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Sunday, 20 September 2015

No. 259. ` Farewell for now.'

So yesterday we said farewell to my darling boy. It was a surreal day where I was carried along on that tsunami wave which dipped in and out of reality and emotions.

I was up early, hoovering and tidying, awaiting family to gather. My brother and his family came down from West Sussex and I also had friends who had traveled down over night to attend. As guests arrived I poured out the malt and we had a small toast to Christopher (hope that was OK my darling?). I was doing fine until the hearse arrived with my darling boy and then I saw our flowers for the first time, I lost it then. Denise had the most amazing flowers made from the siblings, it was a TR7 ( I bet you loved that eh Chris?) It was fantastic and so fitting. I was thrilled to see my cousin Christine and her husband Mike had made it too.

We gathered as a family behind the hearse for the short walk to the church, Christopher's beloved Leyland tractor led the hearse to the church and the Matbro handler stood in the front meadow with it's bucket held high in salute to the one who drove him the most.

I found the whole thing so emotional I could hardly breathe and I walked in first after Christopher with Tam and Tracey holding my hands. Jordan was one of the bearers as was Kevin, Chris's brother. Jem, Chris's closest friend plus Vivian and Peter, other friends, we're also bearers. The church was packed and I just couldn't look at anyone. That was my boy there in that box, this really was time to say goodbye and I couldn't bare it.

Two lovely ladies from the church who knew Chris well read a poem and the reading. I wrote the eulogy which the Vicar read and Kevin read an emotional poem followed by a few words of his own. Chloe had always wanted to sing for her dad, but she wasn't sure if she could do it, so we didn't put it on the order of service. She changed her mind what she wanted to sing on the way home from the airport on Wednesday, she decided she would like to sing 'Wind beneath my wings.'. We downloaded a backing track and the lyrics when we got home and set up her PA equipment in the church on Thursday. She gave the vicar the sign that she could sing during the service and went ahead with Tom in control of setting the backing track going. I can honestly say I have never heard Chloe sing so well. I thought there would be nerves, but there wasn't. She even made grown men cry. (I bet you had a few tears too eh my darling watching over her?) Even the vicar showed signs of emotion when she read some words about Chris, she knew him well too.

Chloe did lose it a bit after, but that was understandable. Everyone said they had never been to such a moving service and that it was a fitting send off for my boy. 

After greeting people outside and thanking them for coming, we returned home for a quick freshen up and then Denise and Harold took Chloe, Tom and myself to the wake at The Camel Centre and yes, there are actual camels there right outside of the window.

The wake was a blur really, with so many people wanting to talk to me. I did find that hard as I would rather hide in the background than be the centre of attention, so I constantly reminded myself that everyone needed to share their love and memories of Chris and for Chris and that was important. The Oates family did a wonderful job of the catering, with plenty to eat for everyone. Kevin set up the slide show that I had prepared and people watched with amusement I think, seeing Chris as a baby and small child as well as a grown man.

Later was the final part of the farewell, the journey to Camborne crematorium. I drove Chloe and Tom there and Tam went with Jordan and Tracey. It was just close family there and it was a very short service, but it still was a very emotional experience and Chloe in particular really broke down, something she needed to do. Tony, from Pendles said he would drop the flowers back to our bungalow for us.

We all as a family were then treated to a meal at a nearby restaurant by Denise and Lucille.

We then traveled back home, the flowers were there to greet us when we got back. The attendance cards were waiting there too and over 200 people attended apart from us family, what a fitting tribute for my boy.

So that was it, the final farewell to my darling boy, (for now anyway my darling, till we meet again.)

This morning life had to carry on. I was up a 5am to take Chloe and Tom to Newquay airport as they had to get back to Brighton. It is more than a hour trip to get there and we left in the dark, hitting patches of fog along the way. On the way back the sun had come up and the mist settled low on the roads and had an ethereal feel.

OK Christopher my darling, you never did tell me how I was supposed to live without you, I guess now is when I really begin to learn. I will love you and miss you always my boy, this was not how it was meant to be. 
Fly free my darling, fly free. ❤️

Saturday, 5 September 2015

No. 247. 'The blog I never wanted to write.'

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.
It is 16 months to the day since Chris's diagnosis.

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.

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.

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.

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.

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.

Thursday, 3 September 2015

No. 246. 'This wretched disease.'

The carers said last night that Chris had developed a small pressure sore in his coccyx area, I was gutted about that. The district nurse won't come out until tomorrow when the air mattress arrives. The carers and I have jiggled around with pillows and positioning, but Chris's positioning is also crucial to him being able to breathe too, so it is hard to get the balance right.

Chloe and Tom went back today, they have a wedding tomorrow and we both felt they should go, plus work beckons for them. We are glad Chloe came home for a few days, she was able to spend some quality time with Chris. She was a little sad he couldn't say I love you properly any more, but we developed hand signals instead. Chris never did get his head around the 'Eye gaze' and being a complete technophobe didn't help. Now he is so weak and sleepy I don't think he could focus his eyes properly if he tried. I have 'Verabally.' on my iPad which helps if I really can't understand him. 

The chest and diaphragm spasms have been happening more frequently and they really scare Chris when they do. I usually dissolve 1/2 a lorazepam in a bit of water and place it under his tongue and this usually works very quickly. He also has diazepam and I gave Chris a morning dose yesterday, but it made him so sleepy. I spoke with our GP and he recommended giving Chris diazepam twice a day along side the Oromorph. I had already talked to Chris and we both felt it is better for him to be sleepy and comfortable than more awake and getting more spasms which scare him, so diazepam twice a day it is along side the Oromorph. Chris woke at 4 am in distress too so I gave him some more Oramorph then which helped.

Chris has also been biting the inside of his mouth which he doesn't know he is doing and I only discovered it doing his mouth care. Oral thrush is being troublesome too, so the GP is prescribing a different fungicidal medicine that will go down his PEG, hopefully that will help.

I get asked quite often how I am and strangely most of the time I'm OK. I feel I am running on auto pilot, getting on with things in my usual clumsy way. Everynow and then the tears flow, which is everyday now. I spend a lot of the day just sitting beside Chris. I'll read to him if he wants, mostly he just wants to sleep. I'll try to reassure him when he gets scared. 

And boy has Chris has been scared a lot to day. He really is struggling to breathe and that really does fighten him. I have been told there is no upper limit to the Oromorph dosage so when he asked for more I gave him another 5 ml. I know the body does get used to it. The GP said to me that I probably feel helpless and I do. To watch someone you love die slowly in such a cruel way is beyond hateful. My heart breaks to watch Chris suffer like this. 

I am sitting here writing this holding Chris's hand. The extra 5ml of Oromorph has kicked in and he is having some kind of sleep.

I don't want to lose my husband believe me I don't, but watching him like this part of me wishes MND would do it's worst and leave him be. How much more will this wretched disease make him suffer?

I hate f*****g MND so much, in fact there has yet to be a curse created that is strong enough to vent my anger or describe my hatred for the vileness that is motor neurone disease.

Tuesday, 1 September 2015

No. 245. 'Stumbling.'

Today has been a difficult day for Chris. He has been getting more spasms and his breathing is that little bit worse again. He did not want to move from the bed this morning, so the carers saw to his needs there. 

I have noticed he has developed a weakening on the side of his face, the same side where he has weaker neck muscles. He has started to drool a little saliva too on that side and his eye weeps, all part of the MND.The GP is coming out this week and we will see what he recommends for that. Everyday he is a little bit worse, today he felt pretty miserable.

His palliative care nurse came this morning and she said to give the Oromorph as needed and he could have a lorazepam along side the diazepam if needed too. One is more fast acting, one longer acting and this will probably help with the spasms a bit. She also said that she will get a prescription prepared for us to keep at home for a driver syringe to administer medication if and when needed. We talked about prognosis and stuff, always a tough conversation.

I asked Chris if he wanted the vicar to come and see him. His faith is very important to him, so I rang her and she came out and spent some time with him. I think it helped him a bit. I think he was in need of some spiritual support.

People say things to me like I am brave, strong, blah, blah, that's not me, believe me I am none of those things. I spend half the day in a stupor and the other half crying. I stumble through Chris's care like I stumble through life, for ever making mistakes. The one blessing is that he is very tolerant of me. If I have ever given the impression that I am some kind of Saint, then that could not be further from the truth. I am one scared, already grieving wife, who is watching the love of her life be taken from her in the most cruelest of ways. I do my best as everyone who has ever been in this position does. It is not a choice, it just is what it is.

So do not ever take from my blog that I am perfect, I am not, nor do I ever wish to be. I just do what 5000 plus others are doing as well at this moment in time here in the UK alone, caring for their loved ones who have MND in the best way they can, each and everyone of us hating this disease with every fibre of our bodies.

No. 244. 'Good versus bad and MND.'

I have heard people say recently that the world is a bad place. I think it has always been a bad place if you look back through history, but it is and always has been, a good place too.

The difference today is that we hear it all. The media etc always concentrates on the bad stuff and rightly so most of the time, it is hard to hide from it in this global, internet based world, plus the good stuff doesn't always make good copy.

I have had bad things happen to me over my life, I guess we all have in some way, but I have been touched much more by love, compassion and friendship, so much so that it has not allowed the bad stuff to control my life.

Recently with Christopher's diagnosis of MND, we all as a family hit rock bottom. As bad things go, as far as we are concerned anyway, this takes some beating. I chose to write a blog right from the beginning of Christopher's diagnosis. It was just for me to start with, as a record. I chose to do it on line as I am rubbish at keeping a diary and losing them. I also felt I owed it to Chris to not forget a single second of what he will have gone through. One day, on a whim, I thought I would share it on Twitter, I thought maybe it might raise some awareness as so many people I know knew nothing about MND and slowly more and more people started to read it. I couldn't understand why at first and even now I question why I bare my soul and our life for others to read about. Although I still do write my blog just for me, I am now aware I probably write it for others too. I have heard from the loveliest people who have or are walking this path also and they say it helps them to know they are not alone in this nightmare. I am saddened that others have to go through this too, but humbled beyond belief when people say such things to me.

I am sure there are people who question why we are so open about this disease, especially on social media, but you have to give in order to receive. By sharing our lives with MND I have come to know some wonderful people and more recently I have had such kind messages sent to me from people I don't even know. Messages full of love and support and prayers for Chris and us as a family.
They don't know us, but mostly we share a common pain, this awful disease MND.

So when people say the world is a bad place, of course it is sometimes, bad things will always happen, but it is a bloody good place too, so although we are living this vile nightmare at the moment, I am thankful to the bottom of my heart to have felt so much goodness and love in our lives. 

Open your heart and the love will find you.