This is the blog I never wished to write, oh dear Lord I never wished this day to come, but write it I must. I promised myself I would see this through, no matter how hard. It is an honest diary of our last night together, it may upset some people, but this is the end of this journey for us. MND has won.
Why am I writing it so soon? Well I don't want to forget anything for a start and because I need to as always and because I don't want to keep reliving and telling it over and over again. Also I had some much needed time to myself today, time to sleep, but it would not come to me, so I found solace the way I always do, by writing my blog.
I am lost, I am stumbling, I am grieving for my darling boy, although I am glad his suffering is over, I cannot believe he is gone. my heart is broken, I want him back in my life so badly. Tiredness and tears weigh heavy on me, I haven't slept yet. I grab at any little piece of Chris I can find for comfort. I need to feel him near me.
I am lost, I am stumbling, I am grieving for my darling boy, although I am glad his suffering is over, I cannot believe he is gone. my heart is broken, I want him back in my life so badly. Tiredness and tears weigh heavy on me, I haven't slept yet. I grab at any little piece of Chris I can find for comfort. I need to feel him near me.
It is 16 months to the day since Chris's diagnosis.
9pm
I gave Chris his nightly medications, Mucodyne, Oramorph and diazepam and then set up his night feed. He tried really hard to sleep, but he had struggled all day with his breathing. His sister had come to see him earlier and when she went to leave he asked her to stay as he felt something was going to happen. I asked him `Like going to die?` and he said yes. He was due a dose of diazepam which I then gave him and that calmed him somewhat. I can't bare to think of him being so afraid.
So many times the last few days I have thought Chris was going to die. As I lay there on duvets piled high on top of the sofa, so I may lie close to him, I wondered yet again if he would make it through the night. I cried many tears and told him how much I loved him. I said "We have had a good marriage haven't we?"and he just managed to say "More than good." To hear his shallow gasps for breath was just too much to bear. Although he could barely speak now, he was aware and could squeeze my hand a little when I squeezed his.
Life has been put on hold as I have barely left his side. Other things can wait, they do not matter. I need to cherish every second we have left together, to be as close to him as I am able.
1am
I gave Chris another dose of Oramorph. I couldn't sleep, I read, I went on my iPad, I read again. I couldn't settle watching him struggle. I raised the bed head, I lowered the bed head, I rearranged the pillows, but he could not get into a position where he could be comfortable. We dozed a little.
2am
Chris was getting distressed. I gave him 1/2 a lorazepam tablet to try and settle him, it settled him for a very short while, but it didn't last long.
3am
I dialed 111 and was referred to the out of hours GP. About 15 minutes later one rang me. I explained the situation and that Chris was in respiratory distress. They said they would get a GP there in an hour, but that I could give him another 10ml of Oramorph meanwhile. While waiting I took his temperature, he seemed hot, it was up a bit, I was worried he may have developed pneumonia, I told him and asked if he wanted to go to hospital, he managed to shake his head and say no. I said OK.
4.10am
The doctor arrived. He went over to Chris and asked him if he was distressed and he said yes. He check his SATS which were 54% and his pulse was 122. I told him I had the driver meds here. He explained that he couldn't set up the driver, but that the district nurses could do it in the morning. He did say he could give Chris diamorphine and medazolam via injection from the meds in the driver pack. He explained to me that this would be a big step up in his palliative care and it would escalate things, but it would ease his distress. I said I understood and that Chris could not be allowed to struggle any more. As the GP was about to inject him Chris called out his sister's name so I went and phoned her to come, she lived an hours drive away. I also phoned my son and his wife to come over.
He had just injected Chris when I arrived back. I told Chris he would feel very sleepy now and that I loved him and that every one loved him and that I would love him for ever and he grunted an acknowledgment at me. I just thought he would be heavily sedated. The doctor said he would wait 15 minutes to make sure he was comfortable.
Chris drifted off and seemed less distressed, the GP initially thought things would take a while, even talking about the driver being set up in the morning. I then also rang his brother, I couldn't get an answer so Jordan went off to get him, he lives 2 miles away.
Chris suddenly changed, he had felt quite hot, but his pallor changed and he felt cooler. The GP called me aside. He said Chris's SATS were very low, his body was fighting to get oxygen around the body which was why his heart rate was so high. He explained the the meds would relax Christopher, but this would also mean his body would stop fighting and that could happen quite soon and he could go quite quickly. Oh my God, so soon. He told me to go to him. He reassured me that he would slip into unconsciousness and be unaware. Tamara, Jordan and Tracey were there, Denise and Kevin hadn't arrived yet. I held Chris`s hand and I could see his finger nails were already blue.Within 15 minutes at around 4.45am Chris took his last breath. I won't lie and say it was peaceful, but it was a lot more peaceful than it would have been. I kissed and hugged my boy and we all cried, oh boy did we cry, Jordan cried like I have never seen him cry. Collective grief at the loss of this wonderful man.
Kevin arrived not long after and then Denise. So many tears were shed, so many tears and then all I could think of was how do I tell Chloe? My only comfort during this time was how peaceful Chris suddenly looked. The pain had gone and he just looked like he was sleeping.
I didn't know what to do, although it was expected it was still a shock, it happened so quick. All I could think of were people I needed to ring, thank God for the family.
Time ticked by so slowly, so many more tears, so many cups of tea, there was disbelief, shock, pain, so much pain, I wanted him back, I wanted him back.
Then the phone call to tell our darling daughter that her daddy had died, oh what an awful call to make, to hear her tears and not be able to comfort her. I just wanted to hug her close to me.
My day has been a daze. I am lost, my life revolved around Chris, I have no idea what to do.
How will I live or breathe without my boy in my life? I will love him forever. He has left one enormous hole in all of our lives.
