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Elephants and their part in a dignified death

User
Posted 11 Feb 2015 at 14:11
These days I rarely feel I have a new conversation that I should start, I try to keep up with everyone's news and offer a little information if I think it might help. The title I have given this may have you wondering However I have been deeply touched by some recent postings on how Men have died when their personal battle with this horrid disease is over. For one thing it is incredibly hard to write about it at all but it is also very hard to read about it too, one of those situations where you want to read because you want to know and understand and yet once you have it stays as a troubling thought in your mind. You want to tell the partner, wife, family member or friend who posts just how sad and sorry you are but for some the words choke up so badly you cannot express them at all. Those postings take huge courage and make us all aware of the darkest moments this disease can bring.

Nobody wants to have the end of their life full of pain, anguish and fear so I thought I would try in the best way I can to explain how some steps can be taken to try and reduce or completely avert some or all of these things. I am just so sorry that I could not have done this in such detail as a single conversation sooner. Those familiar with the conversation "Mick's Day of Reckoning" will know that I did post little snippets of this as things happened so now this is me doing it as a complete summary all in this one place.

This is a story from my own personal experience and it involves members of this forum whom in general I will not name but of course they will know who they are. They helped me and Mick at various stages to prepare and cope sometimes unknowingly and to them I am eternally grateful.

The first elephant (as I will call them) happened shortly after Mick's diagnosis and test results came through, PSA 545 and rising rapidly, Gleason 10 and extensive mets in lymph nodes and Bones. Mick specifically advised our Oncologist that he did not want a prognosis and I felt that knowing would make it impossible for me to deal with his battle without showing what I knew. I tried to find someone with similar results anything to help me compare although I had mentally decided that this was probably going to be a futile search. I met up with someone from the forum as I had found an early kindred spirit in my journey. Over coffee she initially shocked me by telling me that things sounded really bad Mick's lack of response to initial HT etc. She asked me if I felt I would be able to have a conversation really early on with Mick about Elephants in the room. I went away thinking it would be impossible to do this just months after Mick had been told the worst news ever. However a few weeks later he surprised me by asking me to sit and go through everything with him, nothing specific at this stage just sharing our thoughts on what we could do to be prepared for his, by now inevitable early death, if it was 6 months a year or 3 years the outcome would still be the same.

We made a list and then decided who would try and deal with what. It covered, finances, communication, funeral wishes, End of Life care and domicile, holiday planning and some special vows we made to each other in case we might need them.

Once that was done we just kept each other informed on any things that were done and ticked things off as we went along.

The second elephant happened very soon afterwards, I read a few posts to Mick from forum members, two who had already passed and one who is still with us today, about facing mortality and making decisions on stopping treatment. This prompted Mick to read all sorts of things he found on the internet about facing death, short stories, articles by philosophers, Stephen Hawking and stories from the trenches of WW1 he said nothing for weeks maybe even a month. Then all of a sudden out of the blue he said that he was not afraid of dying, he reasoned that he had achieved so much in his life and felt that fate was just that ... fate. he just wanted me to know that he was not scared. After that Life rattled along for another 6 months or so with some really good times along the way. Several Newark get togethers and the friendship and camraderie from the forum blossomed into a vital part of our lives. No more talk about elephants in or out of the room for some time to come.

The third elephant came in the hospital after he had suffered his first Spinal cord compression he hated being in the hospital, not that the care was particularly bad but he hated the noise, smells and the fact that it was always hot, unbearably hot. He wanted to come home more than anything and when he developed the life threatening intestinal blockage I swear he fought his way back from that against all odds because he most emphatically did not want to die in there. One of my vows to him was to fight his corner to get him moved to the hospice and so I did just that. He knew that the hospice would do their very best to get him well enough to come home, he also felt that he would be able to have more control over his care and better guidance on the transition from palliative care to end of life care if it was coming to that stage.

The fourth elephant was his decision once he knew that he did not have very much time left at all, to settle a stupid disagreement with our future Son in Law that had started years before and just festered, it was a very emotional time when finally we could all be together as a family united in his last stand. He made our daughter and her partner promise to go ahead with their wedding plans come what may and know that they both had his unreserved blessing .

The fifth elephant was another big decision, which was for him to have a very frank and detailed discussion with one of the fabulous palliative care consultants at the hospice, as always he wanted me there by hs side to hear everything. He asked for a full account of what might happen in the days or possibly weeks before he died, he wanted to know every detail, what it would mean for him in terms of pain and how that would be managed what signs there would be that things were coming to a close etc. He also wanted to know what he could do to have control over all of this. It was a really difficult hour but once it had been done Mick felt liberated. That night I think he slept really well knowing he could actually plan and control his destiny to some degree. In the meantime everything had been arranged and sorted out at home so that he could leave the hospice very soon.

The sixth and penultimate elephant was both of us sitting with the same palliative care consultant and a staff nurse and having them make an informal end of life care plan (this is not an end of life directive as that is a legal document which takes time to draw up and is usually only done in cases where the patient may lose the ability to make decisions for themself) His first stipulation was a DNR agreement. Next the consultant went through a list of things that could happen so that Mick could say if he wanted them to treat for them or not, also if he was prepared to go back to the hospital for treatments that could not be administered at the hospice or at home. He could also choose between any pain being managed in an attempt to keep him as lucid as possible or to have more medication and potentially be asleep most of the time. (As it happens thank God it never came to that choice) He was also able to stipulate that he had first say and if he was incapacitated the decision would be mine. Biggest elephant ever in a room had been successfully evicted and probably the hardest one for us both.

The final elephant was choosing to come home to die, he had always sworn he wanted to be in the hospice but one of the vows I asked him to make with me back at the start was that he could always change his mind about anything and I would make sure it happened. Because of all the other preparation he felt really confident that he would not be in any pain he had suffered none for weeks and with a spine so badly compromised it really was unlikely that he would. If something flared up I had everything I needed on hand or availabe within 30 mins or so from the Marie Curie on call team. At this point he told me that his biggest reason for choosing the hospice had been to protect my feelings about our home, he was so worried that if he died there it would taint it in some way.

In Mick's final week he saw many of his friends from around the country and also those that flew in from America, he spoke with everyone else and through our daughter, made his very last gesture to me, although I would not find out about that until exactly a week after his death when it was my birthday. He was eating well and chatty right up to the final evening and died very peacefully indeed, he just slowly stopped breathing and was gone. I was on my own having sent the night carer home when it was obvious what was going to happen and two phone calls later, first to the hospice at home team who were with me in 20 mins and second a pre arranged call to the one person I will shamelessly name Si Si Superman who was by his bedside within 30 mins to say a final goodbye to his buddy and take good care of me.

Maybe it was his life in the RAF flying and then in training that made him want everything organised in military style, but in absolute truth he made everything so much easier for me and that was one of the kindest and most considerate things a dying man could have done.

xxx

Mo

Edited by member 11 Feb 2015 at 20:24  | Reason: Not specified

User
Posted 11 Feb 2015 at 14:11
These days I rarely feel I have a new conversation that I should start, I try to keep up with everyone's news and offer a little information if I think it might help. The title I have given this may have you wondering However I have been deeply touched by some recent postings on how Men have died when their personal battle with this horrid disease is over. For one thing it is incredibly hard to write about it at all but it is also very hard to read about it too, one of those situations where you want to read because you want to know and understand and yet once you have it stays as a troubling thought in your mind. You want to tell the partner, wife, family member or friend who posts just how sad and sorry you are but for some the words choke up so badly you cannot express them at all. Those postings take huge courage and make us all aware of the darkest moments this disease can bring.

Nobody wants to have the end of their life full of pain, anguish and fear so I thought I would try in the best way I can to explain how some steps can be taken to try and reduce or completely avert some or all of these things. I am just so sorry that I could not have done this in such detail as a single conversation sooner. Those familiar with the conversation "Mick's Day of Reckoning" will know that I did post little snippets of this as things happened so now this is me doing it as a complete summary all in this one place.

This is a story from my own personal experience and it involves members of this forum whom in general I will not name but of course they will know who they are. They helped me and Mick at various stages to prepare and cope sometimes unknowingly and to them I am eternally grateful.

The first elephant (as I will call them) happened shortly after Mick's diagnosis and test results came through, PSA 545 and rising rapidly, Gleason 10 and extensive mets in lymph nodes and Bones. Mick specifically advised our Oncologist that he did not want a prognosis and I felt that knowing would make it impossible for me to deal with his battle without showing what I knew. I tried to find someone with similar results anything to help me compare although I had mentally decided that this was probably going to be a futile search. I met up with someone from the forum as I had found an early kindred spirit in my journey. Over coffee she initially shocked me by telling me that things sounded really bad Mick's lack of response to initial HT etc. She asked me if I felt I would be able to have a conversation really early on with Mick about Elephants in the room. I went away thinking it would be impossible to do this just months after Mick had been told the worst news ever. However a few weeks later he surprised me by asking me to sit and go through everything with him, nothing specific at this stage just sharing our thoughts on what we could do to be prepared for his, by now inevitable early death, if it was 6 months a year or 3 years the outcome would still be the same.

We made a list and then decided who would try and deal with what. It covered, finances, communication, funeral wishes, End of Life care and domicile, holiday planning and some special vows we made to each other in case we might need them.

Once that was done we just kept each other informed on any things that were done and ticked things off as we went along.

The second elephant happened very soon afterwards, I read a few posts to Mick from forum members, two who had already passed and one who is still with us today, about facing mortality and making decisions on stopping treatment. This prompted Mick to read all sorts of things he found on the internet about facing death, short stories, articles by philosophers, Stephen Hawking and stories from the trenches of WW1 he said nothing for weeks maybe even a month. Then all of a sudden out of the blue he said that he was not afraid of dying, he reasoned that he had achieved so much in his life and felt that fate was just that ... fate. he just wanted me to know that he was not scared. After that Life rattled along for another 6 months or so with some really good times along the way. Several Newark get togethers and the friendship and camraderie from the forum blossomed into a vital part of our lives. No more talk about elephants in or out of the room for some time to come.

The third elephant came in the hospital after he had suffered his first Spinal cord compression he hated being in the hospital, not that the care was particularly bad but he hated the noise, smells and the fact that it was always hot, unbearably hot. He wanted to come home more than anything and when he developed the life threatening intestinal blockage I swear he fought his way back from that against all odds because he most emphatically did not want to die in there. One of my vows to him was to fight his corner to get him moved to the hospice and so I did just that. He knew that the hospice would do their very best to get him well enough to come home, he also felt that he would be able to have more control over his care and better guidance on the transition from palliative care to end of life care if it was coming to that stage.

The fourth elephant was his decision once he knew that he did not have very much time left at all, to settle a stupid disagreement with our future Son in Law that had started years before and just festered, it was a very emotional time when finally we could all be together as a family united in his last stand. He made our daughter and her partner promise to go ahead with their wedding plans come what may and know that they both had his unreserved blessing .

The fifth elephant was another big decision, which was for him to have a very frank and detailed discussion with one of the fabulous palliative care consultants at the hospice, as always he wanted me there by hs side to hear everything. He asked for a full account of what might happen in the days or possibly weeks before he died, he wanted to know every detail, what it would mean for him in terms of pain and how that would be managed what signs there would be that things were coming to a close etc. He also wanted to know what he could do to have control over all of this. It was a really difficult hour but once it had been done Mick felt liberated. That night I think he slept really well knowing he could actually plan and control his destiny to some degree. In the meantime everything had been arranged and sorted out at home so that he could leave the hospice very soon.

The sixth and penultimate elephant was both of us sitting with the same palliative care consultant and a staff nurse and having them make an informal end of life care plan (this is not an end of life directive as that is a legal document which takes time to draw up and is usually only done in cases where the patient may lose the ability to make decisions for themself) His first stipulation was a DNR agreement. Next the consultant went through a list of things that could happen so that Mick could say if he wanted them to treat for them or not, also if he was prepared to go back to the hospital for treatments that could not be administered at the hospice or at home. He could also choose between any pain being managed in an attempt to keep him as lucid as possible or to have more medication and potentially be asleep most of the time. (As it happens thank God it never came to that choice) He was also able to stipulate that he had first say and if he was incapacitated the decision would be mine. Biggest elephant ever in a room had been successfully evicted and probably the hardest one for us both.

The final elephant was choosing to come home to die, he had always sworn he wanted to be in the hospice but one of the vows I asked him to make with me back at the start was that he could always change his mind about anything and I would make sure it happened. Because of all the other preparation he felt really confident that he would not be in any pain he had suffered none for weeks and with a spine so badly compromised it really was unlikely that he would. If something flared up I had everything I needed on hand or availabe within 30 mins or so from the Marie Curie on call team. At this point he told me that his biggest reason for choosing the hospice had been to protect my feelings about our home, he was so worried that if he died there it would taint it in some way.

In Mick's final week he saw many of his friends from around the country and also those that flew in from America, he spoke with everyone else and through our daughter, made his very last gesture to me, although I would not find out about that until exactly a week after his death when it was my birthday. He was eating well and chatty right up to the final evening and died very peacefully indeed, he just slowly stopped breathing and was gone. I was on my own having sent the night carer home when it was obvious what was going to happen and two phone calls later, first to the hospice at home team who were with me in 20 mins and second a pre arranged call to the one person I will shamelessly name Si Si Superman who was by his bedside within 30 mins to say a final goodbye to his buddy and take good care of me.

Maybe it was his life in the RAF flying and then in training that made him want everything organised in military style, but in absolute truth he made everything so much easier for me and that was one of the kindest and most considerate things a dying man could have done.

xxx

Mo

Edited by member 11 Feb 2015 at 20:24  | Reason: Not specified

User
Posted 15 Feb 2015 at 11:23
I have read this thread with interest, and agree much of the information would have helped me five years ago as I was losing Mike. But for anyone reading and finding it difficult to talk I feel all is not lost if you don't find the time or the words. Thank you, Mo, for your post and I know it will have helped so many.

I felt I wanted to talk as it became clear to me that Mike hadn't much time left, but I didn't want to be specific and give him a chance to talk about it his way, which proved to be not to talk about it. I left leaflets around that I had picked up from the hospital from the Dying Matters organisation, but all he asked was why I had them. I supposed he was in denial about the state of his health and decided not to talk about it again. However, since then I have realised on many occasions he was aware and did what he could to prepare, it must have just been too painful to discuss.

As an eldest son he had always been expected to be in control in his family and this attitude carried on until the end. Slowly I have come to realise the many things he had thought about but been unable to communicate, as we fought each day's battles to survive. As his work had always been so important to him when he became unable to go out to work he set up an Internet business, which never traded and I had to close down, but he never gave up hope of a return to some kind of recovery, which gave us a day to day focus as things got tough. His last days in hospital were spent organising tradesmen and asking my son to supervise them so the house was left how he wanted to leave it and there weren't unfinished jobs. He still took control of his family and regularly asked me to stop them visiting as he hadn't the energy for them. Really I think I became an extension of him, running his business and organising his medical and social needs, which I now feel proud that he trusted me to do.

My own father died suddenly at 53 when I was 19 and then my brother at 34 when I was 37, leaving me to support my mother and sort things out so maybe I was fortunate to have the experience. But I think what I am trying to say is that although at the time Mike was ill I would have liked to talk openly, it really wasn't his way. I could have forced the discussions and have no idea if they would have made it easier, but Mike remained in control in his own way, which may have made it easier for him.

I am hoping the future will be easier with more of this type of information available and people encouraged to use it, but if, for whatever reason, talking doesn't happen all is not lost, but how I wish this type of discussion had been around five years ago.

Janet, x

User
Posted 13 Feb 2015 at 00:56
Allison

no way should you be anything other than just how you are, I think you are what I have always said a kindred spirit your honesty brought me straight into the place I needed to be. Mick's situation was bad, very bad and I was dodging bullets and catching roses, that was not going to make life any easier for either of us. It was your turn of phrase that gave me the idea to use the wording of this title. Along the way and since you have and continued to be a dear friend , I am very blessed.

xx

Mo

Show Most Thanked Posts
User
Posted 12 Feb 2015 at 07:04

Mo, a wonderful reflection on how you and Mick met all the issues confronting you. In many ways you never allowed the elephants in the room to grow and fester. Your words show a joint determination to meet every twist and turn with an openness and transparency which is awe inspiring. I have to say the approach you now reflect on is how I got to know you both in that too brief time I was able to meet and chat with yourself and Mick.

There is no right way to approach things but if there are a couple of lessons you can draw it is to meet all these difficult decisions head on becasue they will come and meet you anyway. That does not mean it's easy or always comfortable but it removes those elephants in ways which allowed you both to plan for those final moments.

It is a privilege to know you and Mick and all sufferers in their plight. We can and should learn from each other as we conduct our own personal battles. Thank you so much for sharing this!

User
Posted 12 Feb 2015 at 08:33

Thank you for sharing.

dave

User
Posted 12 Feb 2015 at 08:43

I am not a man of words - I could never come close to writing so eloquently. A wonderful, inspiring and emotional read.

Paul

Stay Calm And Carry On.
User
Posted 12 Feb 2015 at 09:30

Mandy Mo. Thank you XXXXX

We can't control the winds - but we can adjust our sails
User
Posted 12 Feb 2015 at 10:40

I'm just out to dinner with friends and you've made me cry, Mo. As always, thank you for sharing from your heart, not always easy posts to write but so very important !

 

Fiona x

User
Posted 12 Feb 2015 at 11:44

 

A good friend died very suddenly two weeks ago. Keith was 70 and fit and looked well. He went out on the Saturday morning to shoot with friends and after the shoot they were standing having a cuppa when he just fell down and died of massive heart attack. Sue was absolutely distraught. One moment she was a wife with plans for summer holidays and their future together and the next moment he had gone and because he had gone out so early in the morning she didn't even see him leave the house never mind have the opportunity to say goodbye. 

 

At the funeral last week lots of people were saying things like 'if you've got to go, that's the way to do it'. I'm not so sure now.

 

Thank you Mo.

 

Steve

 

 

User
Posted 12 Feb 2015 at 12:00

What a lovely post, brings back so many memories of such a great guy.

Not many things make me cry but this did

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 12 Feb 2015 at 19:27

Speechless....I think that will help so many people.

Thank you for sharing what must have been such a difficult post to write

Bri x

User
Posted 12 Feb 2015 at 20:31

Thank you Mandy, what a lovely post . I was moved to tears reading it and I know that it is something that you have wanted to do for some time and today that time was right for you.

Thank you X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Feb 2015 at 22:03
Oh Mandy

I feel so guilty for being the one who told you it was very serious, I remember the day so well and honestly thought you knew what it all meant as you handled the conversation so intelligently and calmly.

Your husband was an amazing man and he was married to an extraordinary woman. I for one, feel privileged to know you.

Thank you for bringing this Elephant out into the open, it is important for many of us to make decisions for the future (even if it is to ignore the lot of it and carry on regardless) as it makes the transition a little easier for all concerned.

I think next time someone asks me about PCA I may not be so open, I'm still not sure it was the right thing to do. I'm not saying that for validation, it's always a hard question to ask yourself. Do any of us really want to know?

With huge love to you

Allison xxx

User
Posted 13 Feb 2015 at 00:56
Allison

no way should you be anything other than just how you are, I think you are what I have always said a kindred spirit your honesty brought me straight into the place I needed to be. Mick's situation was bad, very bad and I was dodging bullets and catching roses, that was not going to make life any easier for either of us. It was your turn of phrase that gave me the idea to use the wording of this title. Along the way and since you have and continued to be a dear friend , I am very blessed.

xx

Mo

User
Posted 13 Feb 2015 at 11:42

A thoughtful post ,Mo.  Along a similar vein I wish everyone would learn to cook,use a washing machine,handle finances so that if they are left alone they can cope.  That is one thing I do not have to worry about my OH. I have also left a list of paswords in coded form for our children.  A friend was unable to access her son's computer after his unexpected death and it meant paying someone to get in after explaining his sad loss.

User
Posted 13 Feb 2015 at 21:32

Mo

Very moving, and an inspiration to others.

Thanks Chris

User
Posted 14 Feb 2015 at 00:11

Mandy,
Thank you for posting this.
I'm embarrassed to say I have not posted until now because when I read it there were no replies and I did not want to sully it with a bland response.
Now that others have posted I feel more comfortable in posting.
This will be a touchstone for me and I will consider it always.

Thank you.

Kevin

User
Posted 14 Feb 2015 at 15:21
Kevin

thanks, I know you probably saw from the Sheffield course that this is a subject area very dear to my heart and one that I feel so much more needs to be done. I am actively working on improving the support specifically for end of life care, locally at first but hopefully with a wider influence once initial feedback and observaions have been made.

see you in June

xx

Mo

User
Posted 14 Feb 2015 at 15:54

Great post Mo, this is a delicate and sensitive area that needs more consideration. Wish you well in your efforts to in this respect

Barry
User
Posted 14 Feb 2015 at 18:03

Dear Mo

Thank you for sharing. Your treatment of the elephants is something we can all learn from.

With my best wishes

david

User
Posted 15 Feb 2015 at 00:50

Hi Mo,

Thank you for sharing this, I know how hard it can be to write about this. 

I had to watch my beloved father-in-law slowly die from motor neurone disease some years ago, I still remember the pain we went through.  Everyday seemed to be worse than the day before, an unending nightmare.  I was at his bedside when he passed away.

I've had the experience of sudden death too, when I was only 18 years old.  My dad died of a heart attack (he was only 47) while we were preparing for a family day out.  That came as such a shock as I had never experienced death before.  I felt awful for many years that I never had chance to say goodbye and many other things I would have said if I knew our time together was limited.  One thing that did help ease the pain in the end was that, every so often, I would dream that I would meet my dad, and tell him everything that had been happening in my life since we'd last met.  This reassured me that, in a sense, he'd never left me.

Mo, I think you have helped so many people by sharing your experiences here.  I'm overwhelmed by the courage that both you and Mick showed given your situation.  My big regret is that I never had chance to meet him.  The fact that my cancer journey was starting on the same day as Mick died, even at the same time, has always made me feel very close to you both.

Thank you for all the good work you're doing to help us all.

Steve x 

Edited by member 15 Feb 2015 at 01:07  | Reason: Not specified

User
Posted 15 Feb 2015 at 00:50

Hi Mandy,
I may have picked up on the odd something during the course.. :)

Is this, or something similar, something that perhaps should be in the tool kit?
The toolkit is good at the facts and mechanics of this disease but perhaps is a little lacking in the softer, more human issue?

I wonder how one would go about it?

Kevin

User
Posted 15 Feb 2015 at 04:59
Kevin

I knoow that PCUK, Macmillan, Maggies and other organisations are looking to do more for awareness of end of life issues and to improve on any literature that is already out there. I guess one problem is that things are constantly changing both legally and medically so anything that does get done would have to be a little generic.

There is a recognition that more help is needed though and that is at least a place to start from. I do hope that the debates that took place amongst the participants and facilitators of the Sheffield course (which of course included PCUK)gave some insight to those people who can affect changes.

Steve, thank goodness yourcancer was diagnosed so much earlier than Mick's although the dates are quite a coincidence.

Losing your Dad at such a young age was hard, indeed sudden death brings all sorts of different but equally difficult issues to deal with.

If I can give back a fraction of the help, support and love that has been given and shown to both Mick and myself I will be happy.

xx

Mo

User
Posted 15 Feb 2015 at 11:23
I have read this thread with interest, and agree much of the information would have helped me five years ago as I was losing Mike. But for anyone reading and finding it difficult to talk I feel all is not lost if you don't find the time or the words. Thank you, Mo, for your post and I know it will have helped so many.

I felt I wanted to talk as it became clear to me that Mike hadn't much time left, but I didn't want to be specific and give him a chance to talk about it his way, which proved to be not to talk about it. I left leaflets around that I had picked up from the hospital from the Dying Matters organisation, but all he asked was why I had them. I supposed he was in denial about the state of his health and decided not to talk about it again. However, since then I have realised on many occasions he was aware and did what he could to prepare, it must have just been too painful to discuss.

As an eldest son he had always been expected to be in control in his family and this attitude carried on until the end. Slowly I have come to realise the many things he had thought about but been unable to communicate, as we fought each day's battles to survive. As his work had always been so important to him when he became unable to go out to work he set up an Internet business, which never traded and I had to close down, but he never gave up hope of a return to some kind of recovery, which gave us a day to day focus as things got tough. His last days in hospital were spent organising tradesmen and asking my son to supervise them so the house was left how he wanted to leave it and there weren't unfinished jobs. He still took control of his family and regularly asked me to stop them visiting as he hadn't the energy for them. Really I think I became an extension of him, running his business and organising his medical and social needs, which I now feel proud that he trusted me to do.

My own father died suddenly at 53 when I was 19 and then my brother at 34 when I was 37, leaving me to support my mother and sort things out so maybe I was fortunate to have the experience. But I think what I am trying to say is that although at the time Mike was ill I would have liked to talk openly, it really wasn't his way. I could have forced the discussions and have no idea if they would have made it easier, but Mike remained in control in his own way, which may have made it easier for him.

I am hoping the future will be easier with more of this type of information available and people encouraged to use it, but if, for whatever reason, talking doesn't happen all is not lost, but how I wish this type of discussion had been around five years ago.

Janet, x

User
Posted 15 Feb 2015 at 12:57

Janet, I remember Mike's last days and weeks and the dignity and love with which you carried the load. I admire your strength and nerve in building a new 'normal' for yourself and hope that if needed, I would be able to come somewhere near.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Feb 2015 at 19:46
Janet,

thanks for that, it does show that everyone is different. I am in talks with some people about better guidance on end of life care. I should know more by the time we get to MOS so will let you know.

xx

Mo

 
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