Although Chris had a more peaceful night after having a lorazepam before sleep, it hasn't taken away the mucous build ups. He has had another pretty miserable day from that point of view.
Kevin, his brother helped me transfer him this morning. This afternoon Chris came with me to pick up one of his prescriptions. Even in the car he needed to have a bowl with him. While we were there Chris said he needed the loo. I panicked a bit as I knew there was no one at home to help me. I phoned Kevin, but he was out of range, so I phoned my daughter-in-law, luckily she was home and she came to help.
Not long after our GP called in, Chris`s palliative care nurse had asked him to come and see him. He wanted to check on Chris and in his words` have that conversation.` Now no one can give a time scale with this disease, Chris could plateau with it as it is for quite a long time or it could continue it`s progression quite quickly. While he was reiterating that point, he was very delicately bringing up end of life stuff. Firstly Chris wishes to stay at home, he does not wish to go into hospital, especially to die. I was concerned that if something happened and Chris passed away suddenly, that it would be classed as an unexplained death and the police would be called. I have witnessed that and it is undignified and distressing in so many ways, so he said he would put into place documentation stating that Chris had MND and that it would mean it was an expected death. He would also have it written down that Chris wanted his life to end at home and not in hospital. Chris has always found these conversations very hard, understandably, but I think the way he has been feeling recently has made him seriously think about things.
The other question his doctor asked was about a DNR, (Do Not Resuscitate). This was the one thing Chris has had trouble with, but today, when asked, he said he did not wish to be resuscitated in any way and to get the forms prepared for this. This just means if Chris were to have a cardiac or pulmonary arrest that he would not get resuscitated, it did not mean that if he developed pneumonia for example that he wouldn`t be treated. I think him making this decision has everything to do with how miserable his symptoms are making him feel at the moment and more importantly knowing that he wasn`t going to get any better. Our doctor also said that although there was nothing to be done to help him breathe better, there was morphine or Oramorph, which helps ease the feeling of gasping for breath. Chris was slightly panicked by the mention of morphine, but he explained it was a low dose given via the PEG. Chris declined at the moment, but he has promised to consider it if things get worse.
Our GP was so lovely, it cannot be easy for them to have to broach this kind of conversation. He was gentle and patient and explained things clearly. In a way, it put both of our minds at rest, especially me, as I wanted Chris to make these decisions, not for them to be left to me at a time of crisis. The doctor also said he would pop in once a fortnite to check on Chris.
Chris wanted to pop outside again for a while, I went with him today, he took a bowl with him to cope with any mucous problems. He says it is easier for him to breathe in the fresh air, but he kept pausing to gaze at the tractors and machinery that were being prepared for the sale. It was like he was staring in the `Mirror of Erised` like in Harry Potter, staring at the things he wants, but can`t have. I found it very touching, he not only has to deal with having MND, but all the changes on the farm too. By the end of the month all the stock and all the machinery will be gone, it will be very strange and more than a little sad. He does have the luxury though of a life time of wonderful memories that go back as far as he can remember. He will always have Gwarth-an-drea with him.
Having `the conversation` certainly hits home that Chris has now entered the later stages of this hateful disease. This stage could last a very long time, or it could continue to progress...it is anybody`s guess on that one, nobody knows. He is 57, it has only been 15 months since diagnosis, we didn`t think he would reach this stage so soon, recently the progression has certainly snowballed.
Bloody hell this sucks and as Chris says,` I can`t do bugger all.`
Not long after our GP called in, Chris`s palliative care nurse had asked him to come and see him. He wanted to check on Chris and in his words` have that conversation.` Now no one can give a time scale with this disease, Chris could plateau with it as it is for quite a long time or it could continue it`s progression quite quickly. While he was reiterating that point, he was very delicately bringing up end of life stuff. Firstly Chris wishes to stay at home, he does not wish to go into hospital, especially to die. I was concerned that if something happened and Chris passed away suddenly, that it would be classed as an unexplained death and the police would be called. I have witnessed that and it is undignified and distressing in so many ways, so he said he would put into place documentation stating that Chris had MND and that it would mean it was an expected death. He would also have it written down that Chris wanted his life to end at home and not in hospital. Chris has always found these conversations very hard, understandably, but I think the way he has been feeling recently has made him seriously think about things.
The other question his doctor asked was about a DNR, (Do Not Resuscitate). This was the one thing Chris has had trouble with, but today, when asked, he said he did not wish to be resuscitated in any way and to get the forms prepared for this. This just means if Chris were to have a cardiac or pulmonary arrest that he would not get resuscitated, it did not mean that if he developed pneumonia for example that he wouldn`t be treated. I think him making this decision has everything to do with how miserable his symptoms are making him feel at the moment and more importantly knowing that he wasn`t going to get any better. Our doctor also said that although there was nothing to be done to help him breathe better, there was morphine or Oramorph, which helps ease the feeling of gasping for breath. Chris was slightly panicked by the mention of morphine, but he explained it was a low dose given via the PEG. Chris declined at the moment, but he has promised to consider it if things get worse.
Our GP was so lovely, it cannot be easy for them to have to broach this kind of conversation. He was gentle and patient and explained things clearly. In a way, it put both of our minds at rest, especially me, as I wanted Chris to make these decisions, not for them to be left to me at a time of crisis. The doctor also said he would pop in once a fortnite to check on Chris.
Chris wanted to pop outside again for a while, I went with him today, he took a bowl with him to cope with any mucous problems. He says it is easier for him to breathe in the fresh air, but he kept pausing to gaze at the tractors and machinery that were being prepared for the sale. It was like he was staring in the `Mirror of Erised` like in Harry Potter, staring at the things he wants, but can`t have. I found it very touching, he not only has to deal with having MND, but all the changes on the farm too. By the end of the month all the stock and all the machinery will be gone, it will be very strange and more than a little sad. He does have the luxury though of a life time of wonderful memories that go back as far as he can remember. He will always have Gwarth-an-drea with him.
Having `the conversation` certainly hits home that Chris has now entered the later stages of this hateful disease. This stage could last a very long time, or it could continue to progress...it is anybody`s guess on that one, nobody knows. He is 57, it has only been 15 months since diagnosis, we didn`t think he would reach this stage so soon, recently the progression has certainly snowballed.
Bloody hell this sucks and as Chris says,` I can`t do bugger all.`
