nights had elapsed since he was meant to have died following his intensive care stay. He also died on the sabbath and on Jewish New Year - a fitting time for Moshe Avraham ben Leev ha Cohen (Peter's Hebrew names), given that as a Cohen, he was of the priestly tribe. As all of you know, Peter was not religious and did not tell people of his birth religion because he said he wanted people to know him as he was and not as their perceptions or views might inform them of how they thought he should be. A wise view given the sometimes continuing prejudices colour modern society.
Peter will be buried at the Macquarie Park cemetery in North Ryde sometime next week.I will post details as and when I know them.
I salute you Peter! You have been the most vexing person in the known universe at times but also the most inspiring, frank and fearless, bright, intellectually uncompromising, challenging, stimulating, strategic and ethical person I have ever met. I was lucky you found me and we shared wonderful travel times together as well as some really close, deeply meaningful and loving moments over the years and during the course of this illness. "Vale" my loved one! You will never be forgotten while I have a breath left in me. I loved you and loved you and loved you and I know that you returned that love and we were precious to each other.
Leanne
He had a reasonable week, after a brilliant weekend (which I know he really tried hard to make good for me) with a few ups and downs, including needing to have his Peg feeding tube replaced on Thursday which required a trip in the ambulance to the Angiography suite at Calvary John James Hospital. He was stressed about the Peg tube simply falling out but having it replaced is something we have done before and I was able to provide the registrar at the hospice with their phone number and details so we had an emergency appointment and got it done without too much ado within a few hours.
Over the past couple of days I had noticed Peter looked a little more tired around the eyes and also had a bit more congestion than previously but I thought that if we could get his evening sleep to be more settled he would be in a better position to respond to the events during the day. To that end we were trialling Temazapam as a little helper for sleep.
However, we had an excellent game of Scrabble on Wednesday when he thrashed me by 100 points and he also did a personal best at walking on the spot of 250 steps in one session. We also enjoyed watching parts of Series 2 of "Hamish Macbeth" on DVD.
As a measure that Peter was still keen to keep on keeping on he told the ambulance men that he wanted to be resuscitated if something happened while he was en route to the hospital. On the other hand he was fearful of passing away at night and rang me at 2.40am on Friday morning finding it difficult to breathe. I spoke to one of the night nurses and asked her to provide some saline nebuliser and assistance to calm Peter and help him breathe, so Morphine was given but he passed an unsettled night and early morning.
On Friday he was a bit sleepy in the morning but at 11.30am he had 1 and 1/2 hours of lymphoedema drainage massage with the physiotherapist and me; he read his emails and had an hour long conversation with Dr P about trialling going home for a 48 hour period to see how we would go and Peter was concerned about how we would manage but thought we might trial some things in advance of doing that. I reinforced that I didn't want him to use up his strength doing something which he didn't want to do and if he was happy in the hospice then I would continue to do what was necessary and support him there. He said he felt he was getting a bit worse and Dr P said that the XRay taken last week showed that the right lung had, once again, "white out". Meaning that the lung was congested with infectious muck and that with my care he could have a few more months, but that the path was leading inexorably to a terminal end at some stage.
Peter was worried that he would die in the night over this weekend and that I should be with him during the night, which seems very prescient. On the other hand he had expressed this fear many time over the past 5 or so years and Dr P said he didn't look as if he would die imminently and after 10 or so hours at his side during the day I just had to plead that I needed to go home to my own bed so I could be refreshed the next day.
After that, we started another scrabble game before he had a bit more trouble breathing and needed to sit up and over the edge of the bed, so the scrabble was aborted - the last word he made was "fluid" - very relevant given he had started to retain fluid in the abdomen and legs since last Sunday evening.
We watched a few TV programs and I got him settled into bed with the help of the nursing staff by 7.45pm and kissed him goodnight.
At 10.15pm I got a call from the hospice saying Peter had had a bout of incontinence but they had cleaned him and settled him down again. However, he wanted me to know that they had taken off his TED long socks because they were soiled, so that when I came in tomorrow I would know what had happened. I was a bit perplexed about the incontinence and said that I hadn't taken him to the toilet before I left but perhaps having a full 10mg of Temazepam might had relaxed him so much he wasn't as in control of his bowels as before. However, they weren't concerned and I went to sleep. At a few minutes after 3am, I received a call and thought that it would be Peter calling as he had done the night before but it was the nurses to say they had given him midnight medications and then checked and talked with him at 1.30am but when they checked again at 2.50am he had passed away.
I know that the time around 2.30am to 3.30am was always crucial for Peter and he needed support, assistance to clear his chest and airways from phlegm and medication or some other comforting aid. Clearly this proved to be the case again this morning when it proved to be one time he didn't come through.
Dr P, as usual has been superb. He was contacted by the nurses a few minutes ahead of me and when I arrived around 4.00am he was there. He sat with me for a couple of hours and we talked of Peter. He told me that he had checked for any signs of asphyxia or choking and there were no signs. I asked whether it could have been his sleep apnoea just failing to breathe after a break and he said that was most likely; the death certificate, apparently, states lung failure as a result of complications of pneumonia and cancer, but I have yet to see it.
I spent 6 hours with Peter this morning and had 2 good friends come to be with me while I did so. I didn't want to leave Peter without some other friends being with me for my last visit with him. I held his left hand for hours and kept it warm in mine. I took photos of him (which some people will find weird). However, I want to remember his lovely hands and have the photos, not for display, but for my own private need to remember how he was when I last saw him. Too many false memories can be created after times of stress and I need to remember all of him and what he was like at the end. I think it so crucial to face the full effects of things head on and there is then no room for false memories or fantasies about what might have been.
Forty days and forty nights had elapsed since he was meant to have died following his intensive care stay. He also died on the sabbath and on Jewish New Year - a fitting time for Moshe Avraham ben Leev ha Cohen (Peter's Hebrew names), given that as a Cohen, he was of the priestly tribe. As all of you know, Peter was not religious and did not tell people of his birth religion because he said he wanted people to know him as he was and not as their perceptions or views might inform them of how they thought he should be. A wise view given the sometimes continuing prejudices colour modern society.
Peter will be buried at the Macquarie Park cemetery in North Ryde sometime next week.I will post details as and when I know them.
I salute you Peter! You have been the most vexing person in the known universe at times but also the most inspiring, frank and fearless, bright, intellectually uncompromising, challenging, stimulating, strategic and ethical person I have ever met. I was lucky you found me and we shared wonderful travel times together as well as some really close, deeply meaningful and loving moments over the years and during the course of this illness. "Vale" my loved one! You will never be forgotten while I have a breath left in me. I loved you and loved you and loved you and I know that you returned that love and we were precious to each other.
Leanne
Sunday, September 13, 2009
A quick update - Is life a Greek tragedy? Yes
Peter had a CT scan on Friday, as he wanted to see if there was any improvement in the cancer that was at the base of his throat following the treatment in June and July. Unfortunately the news was bad. While there was nothing to be said about the throat there are bone metastases in the spine at C7, T1 and T11 of the vertebrae with a high risk of spinal compression. I know that those of you with medical backgrounds will know immediately that this is very bad - as it means that as it progresses, every function below that level of the spine will cease to function. At C7 and T1 that means quadriplegia. At T11 that means paraplegia.
Peter and I are, of course, appalled at this possibility. It is and has been his worst nightmare for many years. It is also ironic as the last 3 days he has been so very much better. Getting dressed in clothing for the first time in 8 weeks, doing more exercises, being brighter and cheekier and engaged. His immediate response to the news as brought in by the Registrar was to get up and do more walking exercises. Once we had seen Dr P and talked over it more with him, Peter's immediate response was to get on with our game of Scrabble because thinking about it or talking about it were just too hard. That night, he dreamt he was well and healthy and when he woke he was unsure why I wasn't in bed with him and so he tried to find me. Which meant, unfortunately, trying to get out of bed and past the bed rails. This was not, as is sometimes characterised, "being out of it". He literally had some moments where he didn't realise he was ill and in the hospice. Of course, he came crashing back to reality when nurses tried to restrain him and dosed him with Morphine. So that when I arrived he was concerned he had done the wrong thing but he was only dreaming (having not had morphine beforehand). The tragedy of life is that dreams try to sort through and repair what is troubling us and in Peter's he was well again. The despair he felt when he realised he was, in fact, in his severely compromised health situation was heartbreaking to witness. I wept as he told me.
On a lighter note, he is still very much able to direct certain things. Yesterday was my birthday (one with a 0 at the end) and as usual I arrived at the hospice for a usual day nursing Peter. Some minutes later a cake and candles arrived that Peter had organised through the volunteers to purchase for me. He also had 2 nurses and a volunteer sing Happy Birthday to me. I cried at his thoughtfulness at such a time when he is so incapacitated!
Later 3 sets of other friends surprised me with a visit, edibles, cards, a fantastic bunch of flowers and some lovely gifts. So Peter was wheeled to the sliding door to the outside world so he could be a witness to our outdoor gathering with the first fabulous spring day we have had. I wish I had a magic wand to cure him, so that we could share things more actively again. His mental acuity is still very intact and when he is feeling reasonable, he is a delight to be with and share things with him.
I still hold out some hopes of bringing him home. Eight weeks in hospital and the hospice is taking its toll on both of us. It is not easy to be at other people's beck and call and unfortunately, there is no peace, privacy or free will in institutions, no matter where you are.
Leanne
Peter and I are, of course, appalled at this possibility. It is and has been his worst nightmare for many years. It is also ironic as the last 3 days he has been so very much better. Getting dressed in clothing for the first time in 8 weeks, doing more exercises, being brighter and cheekier and engaged. His immediate response to the news as brought in by the Registrar was to get up and do more walking exercises. Once we had seen Dr P and talked over it more with him, Peter's immediate response was to get on with our game of Scrabble because thinking about it or talking about it were just too hard. That night, he dreamt he was well and healthy and when he woke he was unsure why I wasn't in bed with him and so he tried to find me. Which meant, unfortunately, trying to get out of bed and past the bed rails. This was not, as is sometimes characterised, "being out of it". He literally had some moments where he didn't realise he was ill and in the hospice. Of course, he came crashing back to reality when nurses tried to restrain him and dosed him with Morphine. So that when I arrived he was concerned he had done the wrong thing but he was only dreaming (having not had morphine beforehand). The tragedy of life is that dreams try to sort through and repair what is troubling us and in Peter's he was well again. The despair he felt when he realised he was, in fact, in his severely compromised health situation was heartbreaking to witness. I wept as he told me.
On a lighter note, he is still very much able to direct certain things. Yesterday was my birthday (one with a 0 at the end) and as usual I arrived at the hospice for a usual day nursing Peter. Some minutes later a cake and candles arrived that Peter had organised through the volunteers to purchase for me. He also had 2 nurses and a volunteer sing Happy Birthday to me. I cried at his thoughtfulness at such a time when he is so incapacitated!
Later 3 sets of other friends surprised me with a visit, edibles, cards, a fantastic bunch of flowers and some lovely gifts. So Peter was wheeled to the sliding door to the outside world so he could be a witness to our outdoor gathering with the first fabulous spring day we have had. I wish I had a magic wand to cure him, so that we could share things more actively again. His mental acuity is still very intact and when he is feeling reasonable, he is a delight to be with and share things with him.
I still hold out some hopes of bringing him home. Eight weeks in hospital and the hospice is taking its toll on both of us. It is not easy to be at other people's beck and call and unfortunately, there is no peace, privacy or free will in institutions, no matter where you are.
Leanne
Sunday, September 06, 2009
This week has seen a few changes for Peter. First he is now on a more "elemental" liquid food to try to help with his tolerance of the food (to stop nausea) and also assist with improving liquid bowel motions (sorry for the detail here...). it has been gong since Friday and there seems to have a slight improvement in the first of these but no change so far with the second.
Also he has had blood in his urine this week and so the Heparin (blood thinner) has been ceased and that has fixed that but the side issue is that he has to exercise more as there is a risk of blood clotting from inactivity. This is not easy as I need to have another person and the nurses are so focused on medication and quick tasks that they are not really easily engaged in helping me with the exercises. So Peter and I have been doing them largely on our own, which is not ideal and this was shown to be so when he nearly fell the other day while using the forearm walker for balance and there was only me to hang onto him.
Peter asked for a blood test this week as he was concerned his electrolytes would be down given his diarrhoea. The results were that they were okay but he is pretty anaemic. So another blood test on Monday to monitor how that's going.
Peter remains anxious when I leave in the evenings and we have been trialling the use of anti-anxiety medication but these have not been successful as they knock him out and leave him with a "hang-over" for several hours afterwards which sees him unable to distinguish dreams from reality. So that remains an issue.
None the less, I am undertaking almost all of the daily care for Peter. I should say I want to do this as then I can check out his condition and keep a monitoring eye on everything as I am the one person, apart from Peter who is consistently around and can advocate on his behalf. This includes showering, exercising, chest physio to assist him to expectorate the phlegm, all other personal care and comfort tasks. I also do most of the drug administration. This saves the nurses time and I am also keen to do it so that Peter gets his full dose of medication. It is also because I seem to be almost the only person who knows how to use his peg tube properly, despite Peter or I providing assistance and advice when we are able to do so.
Apart from these daily issues, we are continuing to enjoy each other's company as well as the DVD's, Scrabble and visitors. We also remain exceptionally grateful for Dr P___ who has continued to keep Peter as his patient despite his role being patients in the other hospitals at the moment. He is great and is very patient and engaged with both Peter and I. Thank goodness he has "kept the faith" with our aims to get Peter home. I am hopeful this might be able to be achieved within the next 4 weeks.
Leanne
Also he has had blood in his urine this week and so the Heparin (blood thinner) has been ceased and that has fixed that but the side issue is that he has to exercise more as there is a risk of blood clotting from inactivity. This is not easy as I need to have another person and the nurses are so focused on medication and quick tasks that they are not really easily engaged in helping me with the exercises. So Peter and I have been doing them largely on our own, which is not ideal and this was shown to be so when he nearly fell the other day while using the forearm walker for balance and there was only me to hang onto him.
Peter asked for a blood test this week as he was concerned his electrolytes would be down given his diarrhoea. The results were that they were okay but he is pretty anaemic. So another blood test on Monday to monitor how that's going.
Peter remains anxious when I leave in the evenings and we have been trialling the use of anti-anxiety medication but these have not been successful as they knock him out and leave him with a "hang-over" for several hours afterwards which sees him unable to distinguish dreams from reality. So that remains an issue.
None the less, I am undertaking almost all of the daily care for Peter. I should say I want to do this as then I can check out his condition and keep a monitoring eye on everything as I am the one person, apart from Peter who is consistently around and can advocate on his behalf. This includes showering, exercising, chest physio to assist him to expectorate the phlegm, all other personal care and comfort tasks. I also do most of the drug administration. This saves the nurses time and I am also keen to do it so that Peter gets his full dose of medication. It is also because I seem to be almost the only person who knows how to use his peg tube properly, despite Peter or I providing assistance and advice when we are able to do so.
Apart from these daily issues, we are continuing to enjoy each other's company as well as the DVD's, Scrabble and visitors. We also remain exceptionally grateful for Dr P___ who has continued to keep Peter as his patient despite his role being patients in the other hospitals at the moment. He is great and is very patient and engaged with both Peter and I. Thank goodness he has "kept the faith" with our aims to get Peter home. I am hopeful this might be able to be achieved within the next 4 weeks.
Leanne
Monday, August 31, 2009
More than 40 days and 40 nights
It is now 6 weeks to the day since I took Peter into the Nat Cap Private Hospital and he was admitted to the Intensive Care unit. It is also 4 weeks and 1 day since the Intensivists said it was all going to be over for Peter within a week and they withdrew the hydration and nutrition.
In that 4 week time period (since 2 August) he has made some good progress and I was thinking about some of the "gains" he has made in that time due, primarily, to food, ongoing medication (Antibiotics in the main) hydration, not to mention support and care of course:
1) Bed sores are healing
2) Sputum now has no sign of Pseudomonas bacteria
3) Peter is able to raise himself from the bed and get onto his feet without assistance
4) He is able to speak more than 1 word without taking a breath (in fact several at a time now)
5) He is now down from 14 litres of oxygen to 8 litres
6) He is sitting up in a deluxe chair with air pillows for around 6 or more hours per day
7) He is able to walk on the spot for 40 steps using a "forearm walker"
8) He looks better
9) He is engaged with me and visitors when he is feeling rested and okay.
On the opposite end of the spectrum he still has issues with the food intake and outflow - we need to get that balance right; he needs to build up strength and his capacity to take a few steps; I am unsure whether he will be able to do without the oxygen altogether anymore; I am unsure whether he would go downhill again if the antibiotics were withdrawn.
But I can say he is still as alert as ever when he has had sleep, is still a very good Scrabble adversary and his repartee has not lost its accuracy or barb. We are enjoying various movies on DVD and BBC series or dramas and he likes visitors when he is up to it.
I am okay but remain feeling tired at times. I enjoy doing things for and with Peter and being with him for the 10 - 12 hours a day but it can be "full-on".
Message for today: Enjoy the small things - the ordinariness of an independent life, breathing without assistance, independence, privacy, dignity, control over your body and the capacity to do all these things without even having to think or ask someone else's permission. Because illness and being cared for can rob you of some, if not all, of these.
Leanne
In that 4 week time period (since 2 August) he has made some good progress and I was thinking about some of the "gains" he has made in that time due, primarily, to food, ongoing medication (Antibiotics in the main) hydration, not to mention support and care of course:
1) Bed sores are healing
2) Sputum now has no sign of Pseudomonas bacteria
3) Peter is able to raise himself from the bed and get onto his feet without assistance
4) He is able to speak more than 1 word without taking a breath (in fact several at a time now)
5) He is now down from 14 litres of oxygen to 8 litres
6) He is sitting up in a deluxe chair with air pillows for around 6 or more hours per day
7) He is able to walk on the spot for 40 steps using a "forearm walker"
8) He looks better
9) He is engaged with me and visitors when he is feeling rested and okay.
On the opposite end of the spectrum he still has issues with the food intake and outflow - we need to get that balance right; he needs to build up strength and his capacity to take a few steps; I am unsure whether he will be able to do without the oxygen altogether anymore; I am unsure whether he would go downhill again if the antibiotics were withdrawn.
But I can say he is still as alert as ever when he has had sleep, is still a very good Scrabble adversary and his repartee has not lost its accuracy or barb. We are enjoying various movies on DVD and BBC series or dramas and he likes visitors when he is up to it.
I am okay but remain feeling tired at times. I enjoy doing things for and with Peter and being with him for the 10 - 12 hours a day but it can be "full-on".
Message for today: Enjoy the small things - the ordinariness of an independent life, breathing without assistance, independence, privacy, dignity, control over your body and the capacity to do all these things without even having to think or ask someone else's permission. Because illness and being cared for can rob you of some, if not all, of these.
Leanne
Wednesday, August 26, 2009
Not much to report
Peter had a few really good days (over the weekend) which were a lot to do with getting more sleep. However, the last couple of days he has had less sleep and is feeling more exhausted as a result. He has also developed some nausea which is proving difficult to ease and this, coupled with the need to cough up phlegm "plugs", means he has been draining energy reserves and finding it difficult to recover. I am hopeful that he might have got some more sleep last night but he says he is "scared stiff" at night and as he has only 1 functional hand, he is in difficulty often at night because he needs 3 hands to help him hold a sputum bowl, wipe his mouth and hold his oxygen mask. Unfortunately the night staff are busy and don't offer Peter the kind of support he needs so he has escalating stress at night.
I spent the early hours of Saturday morning with him after he called me at 1.40am. It was a long day - 12 hours through Friday, then 3 hours sleep and then another 11 hours, before going home on Saturday afternoon for a couple of hours sleep and returning for another 3 hours until a volunteer could arrive to be with him overnight.
Meanwhile we continue to work on his feeds with the nutritionist, who is a joy to work with; and today, if Peter is up to it, he has asked the physio if he could take some steps using the "Forearm" walker and 3 people to assist so he can do more than walk on the spot. We have to be careful as his calf muscles have shrunk away and so he needs to be supported and gradually built back up if that is at all possible.
Doctors still think this is a gradual downward path. I remain "pragmatically optimistic" about daily gains and hope I can get Peter home in some weeks.
Leanne
I spent the early hours of Saturday morning with him after he called me at 1.40am. It was a long day - 12 hours through Friday, then 3 hours sleep and then another 11 hours, before going home on Saturday afternoon for a couple of hours sleep and returning for another 3 hours until a volunteer could arrive to be with him overnight.
Meanwhile we continue to work on his feeds with the nutritionist, who is a joy to work with; and today, if Peter is up to it, he has asked the physio if he could take some steps using the "Forearm" walker and 3 people to assist so he can do more than walk on the spot. We have to be careful as his calf muscles have shrunk away and so he needs to be supported and gradually built back up if that is at all possible.
Doctors still think this is a gradual downward path. I remain "pragmatically optimistic" about daily gains and hope I can get Peter home in some weeks.
Leanne
Thursday, August 20, 2009
"Plateaued"
Peter has reached a plateau according to the specialist, Dr P., which I think means the medico's still think he is on the way out. But I have to say I think he is doing well at very small improvements every few days, but I suppose doctors are more objective and less close on a day by day basis. However, the infection in the Peg tube seems to have cleared up according to the latest swabs, the skin has healed around the Peg site and so that is one less issue with which we have to deal. And to me those small things just make life that much easier or more difficult depending on which way they are going and also make Peter more or less depressed.
Peter is also breathing more clearly and has less phlegm to bring up and he has been able to stand without assistance from the bed and do a few dozen "walking on the spot" exercises. All huge leaps of positive progress as far as I am concerned. I know this is due to the continuation of fluids, food and most crucially, the antibiotics which are holding everything (infection-wise) in check. I am hoping that they continue to do so, to allow Peter to get on top of the infection.
On the other hand, he is more anxious and distressed when I leave in the evening and has had to have some anti-anxiety medication. Sometimes I get phone calls after I have come home in the evening, which has necessitated me ringing the staff on his behalf, which I am sure is not something they are too thrilled about especially when busy.
We have not been playing too much scrabble lately as peter has been sleeping a fair bit when he has done his exercises. I have started to find his strategies also work for me and I think that Peter doesn't enjoy losing to me on rare occasions (but then I hate losing too).
Physios and Nutritionist continue to be super helpful and very positive about Peter's progress. He is tolerating the liquid food but is still having "clinical diarrhoea" which the nutritionist is now treating with Hi Maize, a starchy fibre supplement which looks like corn flour and apparently is good for easing those symptoms. I hope in a couple of days the diarrhoea will be a thing of the past.
I am getting a bit worn down by the relentlessness of each day by the bedside, but the few hours at home each night are an island of bliss in the sea of stress.
Leanne
Peter is also breathing more clearly and has less phlegm to bring up and he has been able to stand without assistance from the bed and do a few dozen "walking on the spot" exercises. All huge leaps of positive progress as far as I am concerned. I know this is due to the continuation of fluids, food and most crucially, the antibiotics which are holding everything (infection-wise) in check. I am hoping that they continue to do so, to allow Peter to get on top of the infection.
On the other hand, he is more anxious and distressed when I leave in the evening and has had to have some anti-anxiety medication. Sometimes I get phone calls after I have come home in the evening, which has necessitated me ringing the staff on his behalf, which I am sure is not something they are too thrilled about especially when busy.
We have not been playing too much scrabble lately as peter has been sleeping a fair bit when he has done his exercises. I have started to find his strategies also work for me and I think that Peter doesn't enjoy losing to me on rare occasions (but then I hate losing too).
Physios and Nutritionist continue to be super helpful and very positive about Peter's progress. He is tolerating the liquid food but is still having "clinical diarrhoea" which the nutritionist is now treating with Hi Maize, a starchy fibre supplement which looks like corn flour and apparently is good for easing those symptoms. I hope in a couple of days the diarrhoea will be a thing of the past.
I am getting a bit worn down by the relentlessness of each day by the bedside, but the few hours at home each night are an island of bliss in the sea of stress.
Leanne
Friday, August 14, 2009
Stable and making a little progress
Peter has seen the dietitian and she has confirmed our understanding that he should be on full strength liquid food and have it gradually introduced with ever increasing amounts if he tolerates it, so that he gets back to a normal amount of calories and protein. So now the watering down of his food and the 30% amount regime has been changed, fibre increased and a review will occur on Monday to see how it's been tolerated. Dr P said he was happy to take advice on that as he wasn't an expert in nutrition and was willing to learn. So that's very positive. Thank goodness for skilled allied health staff.
Peter has been able to stand up from the bed with assistance (often not requiring it but having it there in case he has a moment of weakness). He is also relieved to be able to be wheeled to the toilet a couple of times a day. He has also been assiduous in doing his leg exercises in bed and feel the benefit of them already although his calf muscles are incredibly reduced in size and strength after the 3 weeks in bed. Again, many thanks to the physiotherapists who have been helping us with that.
He is still very tired much of the time, especially after exertion but I can see colour returning to his cheeks and Dr P said yesterday how much better he is looking and that clearly I should keep doing what I have been doing because it is working. I don't know whether Peter will be able to come home, but it remains our aim and perhaps in a week or two he will have gathered more reserves of strength from the full strength food to be able to build up his strength. He is still needing to bring up the sputum which is infecting his lungs and get on top of that if at all possible. I am hoping his system can recover from this terrible illness. Whether it can or not, time will tell.
Will keep you posted as and when I can.
Leanne
Peter has been able to stand up from the bed with assistance (often not requiring it but having it there in case he has a moment of weakness). He is also relieved to be able to be wheeled to the toilet a couple of times a day. He has also been assiduous in doing his leg exercises in bed and feel the benefit of them already although his calf muscles are incredibly reduced in size and strength after the 3 weeks in bed. Again, many thanks to the physiotherapists who have been helping us with that.
He is still very tired much of the time, especially after exertion but I can see colour returning to his cheeks and Dr P said yesterday how much better he is looking and that clearly I should keep doing what I have been doing because it is working. I don't know whether Peter will be able to come home, but it remains our aim and perhaps in a week or two he will have gathered more reserves of strength from the full strength food to be able to build up his strength. He is still needing to bring up the sputum which is infecting his lungs and get on top of that if at all possible. I am hoping his system can recover from this terrible illness. Whether it can or not, time will tell.
Will keep you posted as and when I can.
Leanne
Monday, August 10, 2009
Some positives
On the weekend I asked if Peter could be assisted to stand out of bed to see if it was a possibility. This caused some concern that I was seeking to ask Peter to do things he couldn't do any more. After consultation with the weekend doctor, I was assisted to do so on Saturday after lunch. Peter was unsure whether he could stand or not but he did it with very little assistance even though he has lost a lot of his calf muscles because of being in bed.
As the next step, I asked that if he succeeded with that milestone, he be placed in the commode chair and wheeled to the toilet so he didn't have to be toileted in bed - a very distressing situation for Peter. He managed this well and was relieved to be able to do so. The next thing I asked was that he have a shower if possible (sitting on the commode chair in the shower) . He managed this well and really enjoyed having his first shower in 20 days. Afterwards he looked better and felt better but was advised that perhaps he should only do that every 2nd day.
We were also told that if he wanted to get out of bed and should happen to fall then no one would catch him because nurses are not covered for injuries sustained in this way. This frightened Peter a great deal. So I said that while ever I was there and he wanted to get up I would support him physically and if he should want to get up to the toilet when I wasn't there then he should ask for the lifting machine or a bedpan and as a last resort, the adult incontinence pad.
We were also told that if he wanted more active treatment then he would need to go to a hospital. I am keen for him to be able to stand and walk 4 steps so I can take him home if at all possible. I know this might not be possible, but we would both want to be able to do so if we could.
Yesterday, Sunday, he asked to go to the toilet in the same manner and also asked for another shower and hair-wash, which he accomplished well. An hour or so later he asked if he could get up into a chair and a deluxe chair was provided which has air cells in the seat to support but not add to pressure problems. It was a real pleasure for Peter to have a different outlook through the sliding doors and to be able to be out of the bed. He said he didn't want to be bedridden.
He sat in the chair for 3 hours, played scrabble (and beat me YET AGAIN!) and had a visitor before asking to go back to bed. That was 2 hours longer than anticipated. Also he got up successfully again about an hour later for another toilet stop. As he said "I'm not aware that lying in your own mess is considered a beauty product for the skin!"
I have just received an SMS from Peter now (8.44am) asking when I cam coming in as he is waiting on me to have another shower. So he is still with us and very engaged.
We understand from the weekend doctor that perhaps all we can hope for is a suppression of the pneumonia with antibiotics and that this may still kill Peter and we don't know how long that might be. However, as Peter has expressed very clearly: "While I am alert and compus mentus I want to keep living."
So on that basis I have asked the physiotherapist to come to see him to help with his leg strength and standing stability, as well as what we can do to keep up the drainage of the fluid on his immobile right arm while trying to avoid the pressure area on his elbow getting worse; also to keep up the clearing of his chest - the most important thing of all. Also I hope the nutritionist can visit today so we can adjust his feeds to allow for his condition and the fact he wasn't on enteral feeds for 2 and a half weeks.
So, in Peter's current situation, I am reminded of the famous Monty Python "Plague" skit : "I'm not dead yet......" and what a wonderful thing that is.
Motto for this week: Don't ever give up and don't take everything someone else tells you as read!
As the next step, I asked that if he succeeded with that milestone, he be placed in the commode chair and wheeled to the toilet so he didn't have to be toileted in bed - a very distressing situation for Peter. He managed this well and was relieved to be able to do so. The next thing I asked was that he have a shower if possible (sitting on the commode chair in the shower) . He managed this well and really enjoyed having his first shower in 20 days. Afterwards he looked better and felt better but was advised that perhaps he should only do that every 2nd day.
We were also told that if he wanted to get out of bed and should happen to fall then no one would catch him because nurses are not covered for injuries sustained in this way. This frightened Peter a great deal. So I said that while ever I was there and he wanted to get up I would support him physically and if he should want to get up to the toilet when I wasn't there then he should ask for the lifting machine or a bedpan and as a last resort, the adult incontinence pad.
We were also told that if he wanted more active treatment then he would need to go to a hospital. I am keen for him to be able to stand and walk 4 steps so I can take him home if at all possible. I know this might not be possible, but we would both want to be able to do so if we could.
Yesterday, Sunday, he asked to go to the toilet in the same manner and also asked for another shower and hair-wash, which he accomplished well. An hour or so later he asked if he could get up into a chair and a deluxe chair was provided which has air cells in the seat to support but not add to pressure problems. It was a real pleasure for Peter to have a different outlook through the sliding doors and to be able to be out of the bed. He said he didn't want to be bedridden.
He sat in the chair for 3 hours, played scrabble (and beat me YET AGAIN!) and had a visitor before asking to go back to bed. That was 2 hours longer than anticipated. Also he got up successfully again about an hour later for another toilet stop. As he said "I'm not aware that lying in your own mess is considered a beauty product for the skin!"
I have just received an SMS from Peter now (8.44am) asking when I cam coming in as he is waiting on me to have another shower. So he is still with us and very engaged.
We understand from the weekend doctor that perhaps all we can hope for is a suppression of the pneumonia with antibiotics and that this may still kill Peter and we don't know how long that might be. However, as Peter has expressed very clearly: "While I am alert and compus mentus I want to keep living."
So on that basis I have asked the physiotherapist to come to see him to help with his leg strength and standing stability, as well as what we can do to keep up the drainage of the fluid on his immobile right arm while trying to avoid the pressure area on his elbow getting worse; also to keep up the clearing of his chest - the most important thing of all. Also I hope the nutritionist can visit today so we can adjust his feeds to allow for his condition and the fact he wasn't on enteral feeds for 2 and a half weeks.
So, in Peter's current situation, I am reminded of the famous Monty Python "Plague" skit : "I'm not dead yet......" and what a wonderful thing that is.
Motto for this week: Don't ever give up and don't take everything someone else tells you as read!
Thursday, August 06, 2009
In Situ at the Hospice
Peter is now in Clare Holland House. He has a lovely room and it is large enough for a sofa bed so I can stay if needed. Although I find that the 11 or so hours a day I am there is very full on and it is a good break to drive home and crawl into my own bed.
There are still a few glitches with Peter's care and with the staff understanding what his frustrations and anxieties are. Mostly Peter gets angry when people can't hear him or don't do things he needs when he needs them. This is because he can't help himself, can't get out of bed now, can't get a glass of water to rinse out his parched mouth, can't sometimes reach the call button if it hasn't been put in his reach and can't call for help because his the oxygen dries him out so much he can only whisper until he has a reviving rinse with water. There is also a difference between his anxiety and frustration about these care related items and the overall possible end stage palliative care issues. Yesterday, it was interpreted that he was in respiratory distress so some Valium-type drug was given and he slept for 3 hours. But he woke wondering why he had been asleep and where the 3 hours had gone. He says he doesn't need that kind if intervention unless he asks for it, which he has done in the past in the hospital, and that all he was, was frustrated and angry.
Anyway, my mother is here with me now and she said the moment I walked in the door and he told me about his issues, and I said I would sort them our, Peter visibly relaxed and let go with relief. I certainly spend most of my time with Peter letting the shifts of staff know about how Peter likes to be cared for, what his history is, what he wants, doing chest physio and arm work to reduce the swelling in his immobile right arm, doing mouth and nose care, sorting out medications (trying to ensure he gets what he needs from both the ongoing drugs he was used to at home and the newer ones he has had in hospital) as well as his oxygen flows etc. It's more than a full time job and I do end up very tired at the end of the day (around 8 or 8.30pm).
We have seen Dr P a few times. Peter still believes that there is a chance he can recover and he has said so to me and to the evening nurse. Yesterday he continues to try to clear his lungs, do the chest physio, lying on his side to give his pressure sores a rest as well as drain his right lung. He was also allowed to return to his liquid food through the Peg site on the proviso that it didn't cause fluid overload in his lungs etc. I was so relieved at that and we were able to start it again on Tuesday night as I had brought a supply and the pump with me. I am concerned about his kidneys and hope that they can keep going.
I know the hospice staff think that I have unrealistic expectations of the chance of a recovery and that Peter and I are kidding ourselves if we think he will get over this illness. But I cannot sit by and do nothing while he continues to have confidence in me and looks to me for the relief of his situation. While ever he remains as totally switched on as he is and continues to ask me for help I will do everything in my power to assist him. And if there is a slim chance of recovery and we get it, then I will be so relieved and Peter will feel vindicated about never giving up, as he has come back from pneumonia and infections before.
We both know there is always the cancer or the next illness and we will probably be equally unprepared to give up on him at that point, if we have another chance. But when you love someone and can actually assist to help improve their comfort, reduce their anxiety and advocate on their behalf, then, for me, there is absolutely no other path than to continue to do so while ever there is a tiny hope and Peter wants me to do so, which he does.
Thanks for the emails, phone calls, flowers and visits. All very appreciated. Sorry if I haven't responded to you personally, but I feel sure you understand.
Leanne
There are still a few glitches with Peter's care and with the staff understanding what his frustrations and anxieties are. Mostly Peter gets angry when people can't hear him or don't do things he needs when he needs them. This is because he can't help himself, can't get out of bed now, can't get a glass of water to rinse out his parched mouth, can't sometimes reach the call button if it hasn't been put in his reach and can't call for help because his the oxygen dries him out so much he can only whisper until he has a reviving rinse with water. There is also a difference between his anxiety and frustration about these care related items and the overall possible end stage palliative care issues. Yesterday, it was interpreted that he was in respiratory distress so some Valium-type drug was given and he slept for 3 hours. But he woke wondering why he had been asleep and where the 3 hours had gone. He says he doesn't need that kind if intervention unless he asks for it, which he has done in the past in the hospital, and that all he was, was frustrated and angry.
Anyway, my mother is here with me now and she said the moment I walked in the door and he told me about his issues, and I said I would sort them our, Peter visibly relaxed and let go with relief. I certainly spend most of my time with Peter letting the shifts of staff know about how Peter likes to be cared for, what his history is, what he wants, doing chest physio and arm work to reduce the swelling in his immobile right arm, doing mouth and nose care, sorting out medications (trying to ensure he gets what he needs from both the ongoing drugs he was used to at home and the newer ones he has had in hospital) as well as his oxygen flows etc. It's more than a full time job and I do end up very tired at the end of the day (around 8 or 8.30pm).
We have seen Dr P a few times. Peter still believes that there is a chance he can recover and he has said so to me and to the evening nurse. Yesterday he continues to try to clear his lungs, do the chest physio, lying on his side to give his pressure sores a rest as well as drain his right lung. He was also allowed to return to his liquid food through the Peg site on the proviso that it didn't cause fluid overload in his lungs etc. I was so relieved at that and we were able to start it again on Tuesday night as I had brought a supply and the pump with me. I am concerned about his kidneys and hope that they can keep going.
I know the hospice staff think that I have unrealistic expectations of the chance of a recovery and that Peter and I are kidding ourselves if we think he will get over this illness. But I cannot sit by and do nothing while he continues to have confidence in me and looks to me for the relief of his situation. While ever he remains as totally switched on as he is and continues to ask me for help I will do everything in my power to assist him. And if there is a slim chance of recovery and we get it, then I will be so relieved and Peter will feel vindicated about never giving up, as he has come back from pneumonia and infections before.
We both know there is always the cancer or the next illness and we will probably be equally unprepared to give up on him at that point, if we have another chance. But when you love someone and can actually assist to help improve their comfort, reduce their anxiety and advocate on their behalf, then, for me, there is absolutely no other path than to continue to do so while ever there is a tiny hope and Peter wants me to do so, which he does.
Thanks for the emails, phone calls, flowers and visits. All very appreciated. Sorry if I haven't responded to you personally, but I feel sure you understand.
Leanne
Tuesday, August 04, 2009
Moving to Hospice
Yesterday we were able to see Dr P___ the very excellent palliative care specialist whom Peter has been seeing for over 18 months and who knows him very well. Peter trusts him absolutely and he has shown himself to be, time and again, the very best doctor we have encountered. His knowledge is huge, his capacity to patiently explain things is boundless and his compassion, friendliness and support has been second to none.
Peter's first question was "Can I fight this and recover or is it going to be the end?" Dr P said there was a very slender possibility that Peter could recover from the pneumonia but that the likelihood was that this would be his terminal illness.
I asked whether he could be saved if he showed signs of improvement and DR P said yes, which was a relief to me that the course of action could be changed if there was that miracle.
Peter said: "You said a long time ago that if the time came you could help me by making things painless, panic and anxiety free and you could keep my airways clear so I wouldn't suffocate or choke. Can you do that for me"" Dr P said that if that was what he wanted then it was not only Peter's right to have that care but it would be Dr P's personal honour to assist him to do so. peter said he didn't want to die but if he had to then he wanted to "drift off" as if gently going to sleep.
Dr P said he could do that and more to help Peter and that the best thing was for him to be moved to the hospice where he, Dr P, would also be on duty for the next 2 weeks. Suddenly we both felt marginally better. Me, because the struggle with the Intensivists to keep Peter going and to see him as more than just his illnesses on paper has been taken over by an excellent and caring doctor who will do whatever he can; and Peter because I think he trusts Dr P implicitly. Peter said to me after his first meeting with Dr P early in 2008 "If his is the last face I ever see, I will be happy". At the time I thought: "That's a relief to finally find a doctor who is so good and caring and will be here if we come to that point". I am so glad that Dr P has just come back from leave yesterday and so should be able to be with us throughout this period.
So Peter will be moving to Clare Holland House after 9am today sometime, having medications through the Peg tube again and I hope that he can be kept hydrated enough with that, despite the leakage problems we have been experiencing. I am going to ask Dr P if we can introduce some of Peter's liquid food again, even tiny amounts, as I am physically ill to think that he may end up dehydrated and starved, as I want to grab that slim chance that we can revive him. I know that there is still the cancer to answer to but this may have a tiny chance to be beaten and I want to do every single thing in my power to grab it if it comes within reach.
Will update again as soon as I can.
Leanne
Peter's first question was "Can I fight this and recover or is it going to be the end?" Dr P said there was a very slender possibility that Peter could recover from the pneumonia but that the likelihood was that this would be his terminal illness.
I asked whether he could be saved if he showed signs of improvement and DR P said yes, which was a relief to me that the course of action could be changed if there was that miracle.
Peter said: "You said a long time ago that if the time came you could help me by making things painless, panic and anxiety free and you could keep my airways clear so I wouldn't suffocate or choke. Can you do that for me"" Dr P said that if that was what he wanted then it was not only Peter's right to have that care but it would be Dr P's personal honour to assist him to do so. peter said he didn't want to die but if he had to then he wanted to "drift off" as if gently going to sleep.
Dr P said he could do that and more to help Peter and that the best thing was for him to be moved to the hospice where he, Dr P, would also be on duty for the next 2 weeks. Suddenly we both felt marginally better. Me, because the struggle with the Intensivists to keep Peter going and to see him as more than just his illnesses on paper has been taken over by an excellent and caring doctor who will do whatever he can; and Peter because I think he trusts Dr P implicitly. Peter said to me after his first meeting with Dr P early in 2008 "If his is the last face I ever see, I will be happy". At the time I thought: "That's a relief to finally find a doctor who is so good and caring and will be here if we come to that point". I am so glad that Dr P has just come back from leave yesterday and so should be able to be with us throughout this period.
So Peter will be moving to Clare Holland House after 9am today sometime, having medications through the Peg tube again and I hope that he can be kept hydrated enough with that, despite the leakage problems we have been experiencing. I am going to ask Dr P if we can introduce some of Peter's liquid food again, even tiny amounts, as I am physically ill to think that he may end up dehydrated and starved, as I want to grab that slim chance that we can revive him. I know that there is still the cancer to answer to but this may have a tiny chance to be beaten and I want to do every single thing in my power to grab it if it comes within reach.
Will update again as soon as I can.
Leanne
Sunday, August 02, 2009
Bad News
Peter has come towards the end of his journey and I weep while writing this at his hospital chair side. Today the Intensivist said that while he has made some progress that he hasn't improved as much as they had hoped and that he is getting weaker.
We have had a very harrowing discussion - Peter, the Intensivist(a good one who has been on for the last 4 days and has taken a lot of time to talk with us) and I - I can't see why they can't keep actively treating him but the doctor says that she can see he is battling but not winning.
Peter is so tired, he says he just wants to drift away as painlessly and comfortably as possible now. I have found this too difficult to bear as he has come through other fights!! I know how he has shown them before that they were wrong but he seems to have lost his strength now. He said this morning: "I feel like I have come to the end of my rope". He is also getting more anxious and distressed, and so Valium and morphine are being used in small regular doses to help as I think it is all too much for him - he is very scared. Soon they will end his intravenous feeding and revert to fluids only (glucose and water intravenously).
This weekend is our 16th anniversary of being together. Today is our 4-week anniversary of being married.
They say he may only last a few more days, maybe not through to this time next week. I have tried so hard to keep him with me over the past 5 and 1/2 years and nothing I do now seems to be able to convince the doctors, and now Peter, that there is hope still. They are telling me there is none and that Pseudonmonas pneumonia is very life threatening and with his cancer and the chemotherapy the risk factors are even higher.
It is 2.07pm Sunday 2 August and they have just switched off his food intravenously and are now putting up the glucose fluids. He is still on one antibiotic. This is the beginning of the end I think. He is awake but a little groggy. I have been holding his hand. Nothing more to say right now. Don't want him to go. Am frightened for him and he is scared too. This is one of the worst days we have ever had to face.
Leanne
We have had a very harrowing discussion - Peter, the Intensivist(a good one who has been on for the last 4 days and has taken a lot of time to talk with us) and I - I can't see why they can't keep actively treating him but the doctor says that she can see he is battling but not winning.
Peter is so tired, he says he just wants to drift away as painlessly and comfortably as possible now. I have found this too difficult to bear as he has come through other fights!! I know how he has shown them before that they were wrong but he seems to have lost his strength now. He said this morning: "I feel like I have come to the end of my rope". He is also getting more anxious and distressed, and so Valium and morphine are being used in small regular doses to help as I think it is all too much for him - he is very scared. Soon they will end his intravenous feeding and revert to fluids only (glucose and water intravenously).
This weekend is our 16th anniversary of being together. Today is our 4-week anniversary of being married.
They say he may only last a few more days, maybe not through to this time next week. I have tried so hard to keep him with me over the past 5 and 1/2 years and nothing I do now seems to be able to convince the doctors, and now Peter, that there is hope still. They are telling me there is none and that Pseudonmonas pneumonia is very life threatening and with his cancer and the chemotherapy the risk factors are even higher.
It is 2.07pm Sunday 2 August and they have just switched off his food intravenously and are now putting up the glucose fluids. He is still on one antibiotic. This is the beginning of the end I think. He is awake but a little groggy. I have been holding his hand. Nothing more to say right now. Don't want him to go. Am frightened for him and he is scared too. This is one of the worst days we have ever had to face.
Leanne
Saturday, August 01, 2009
Some Positive Progress
Yesterday (Friday 31 July) Peter was able to fit in his full exercise plan by getting the nurses to start him early (6am) and then have the physio take over during the day and the last one of the day with me and 1 nurse. This involves getting the electric recliner chair to stand him up and then he walks on the spot for 25 steps and takes 3 deep breaths, with a rest in between each of these things. After each of the 6 occasions on which he did this he was totally exhausted and breathless, but did recover quite well especially earlier in the day. The last time was at 5 pm and he took longer to recover but still did well. He slept at intervals after the exercises until the next set of observations or his next exercise.
The new Intensivist he has (until Monday morning when they rotate again) is also a lung doctor and she was pleased with his progress yesterday. He moved from the "non re-breather mask" to the "Hudson mask" without much difficulty yesterday although he was reluctant to give it up the day before. He was largely able to maintain good oxygen saturation levels on the Hudson mask.
I also took in my laptop and organised a mobile broadband USB key so he was briefly able to see what I had written on the blogs and also check out a few emails, which kept him interested for a while.
If all goes well over this weekend (fingers and toes crossed) then they may see if they can change his Peg tube early next week as it is still leaking a lot of bright yellow intestinal juices which are causing pain because they excoriate the skin and make it raw.
Peter has also been moved into a room rather than being in the open ICU area, which is a bit more comfortable for me and he gets to see outside, but he is not in view of the nurses station and that has been worrying him in case he is in need but they don't respond quickly enough. He has also been sitting up and sleeping in the electric recliner chair as that is better for his lung expansion. Although, as you can imagine, only getting out of the chair 6 times a day for a few minutes, means he is having some painful pressure areas on his bottom.
He has had a few welcome visitors from work colleagues, which he has really appreciated, although the visits have to be necessarily very brief to either fit in with his regime or because he is so tired after each one. The nurses have said 5 - 10 minutes only per visit and 2 people per time. But Peter has been very interested in what everyone is doing now. His observation that not a lot seemed to have changed in the 3 years since he had left is probably true of many large organisations.
So the challenge continues over this next 2 days - more exercises with the hope that they shift the phlegm in his lungs and the doctors will continue to treat him as he wishes, which is that they don't give up on him.
Leanne
The new Intensivist he has (until Monday morning when they rotate again) is also a lung doctor and she was pleased with his progress yesterday. He moved from the "non re-breather mask" to the "Hudson mask" without much difficulty yesterday although he was reluctant to give it up the day before. He was largely able to maintain good oxygen saturation levels on the Hudson mask.
I also took in my laptop and organised a mobile broadband USB key so he was briefly able to see what I had written on the blogs and also check out a few emails, which kept him interested for a while.
If all goes well over this weekend (fingers and toes crossed) then they may see if they can change his Peg tube early next week as it is still leaking a lot of bright yellow intestinal juices which are causing pain because they excoriate the skin and make it raw.
Peter has also been moved into a room rather than being in the open ICU area, which is a bit more comfortable for me and he gets to see outside, but he is not in view of the nurses station and that has been worrying him in case he is in need but they don't respond quickly enough. He has also been sitting up and sleeping in the electric recliner chair as that is better for his lung expansion. Although, as you can imagine, only getting out of the chair 6 times a day for a few minutes, means he is having some painful pressure areas on his bottom.
He has had a few welcome visitors from work colleagues, which he has really appreciated, although the visits have to be necessarily very brief to either fit in with his regime or because he is so tired after each one. The nurses have said 5 - 10 minutes only per visit and 2 people per time. But Peter has been very interested in what everyone is doing now. His observation that not a lot seemed to have changed in the 3 years since he had left is probably true of many large organisations.
So the challenge continues over this next 2 days - more exercises with the hope that they shift the phlegm in his lungs and the doctors will continue to treat him as he wishes, which is that they don't give up on him.
Leanne
Thursday, July 30, 2009
Four Crucial Days
Doctors told Peter and I last night that he has 4 days to show significant improvement before they cease to actively fight the pneumonia!
This is another major blow! Apparently he has been showing some improvement but not fast enough and so he now has to get up and try to walk around, get rid of the fluid/phlegm on his lungs and stay off the Cpapp mask (which helps him breathe both in and out breaths) as much as possible. Yesterday Peter did stay off the mask 11 and 1/2 hours which is his longest since coming into hospital last week. So that's a positive step. He has to try to stand and expand his lungs to remove the phlegm on at least 6 occasions today. I know he is determined but also exhausted and gets distressed when pushed too far. But this is the challenge and he has to do it well or die. So I will be trying to encourage him as much as possible over the next few days. I will also be asking what the usual dose of antibiotics is and encouraging the doctors not to abandon him if he is almost there but not quite. Most of the intensivists have pulled out now but one is keeping the faith and is encouraging.
Nothing more to say right now. All is very grim and neither of us can bear the alternative to failure.
Leanne
This is another major blow! Apparently he has been showing some improvement but not fast enough and so he now has to get up and try to walk around, get rid of the fluid/phlegm on his lungs and stay off the Cpapp mask (which helps him breathe both in and out breaths) as much as possible. Yesterday Peter did stay off the mask 11 and 1/2 hours which is his longest since coming into hospital last week. So that's a positive step. He has to try to stand and expand his lungs to remove the phlegm on at least 6 occasions today. I know he is determined but also exhausted and gets distressed when pushed too far. But this is the challenge and he has to do it well or die. So I will be trying to encourage him as much as possible over the next few days. I will also be asking what the usual dose of antibiotics is and encouraging the doctors not to abandon him if he is almost there but not quite. Most of the intensivists have pulled out now but one is keeping the faith and is encouraging.
Nothing more to say right now. All is very grim and neither of us can bear the alternative to failure.
Leanne
Tuesday, July 28, 2009
A Very Distressing Evening
Peter has had a very trying few days, especially yesterday afternoon. He had a central line changed in his neck to try to stem any possible infection but the arterial line in his arm was not able to be changed and could cause problems if it isn't changes as well as if it is changed. A catch 22 situation.
I have taught Peter how to send SMS texts and he sent several late last night, wanting people to know he was "trapped finally into silence as doctors one by one first project hope and then snatch it away with a new and different crisis". He feels he is the "man in a plastic mask" as the oxygen machine he is on doesn't allow him to talk and he can only communicate by way of a small white board.
He was able to get out into a chair yesterday with the assistance of a lifting machine and several nurses and wardsmen, which was good. He is also having some success with getting off the mask onto a less invasive mask from time to time and he has been maintaining a reasonably good oxygen saturation during those times.
He has been told that he may not leave hospital alive this time and that some of the doctors think he should be made comfortable and not treated too actively. The last straw came last night when we were told that his arm could (if things went wrong with the arterial line in his hand) go black and be amputated. SHOCK, HORROR to say the least; not only that but that we should both come to terms with the fact he is going to die in the near future and that it is clear we haven't been able to do so. I have to say that went down like a lead balloon between us both!! I told the doctor that the theory of "acceptance" of death and the reality when faced with it are two very different things. My theory is that there are many factors which affect one's view on death and unless you have a strong religious faith or have had enough, then the only people who aren't frightened of death are those that don't know it's about to happen. Anyway, all in all we did not a happy time yesterday.
Peter is keen to see friends as he is fearful he may not live long. However, my only proviso is don't come if you or anyone you come into contact is sick - as he is on every conceivable antibiotic now and can't cope with more infection.
Leanne
I have taught Peter how to send SMS texts and he sent several late last night, wanting people to know he was "trapped finally into silence as doctors one by one first project hope and then snatch it away with a new and different crisis". He feels he is the "man in a plastic mask" as the oxygen machine he is on doesn't allow him to talk and he can only communicate by way of a small white board.
He was able to get out into a chair yesterday with the assistance of a lifting machine and several nurses and wardsmen, which was good. He is also having some success with getting off the mask onto a less invasive mask from time to time and he has been maintaining a reasonably good oxygen saturation during those times.
He has been told that he may not leave hospital alive this time and that some of the doctors think he should be made comfortable and not treated too actively. The last straw came last night when we were told that his arm could (if things went wrong with the arterial line in his hand) go black and be amputated. SHOCK, HORROR to say the least; not only that but that we should both come to terms with the fact he is going to die in the near future and that it is clear we haven't been able to do so. I have to say that went down like a lead balloon between us both!! I told the doctor that the theory of "acceptance" of death and the reality when faced with it are two very different things. My theory is that there are many factors which affect one's view on death and unless you have a strong religious faith or have had enough, then the only people who aren't frightened of death are those that don't know it's about to happen. Anyway, all in all we did not a happy time yesterday.
Peter is keen to see friends as he is fearful he may not live long. However, my only proviso is don't come if you or anyone you come into contact is sick - as he is on every conceivable antibiotic now and can't cope with more infection.
Leanne
Sunday, July 26, 2009
X-Rays Show Some Improvement
Yesterday Peter's daily chest X-Ray showed an improvement.
This is as a result of the sputum culture showing that the bacteria responsible for Peter's Pneumonia is "Pseudomonas" and the doctors are now giving Peter the specific antibiotics for that bacteria and reducing the broad spectrum ones. That has been happening since Thursday night and the doctors said that the antibiotics would take between 48 and 72 hours to start to show whether there was any improvement.
The Intensivist said to us that if Peter was in poor physical condition or was not a fighter then they would make him comfortable and let the Pneumonia take him. But as we have been able to keep him in good nutritional condition through the Peg tube feeds and he is so determined to try to beat this, they will fight this as aggressively as they can with everything at their disposal. I am so pleased that he has some physical reserves to help him otherwise it would be a very different story I would be writing right now.
So we are starting to be quietly pleased about that small improvement. Although, we both understand that in the overall scheme of things Peter is not going to be cured from the cancer, we are hopeful that he can get over the Pneumonia, come home and maybe resume the chemotherapy so he can gain as much time as is possible.
I am continuing to spend 9 or 10 hours a day with Peter and that is useful for him as he can't talk with the Bipapp mask on and while he has a little whiteboard for messages it's neither easy or quick to communicate his history or his needs with that, which is something I can do.
Will keep you posted as and when I can.
Leanne
This is as a result of the sputum culture showing that the bacteria responsible for Peter's Pneumonia is "Pseudomonas" and the doctors are now giving Peter the specific antibiotics for that bacteria and reducing the broad spectrum ones. That has been happening since Thursday night and the doctors said that the antibiotics would take between 48 and 72 hours to start to show whether there was any improvement.
The Intensivist said to us that if Peter was in poor physical condition or was not a fighter then they would make him comfortable and let the Pneumonia take him. But as we have been able to keep him in good nutritional condition through the Peg tube feeds and he is so determined to try to beat this, they will fight this as aggressively as they can with everything at their disposal. I am so pleased that he has some physical reserves to help him otherwise it would be a very different story I would be writing right now.
So we are starting to be quietly pleased about that small improvement. Although, we both understand that in the overall scheme of things Peter is not going to be cured from the cancer, we are hopeful that he can get over the Pneumonia, come home and maybe resume the chemotherapy so he can gain as much time as is possible.
I am continuing to spend 9 or 10 hours a day with Peter and that is useful for him as he can't talk with the Bipapp mask on and while he has a little whiteboard for messages it's neither easy or quick to communicate his history or his needs with that, which is something I can do.
Will keep you posted as and when I can.
Leanne
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