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Tuesday, 29 December 2015

No.270. 'My battle cry.'

What is this thing MND, that turns a body on itself? What makes it relentlessly take away it's own existence by killing it's life force. What makes it so cruel and heartless? It has no compassion, no respite, no reprieve. It's mind never wavers from it's relentless course. To never stop till that last step is trod, that last word spoken, that last swallow choked, that last breath bravely fought. 

Yet in those final hours when it knows it has won, it has yet to defeat that spirit. To gaze into the eyes of the physical self and still see love and fight and passion, it will never take that. The last 'I love yous' that are expressed in so many different ways. It cannot steal that. A touch, a whisper, the gentlest squeeze of your hand, and those eyes that shout out love.

MND, you steal and have stolen so much, forever taken, but you will always be bravely fought. One day you will be defeated, that love and fight lives on beyond your cruel theft and you will be the one to die one day, never doubt that. In the taking of each and every life you have inspired 1000's more to fight back. An army is advancing and your days are numbered. 

Don't ever doubt that for a second. To those left behind when you have done your worst, amongst the grieving and utter loss, the only consolation left to them is that you will meet your own end one day, that MND will be consigned to history books and and we will all rejoice to know that no one will ever be taken by you again.

That will be the day we will have won.

Thursday, 24 December 2015

No 268. Merry Christmas and keep fighting.

I have been dreading Christmas Eve more than anything. It was a time when late at night Chris would come in from midnight mass after he had been working all evening (when the kids were young I couldn't go) and I would grumble at him at yet another Christmas Eve on my own with the kids. We would then open our own stockings full of silly little cheap pressies before we went to bed and then we would snuggle and hug, all grumbles forgotten. We would be woken early even when the kids were quite grown up, to see them open their stockings and then Chris would disappear out to work for an hour before I long for those Christmas Eves again. They weren't perfect story book Christmas Eves, but they were ours.

I miss everything about my boy. I want to hug and hold him so much, something that was denied us in the last few months because of his breathing problems. I want to kiss and cuddle him, talk to him, laugh with him, see his smile, hear his voice, I want him all, I want him back. People tell me he will always be in my heart, but it will never be enough, I want what I can't have, the person, the man, my love, I just want him back.

There are many brave warriors out there still fighting MND. MND has been kinder to some and given them more time, others it chose to take sooner like my Chris. It has nothing to do with how much someone fights this awful disease, I believe it is just random luck as to whether it takes you sooner rather than later. 

As mentioned before Chris feared he would not be here this Christmas, but deep down neither of us believed that he wouldn't be. His MND didn't seem to be progressing fast, it hadn't affected his breathing, he was sure he had more time yet. He did not want to die and although he didn't shout it from the roof tops, he was fighting MND with every fibre of his body.

Chris acknowledged MND and impending death only as little as was needed. Rarely did he admit that MND would end his life early. In his last few weeks he would not discuss funeral arrangements or stuff like that. I knew he wanted to be cremated and have some ashes spread on the farm, I managed to get him to chose one or two hymns, but that was it. 

Chloe had come home to visit Chris in the last week of his life. She and Tom had a wedding to go to on the Friday and Chris insisted that they go back to Brighton and enjoy themselves. He kissed and waved her goodbye and I could tell he was very sad to see her go, but in hindsight I do not think he wanted her to see him die. The vicar came to see him later that day and he said things had changed. I asked what he meant, did he mean as in dying and he said yes. That really upset me, it was the first time he had acknowledged that he was actually dying, possibly close to death and that broke my heart. The next day he asked for his sister to visit. He did not want her to leave, he told her he felt different, again he felt he was dying. I asked him if he was still fighting, did he want to give up? he said he was still fighting to live more than anything.

So what I am trying to say is that a fighting spirit is important, never giving up is important, but if MND decides to take you sooner rather than later, it does not mean you did not fight enough. MND does what it wants, regardless of how much you fight. Fighting it while you are alive makes living with it a little more bearable, makes you feel a little more in control, even if the reality is so different. It is important to be angry with it, to put two fingers up to it, it helps our intellect believe we can win. It gives us hope.

Meanwhile our lives go on, they have to. I am going through the motions, but I am thoroughly enjoying having my youngest home, though she sadly goes back on the 27th. We have had fun doing mummy/daughter stuff, doing baking and Christmas preps together. It has been good.

Tomorrow a place will be laid for my darling boy, we will raise more than a glass or two to him and we will pray that 2016 will bring a much needed cure for all those still living with MND. May MND show some benevolence and allow them to live till that day comes.

And to all those who have lost someone they love to MND, especially those I have gotten to know, I send you so much love and hugs. If MND had never entered our lives I would never have gotten to know you, but your love and support has been so very much appreciated. We will face 2016 with part of us missing, but we will all be here for each other. My life has been made richer for knowing all those who have been touched by this hideous disease.

Merry Christmas and love to everyone.

Wednesday, 16 December 2015

No 267. 'Welcome distraction.'

I feel like it has been a while since I wrote a blog, but not that long in reality. Life goes on as it must.
Going to the charity shop a couple of mornings a week has been going well, the ladies are a nice bunch and they make me laugh. I prefer to work behind the scenes for now though, I don't know why, but I can't face working in the shop yet, but the manager is fine with that.

One day blends into the next with grief swooping in when it feels like it. It hit badly one day last week and I spent a long while chatting on line with Chloe. I had been thinking about getting a new puppy for a while, Chris left this huge hole in my life and although of course he can never be replaced, especially by a dog, I just felt this need. I wasn't sure if the timing was right as I still have two very old dogs, but I had a feeling a new puppy would be a good distraction for me in many ways.

On impulse later, I checked out a web site I had been following for a while. I saw some cross breed puppies for sale in Falmouth. I took the plunge and gave the breeders a call. Long story short I fell in love with a little boy pup and picked him up the following week. Chloe helped me name him and we called him Toby. He has been with me almost a week and is nearly 10 weeks old. He is a little handful full of mischief at times, but he is also very bright and very cute. He should be smallish when fully grown which is what I wanted. He really has distracted me and giving him cuddles is very comforting. I am not sure what Chris would say at me getting another dog, especially if he saw what he did to the carpet in the lounge earlier, but I hope he is watching from afar and approving of this new little life who is a distraction for us all.

Chloe came home from Brighton last week with Tom and it was so lovely to see her again. She has been terribly home sick this time, especially now and mummy hugs were very much needed by both of us. Chloe and Tom adore little Toby as does Tam. The older dogs are rather more blasé about his presence.

We are busy planning a nice Christmas and have a family get together to look forward to on Sunday. I know Chris will be here in spirit and will be happy that we are having a proper Christmas, I do know he would have wanted that.

I went out to a Christmas lunch with some friends in the village too this week. Part of me did not want to go at first, but I was so touched that they asked me that I said yes and was so glad I did, we had a lovely time.

I miss many things about Chris not being here of course, one of them being able to tell him things. I would chatter away about what I had been up to and he would quietly listen, I do miss those simple things so much. I still chatter away, whether he listens or not I have no idea, but I would like to think he does.

It is hard to believe it is just over 3 months now since Chris died. The missing doesn't go away or the hurting, but I suppose you do learn to live with it. There is no other choice really is there?

Anyway, there are a few more firsts to face soon with Christmas looming, but we will face them all together like we always do, as a family.

Merry Christmas Christopher my darling, I love you and miss you always. The fight continues.xxxxx

(Last Christmas, precious memories.)

Saturday, 28 November 2015

No. 265. `Time line to diagnosis.`

There are a couple of questions I get asked about Chris all the time which are how long did he have it and what were the first symptoms and although I have written about this before, I will list a chronological timeline of his experience with MND, though of course everyone`s is different.

September 2013
In September 2013 we took Chloe up to Brighton with all her belongings as she was starting uni. Her student flat was at the top of a Georgian building four flights up. Chris carried all her many, many boxes up to the top without a flinch, unlike his rather unfit wife. I think he had a very slight limp, but it certainly wasn't causing him any problems.

November 2013
In November 2013 Chris drove him and myself up to Brighton to visit Chloe for a weekend. While we were there Chloe and I noticed Chris was lagging behind us and we teased him a bit to keep up. He just joked he was window shopping, again we never thought much more of it.

Around this time he had started to get some really severe stomach cramps and cramps in the back of his thighs, especially at night, they were really painful and he would wake up in agony.

December 2013
Over the next month a couple of the men on the farm kept asking Chris what he had done to his leg and the limp had gotten a little bit worse. Around this time we had a water leak on the farm, we didn't know where it was so I had the job of sitting by the water meter while Chris walked the farm turning off the different stop taps along the way to see if we could trace it. While I was grumbling at having to sit in a cold field for an hour or more, I was also worrying a little about Chris as his limp did seem to be slowing him down these days. He did however walk the whole of the farm which is very hilly, testament to his existing physical fitness and determination I think.

January 2014
We attended a family funeral in early January 2014 I think and all of his cousins noticed the limp and were asking what he had done. He had also mentioned that his hands felt a bit funny, he would shake them as they felt they weren`t as strong. He was finding using tools like spanners a little difficult.

February 2014
At the beginning of February 2014, late one Sunday evening, someone came to the door to say that there were sheep out on the road. The rams were kept with us and they have gotten through the hedge. Chris hadn't long come in, but he dressed up again and went out to find them. A good while later he came back in quite distressed. He said he thought he was going to collapse on the drive as his legs felt like jelly, it really frightened him.

I had been nagging him for quite a while to go and see the doctor, but he kept making excuses that he was too busy, this time though he knew he needed to go.

The next day I made an appointment for him to see the doctor later in the week. When he went I told him to make sure he told the doctor all of the things he had been experiencing like the limp, cramps and weakness in his hands. When he came home he said the doctor told him he had a dropped foot and she arranged for him to have a blood test to check his muscle function and was referring him to a neurologist.

The hairs stood up on the back of my neck, I had a friend in the US who was a huge fan of Jason Becker, she had told me about him a while back and about how he had ALS and to look him up on line, so I did. I didn't know what ALS was at first, but after reading about him I realised it was the same as MND. His first symptoms were exactly what Chris was getting and I got really scared. I didn't share my fears with him though, I just tried to be positive that hopefully they could find out what was wrong and make him better.

A couple of weeks later Chris had the results of the blood tests and the GP said she was referring him to see a rheumatologist instead as the tests showed signs of muscle decomposition, CK levels were high, I had no idea what that meant, but I thought that I must have made a mistake, maybe he had something else like some kind of other muscle problem... Phew, so we waited for that appointment to come through. Chris had started to have a couple of small choking episodes too when eating cake, we hoped that was nothing.

March 2014
In March an appointment came through for Chris to see the rheumatologist at Treliske, meanwhile I had been looking up Chris's symptoms on line. His speech was also a little slurry now and he was having these strange twitches in his neck. I was not happy as all these symptoms pointed to MND and maybe muscular dystrophy, but still I said nothing to Chris.
The rheumatologist gave him a thorough examination and said she could see festiculations, the twitching, throughout his body. She referred him for a spinal body scan, nerve function and conduction tests and a possible muscle biopsy.

During the Easter holidays Chris drove Chloe and I up to Newquay airport as we were going to visit a friend and attend a rock concert. Chris was finding it hard to lift his feet off the pedals and he was more tired than usual, though it was always a running joke that Chris was always tired, we just put that down to working long hours.

April 2014
He had an appointment come through to see the rheumatologist again for May 23rd. Meanwhile in April Chris had the MRI closely followed by the nerve function and conduction tests. They weren't fun as it involved sticking needles in various parts of his body, including his tongue and having electricity passed down them to see how the nerves reacted. The doctor doing this said the results of these tests were abnormal, the MRI was clear, so trapped nerves being the cause were ruled out.

Chris was still working out on the farm at this time, but I was very worried about him as he had fallen over a couple of times when in with the cattle and by now walking was becoming very hard for him. I would see him coming up the yard and he looked like someone had strapped really heavy weights to his legs, walking was a real effort.

Another appointment had come through for the 21st of May, but this time to see the neurologist, now I really was panicking and I was slowly drip feeding a little info to Chris about the various things that could be wrong with him. I had also started voicing my fears to Chris's family and our older children.

May 2014
At the end of  April Chris had a phone call to say he was to see the neurologist on May 5th at 8am. The fact that this was a bank holiday didn't bode well. It was here that Chris was diagnosed with MND. One of the worst days of our lives.

The rest as they say is history and is all charted in my blog. We had hoped at first that it would progress slowly, but that was not to be and he died exactly 16 months from diagnosis and almost 2 years from the first sign of a limp.

Sunday, 25 October 2015

No 279. `Update.`

I guess the final end to Chris`s story is that the farm was officially sold on October 8th 2015. I am glad in a way he was not here to witness the finality of it all. It was heartbreaking enough to see the stock and machinery be sold.

Although I am curious and in a way excited to see the changes that will be made to the farm, as the new owner is investing much in upgrading the house and yard buildings, I again think Chris would have found that very hard.

He would have been pleased to see a new herd of cattle though now grazing the fields of Gwarth-an-drea.

You stole so much MND, not just the love of my life. I will hate you forever.

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.

Monday, 31 August 2015

No. 243. 'To the edge and back.'

This hateful disease likes to take you to the edge and back so many times.....and leave you dangling with a fear you have never felt before.

Chris has been deteriorating daily at a much faster rate for the past month now. Everyday he is that bit worse, especially his breathing..oh that scares me the most, hearing him struggle to breathe. It is not a bubbly breath accompanied by a cough, just a weak inhalation and expiration, a constant, laboured grunt. It is one that spasms and frightens him so much and now it seems it his diaphragm that is giving him spasms. A dissolved lorazepam in a drop of water placed under the tongue seems to help with that, but it is still scary for him.

Yesterday was the first day Chris did not want to get up. He is so very weak now. Yesterday he truly scared me. Up till now whenever I ask him if he is OK he has said yes, yesterday he said he didn't feel too good.

He wanted to see his sister so I gave her a call. I updated Chloe as I was a little scared we were losing him. I think I must have really frightened her as she wanted to come home, she was visiting her boyfriend's family. They kindly sorted the insurance out for Tom to drive the car and they left from Surrey straight away. Chloe literally turned up in the clothes she was wearing and nothing else! Knowing she was coming home perked Chris up no end though. It was just what he needed.

The carers came in the morning and didn't pull Chris around too much. They spent the day trying to get the district nurses to come out with a blow up ripple mattress, which they did in the afternoon. Two of them came, one blew it up. They then left and said the carers could put it in later, not quite sure why they couldn't do it. They didn't check his pressure areas or anything. 

My daughter-in-law Tracey stayed with me during the day, I confess I spent most of it holding Chris's hand and crying while he slept. Around 5ish Chris said he needed the loo, Tracy helped me with the hoist and thankfully he managed to go. I was a little concerned though as it looks like he is developing a pressure sore on his bottom!! I wasn't happy to see that. I applied some Conotrane cream. He also wanted a wash and to do his teeth and then I teased him as I realised he wanted to look nice for Chloe. While Chris was on the loo Tracey put the blow up mattress on his bed.

When the carers came I told them to check Chris which they did. They said they would bring some special stuff in the morning that is like a second skin to protect him. How typical these things happen on a bank holiday weekend. This air mattress isn't likely to get here for a couple of days yet. They made Chris comfortable and also used those lollipop things to freshen his mouth.

Chloe arrived home and Chris was so pleased to see her, it really made him smile.

Chris has always written a diary since he was a child. It isn't full of heart felt emotions, just what happened during the day. For the first time he asked me to write his diary for him. Even that is too much of an effort for him now.

I wake so many times in the night and panic, is he still here, is he still breathing? I am on edge. How long does Chris have? who knows. Sometimes it feels like hours, other times days, maybe still weeks yet, you can never tell with this beast of a disease. All I know is the progression is now relentless and it is scaring the crap out of me.

One minute I am praying that my boy doesn't leave me and then I look at him sleep with his laboured breath and I just want his suffering to be ended. Such a contradiction of emotions.

Then I think, 'Let's just get through this, one day at a time,'.

Lastly though, I asked my Facebook friends to say a prayer for us yesterday and they did in abundance. I don't have much of a faith these days, but it was so heart warming and comforting to feel so much love and support from them. Thank you to all of them.

Saturday, 29 August 2015

No. 243. 'A light bulb moment.'

OK, Chris hasn't been so good today. I gave him his Oromorph around 2.30pm as usual. This helps his breathing by relaxing him. He was also thirsty so I put a glass full of water down his PEG too.

Not long after, he started one of his mucous episodes, which involves him choking then gagging before getting rid of the build up. I started using suction on him and as sometimes happens the gagging caused him to vomit. He went on to bring up the drink I had given him and quite possibly the Oromorph too. I hate it when he vomits, because he usually also aspirates some of it and that causes more choking. Anyway, we dealt with this as we do everyday and after about 30 minutes he settled down. I was reluctant to give him more Oromorph just in case he had absorbed the earlier dose.

Just before the carers came for their evening visit Chris couldn't catch his breath, he started panicking and asked me to dial 999. I told him the ambulance crew couldn't do anything and to try cough assist and suction first. This cleared some more mucous. I suddenly thought that maybe Chris did miss a dose of Oromorph, I calmed Chris down and said he was probably struggling and panicking because he needed some medicine. As soon as the carers got him into bed I gave him his Oromorph and diazepam. Within half an hour Chris had relaxed and calmed down. The medication doesn't suddenly make him breathe better, but it does calm and relax him and takes the fear away. 

Right, so that was a big 'light bulb' moment. I shall know now the next time Chris panics when he can't catch his breath to give him Oromorph. The GP said the dose could be upped as times goes on too. It may be the only thing that can help him, but at least it works.

Friday, 28 August 2015

No. 242.'Beds and mattresses.'

Well the original hospital bed delivered was deemed too short by the caring supervisor and after numerous phone calls from her a longer bed was delivered the following day, which is perfect for Chris now. Hats off to her for getting the job done,

I swapped the recliner for the larger of our two sofas and I managed to sleep better. Because the hospital bed will raise up and down we can match it to the sofa height and I push it next to the bed when I go to sleep. It means Chris can still hold my hand, which is more security for him than anything as he shakes it to wake me up if he needs anything. I think my clambering onto the sofa and out again has proved a source of entainment for him at least. 

When Chris sleeps during the day now he tilts the chair back to support his neck and puts his legs on his bed and then into his pressure boots, his heels were getting worryingly sore just resting on the wheelchair foot rests. I have been a little worried about his bottom, so we added a Memeaflex pad that he had for his manual wheelchair. Many people experienced with MND have said to me he should have an air mattress and the carers felts so too as he is spending so many more hours in bed now.

The district nurses, by their own admission, are not very good at getting back to you when messages are left. I did phone them yesterday about Chris having an air mattress, but heard nothing. Now bearing in mind that they have popped in a few times to see Chris for a couple of minutes each time. Only once about 3 weeks ago did any of them check his pressure areas. They seem to trust me to tell them all is OK. The physio phoned while the carers were here to ask how the new hoist sling was, I said that it hadn't arrived yet, but the carers had managed to borrowed one till it arrives. The carer spoke to her and then went on to say that Chris needed an air bed too. They have said they can see a difference in Chris in just the week that they have been visiting him. A while later the physio phoned to say that the district nurses said Chris didn't need an air bed yet, but they would order one anyway, it will be here next week. Now that annoyed me somewhat as they hardly see him and aren't really in a position to say whether or not he needs one now. The way his MND has progressed this past month, it is hard for me to keep up let alone those who see him very briefly. The carers were a little peeved too and to be fair I trust their judgment as they care for Chris for a couple of hours a day and see hands on what his needs are. The new mattress is on order so I guess that is the main thing. I am not sure the district nurses realise how quickly this disease can change. I know they probably have little experience of MND too, but that is beside the point.

Chris seems to sleep most of the day now, though he does perk up a bit if people visit. The morning seems to be taken up with the carers as they don't come till around 10.30am, he is worn out after that. He never was a chatty man and certainly not about his feelings. Whenever I ask him how he is he just says OK, even though of course he isn't. I guess he isn't going to change the man he is just because he has this horrible disease. I can see how fed up he is though. The tears fall more frequently for me these days, not for myself, but for Chris. It is the cruelest thing what this disease is doing to him, cruel beyond belief. I feel sometimes he is losing the will and fight to live and who could blame him?

He needed the fan on him to help him breathe last night. Everyday he seems a little bit worse. He is just exhausted by it all. Everything, especially being hoisted around and especially by me when I have to do it on my own, tires him. I never considered Chris to be a big man, but even his legs seem really heavy when I have to lift them, because they are a dead weight now.

Oh and the new hoist sling? That never turned up.

I can't let myself think too far ahead because the future is a scary place.

No. 241. 'The ICB money, not a bottomless pit.'

The Ice Bucket Challenge of 2014 was a phenomenon for sure, over $220 million dollars was raised world wide. To those who felt it was a waste of time, believe me it wasn't. That money is funding vital research into a cure, research that was unaffordable till last year. It gave those with MND hope, something tangible to hold onto.

I guess it was a little optimistic to think that it would take off again as it did last year and I know many did it without having a clue as to why, but for one month in 2014, MND/ALS was heard of, was understood, millions of pounds was raised, £7 million here in the UK alone.

In the U.S they have vowed to do the IBC every August until there is a cure, but with out something else as extraordinary as what happened last year, I fear the ICB will be going for many, many years yet and there will be many more people still losing their lives to this most vile and cruel of diseases. 

Last years IBC was a viral phenomenum, but like many viruses, they mutate and lose there potency. I wish many more would do the challenge this year and I think the bad weather we have had hasn't helped, but it would have given us hope again to see it take off like it did.

There is not a bottomless pot to fund research and that IBC money will run out.

Meanwhile I watch my husband die a little more everyday, he can no longer eat, drink, walk and can barely talk, but the scariest of all is his chest muscles are failing and watching him gasp for breath, well that is too much to bare at times.

It you would like to donate anyway, please text ICED55 then the amount, eg £5 to 70070. 

Thanks for reading.

Wednesday, 26 August 2015

No, 240. 'The hospital bed.'

Well, after the carers phoning to chase up the hospital bed and being told there wasn't one on order and then the doctor coming out to see Chris and also chasing it up, at 5pm a bed turns up. Coincidence? I have no idea, but at least it is here. It fits nicely in the space we made for it in the lounge.

I was a little worried it would be too short with Chris having to sit up and having wear his memory foam boots, but it seemed he just fitted. However at 2am he woke me to say his feet were really hot and uncomfortable. It seems he had slipped down a fraction and his feet were pushing against the board.

So...I fetched my tool basket and unscrewed the two boards. Thankfully they were only held on with four screws. The boots were then able to hang over the edge of the mattress by a couple of inches and this made all the difference to him. He was very comfortable otherwise.

I slept in the recliner chair. I had some memory foam pads which made the seat more comfortable. It wasn't too bad, being short is an advantage sometimes. Because the bed could be lowered it also meant I could lay my head right next to Chris and hold hands, so that is great.

Chris's day consists of mostly sleeping now in between the odd mucous episode and a toilet break. The GP said to up the Oromorph to 5mls to help relax him a bit as he gets scared sometimes with his breathing. He perks up a bit during the evening and manages to watch a couple of his favourite programmes on Sky+.

I thought he would be more upset about being in a hospital bed, but he is fine about it. He isn't so far away from me when I am up and about which is good too. He still gets in his wheelchair during the day.

I contacted Jon from Derriford and asked them if they could collect the NIV unit so that someone else could have it and he said they can arrange a courier. That is a relief. Chris is meant to go up there in September, but Jon agreed that there was no need now as the palliative care team are making sure he is comfortable with medication etc. He will hold onto the cough assist and suction unit.

Oh well, life with MND moves on a little bit more.

Tuesday, 25 August 2015

No. 239. 'Another poem.'

(This does not mean the end is near by any means, these are just the fears that hit me when I wake and are in my dreams.)

You sleep a sleep of laboured breath,
As I lay and weep and fear your death.

I want and want for you to stay,
To love me still for many a day. 

Yet I am torn to watch you slowly die,
You are too tired to weep, too tired to cry.

It is too cruel, to watch my boy,
Be sapped of life, be sapped of joy.

Stay by my side, I hear me say,
Yet be at peace I hear me pray.

Yet you hold my hand and smile your smile,
And I hold it tight and stay while.

So I wish and wish for you to be,
Well again and stay with me.

Where we can walk along dappled lanes,
And laugh and dance and love again.

Yet it cannot be, life has dealt it's cards,
When that day it comes, it will be so hard.

So remember my boy, I will love you for ever.
I will cherish the time we have left together.

Be the time be long or the time be short,
Be sure it is a battle you have bravely faught.

Sunday, 23 August 2015

No. 238. 'So helpless, so scared.'

My blogs these days seem to be filled with bad stuff, but unfortunately this is our reality.

The farm sale went well in spite of the pouring rain and will go a long way to settle farm loans etc before the partnership is fully dissolved. There was much praise about how well the machinery was maintained and that is down in no small part, to Christopher, who looked after the machinery meticulously, as well as the cattle. His beloved Nuffield tractor has gone to a good home, where the new owner will cherish it and take it to shows and rally's. It has served the farm well for over 40 years.

These past few weeks Chris's MND seems to have progressed at breakneck speed. Although he still has some use in his hands everything else seem to be failing fast. The most scariest of all are the chest muscles.

My boy is struggling to breathe more and more each day, plus yesterday he seemed unable to support his neck properly. During the day tilting his wheelchair back a bit helps, but at night it is trickier as he needs to sit up right. The carers last night did their best to arrange the pillows to support his head, but it still dropped forward during the night. The fear in his face when on top of all of this he starts to gag on mucous is heartbreaking to see and as much as I adore and love my darling boy, part of me wishes this could end for him. 

I feel so helpless, so scared, so drained, so heartbroken, so angry at this vile, cruel, evil disease.

We must find a cure one day we must.

Friday, 21 August 2015

No. 237. 'Locked in, locked out.'

Locked in, locked out
Can't drink, can't eat.

Locked in, locked out.
Can't shout, can't speak.

Locked in, locked out.
Can't dance, can't sing.

Locked in, locked out.
Can't hold, can't cling.

Locked in, locked out.
Can't walk, can't breathe.

Locked in, locked out.
Can't die, can't leave.

Locked in, locked out 
Can't hope, can't fight.

Locked in, locked out......

Locked out.............

No. 236. 'Feeling miserable.'

OK, having carers helping out is great I guess, I can't quite relax with them here yet, but I expect we will get used to it. They don't do things a 100% as I would do them, but that's OK, it's nothing major. The main supervisor came as one of the carers and they were both really having problems getting Chris dressed too. She said he needed a different type of hoist harness, one where the legs are strapped separately. She tried really hard to get hold of someone who could help with getting one urgently, but I'm not sure if she was successful. At least it is not just me who has problems.

The carers come morning and evening, but that doesn't mean Chris doesn't need to use the hoist in between times. He often needs the loo mid afternoon, so I have to do that by myself, sometimes one of the boys are around who can help lift Chris, but other times like today, there is no one. I manage, but it is a struggle and I found myself getting pretty tearful as I felt useless, but my tears were mainly for Chris, to see him so dependent in every way, at times I can't bare it. It is hard work too, I won't lie, but we get there in the end.

The Script Easy advice nurse has sent down some samples of other penile sheaths for Chris to try, one is designed especially for wheelchair users. He is going to give them a try to see if they perform better than the Convene ones. Too long winded to explain here, but the problems are caused by gravity and back flow.

Chris has been feeling pretty miserable today. His breathing problems, the mucous episodes, having strangers help to get him washed and dressed, me having to tend to his most intimate needs, he is just miserable and I don't blame him. He said at times that he has had enough. I would think anyone would feel like that in his position. 

Chris can't get to the sale tomorrow as the weather is going to be bad and our car won't get into the field. The damp weather seems to play havoc with his breathing now too. We aren't entirely sure now that he could even get in the passenger seat of a 4x4 as he can't support his own weight at all. All this adds to things.

I wish I could make him better, I wish I knew how to make him feel better. It is draining for both of us.

Wednesday, 19 August 2015

No. 235 'Everything changes.'

What a strange week it has been. The lorries have been up and down the drive collecting the cattle that have been sold. The boys have been busy too getting all the machinery ship shape for the sale. Chris needed to get out and watch some of the cattle go, his way of dealing with things I suppose.

Tam and Karl came back from holiday so I have some extra help, though I have been coping OK with the hoist and Chris, it's just a bit tiring.

After being told on Monday that a care package couldn't be found, my daughter-in-law, who is a carer had put a post on Face Book about how disgusted she was, this inadvertently got the ball rolling. Her boss read the post and contacted Tracey and said she would see what she could do. Next thing Tracey told me that the company she works for have won the contract and will start the next day (today). I then had a call from Chris's palliative care nurse to say that company had won the bid for Chris's care package and I also had a phone call from the care company itself. We were a bit shell shocked and had no idea things would happen so fast.

Chris' s sister Lucille came down too yesterday with his niece, her husband and family. They live up north, so it was lovely for Chris to catch up with them.

Chris was very nervous this morning, he had two male carers assigned to him which helped. They couldn't come till 10.20am though. Ironically Chris's Convene sheath off when it shouldn't have at about 7am, so I had to get Chris up to wash and change him and he also wanted the loo. After changing the bed I put him back to bed. The carers were great and Chris was fine with them. 

Later in the day though Chris's second Convene sheath came off too which meant me having to change him again. These episodes do upset him, he is a proud man and it is really annoying that this keeps happening. The company sent some special wipes down a couple of weeks ago that are really sticky and I follow the instructions to the letter, but we still have problems with them. One of the carers suggested contacting the company that supply them and getting a different type which are better.

I had left a message with the district nurse earlier asking some questions, one got back to me later in the day. She gave me the number to ring about the Convene problems. I asked about disposable bed mats, I had some Huggies ones given to me, and wondered if they provided something similar and was told no, I also asked for advice because Chris was waking me in the night as he had pain in his coccyx area. He sleeps sitting upright and it is quite hard to push him slightly over to one side. We still had a  Memaflex cushion here that went in his manual wheelchair and I asked if that would help. The nurse said give it a try, other than that she wasn't very helpful, just said they would try and think of something else, if that didn't work.

Chris watched his brother taking some of the machinery up to the sale field, seeing the cattle crush and feeders going really hit home to him. I told him that it was OK to cry, but he said he couldn't because if he did his own tears would literally make him choke. That really upset me, to think he is holding all that emotion in because it would make him choke, it broke my heart in fact.

The carers came at 7pm and got Chris ready for bed. So far so good. Chloe and I snuggled up with him in bed after to watch 'The Great British Bake off.' That was nice.

Chris slipped off the Memaflex cushion, then I remembered I still had a large piece of memory foam so I hoisted him up and sat him on that. He didn't get any pain so I guess it did the trick.

Chloe's visit truly has been a flying one as she is flying back to Gatwick tomorrow (Thursday) where Tom will meet her. She spent a lot of lovey time with her dad though which is the main thing

I sometimes think I must seem quite hard to some people, I rarely allow myself to cry, I learnt to protect myself from that kind of emotional pain a long time ago. I do sometimes of course, but I try hard not to. People say I am brave, I am not, we are not, we just live each day with this disease, one day at a time. We have no choice other than to get on with it. It is called survival, not bravery.

I hate and despise MND with a vengeance. Why is it so greedy, so gluttonous? It is always wanting more. I truly believe though that a cure will be found, not soon enough for the likes of Chris, but one day, please Dear God, yes one day.

Tuesday, 18 August 2015

No. 234. 'Never enough.'

I find the nights so scary now, listening to Chris struggle with his breathing. A few times last night he woke me to stick more pillows behind him as he couldn't breathe.

His DNR came yesterday, the reason given was MND with progressive pulmonary failure, it hit home seeing it in writing. It makes me so scared.

I feel so helpless, everyone is doing all they can, but it will never be enough.

Monday, 17 August 2015

No.233. 'No time for melancholy'

Well, I seem to be coping OK caring for Chris and using the hoist. I have had help from family, but once or twice everyone was at work so we coped on our own.

This morning for example, I hoisted Chris from the bed to the shower seat where he used the loo, then shaved etc. I then wheeled him to have a shower, washed him and then wheeled him back to the bed room. We then thought the easiest way to get his trousers on would be in bed, so I hoisted him back into bed. Every time I turned him though to pull up his pants, then trousers, (he has to stay sitting up or he can't breathe) he slipped down the bed. Chris was going to have a nap, but it was easier to get him back in his wheelchair rather than hoist him back up the bed. Using the hoist as such is no problem, moving it around is hard work, I don't have to push it far though so we manage.

I telephoned Chris's palliative care nurse to ask her to order a hospital bed for Chris. She told me that she hasn't been able to find a care package for Chris yet? What does that mean? It sounds like she is going to buy something in a store and it is out of stock. Is this because Chris qualifies for continuing care and therefore the NHS pays? Would it be different if we were paying privately? I think maybe it would. I am coping fine, I have family to help, but what if I was alone with no help? How can you not find a care package? 

As I said we are coping, but some help would give me a break now and then. 

I also asked if the lorazepam could be prescribed in liquid form and if Oramorph would make Chris constipated? Yes to the second question, so that explains why we have had to deal with that little problem. The GP phoned and they have ordered a liquid form of diazapam as Chris was even choking  on the lorazapam tablet that goes under the tongue and they don't do that in liquid form. 

Angela then explained that Oromorph relaxes everything and slows things down like the bowel. It also dries things up and although Chris still has mucous build ups, they have been a lot less and he hasn't had to use the cough assist as much. He is sleeping better too, so I guess the pros out weigh the negatives on that one.

The physio popped in this morning to see how things were. Chris's shoulder has been hurting a while, I think from trying to push himself up a while back. She said he had pulled a tendon in his shoulder and to rest it. Well he is now anyway as he doesn't have the strength to push himself up any more.

Chris needed the loo again and Kevin was here to help me with Chris's trousers and moving him, but then he had to leave. I used the hoist to get Chris back into his wheelchair, but we had to leave the trousers and pants so Chris's bottom half got wrapped up like a chrisalis in towels and blankets. Needs must I guess.

An awful lot of our cattle went today as part of the running down of the farm business. Chris wanted to watch the last load go today. It is hard for him, 201 cattle altogether were left, cows and calves, heifers, steers and bulls. A life time of vocation disappearing. We have our final machinery sale on Saturday and then apart from winding down with all the office side that will be it, we will be on our own, independent. The farm will continue on with new blood, new life, new ideas and someone else will learn to love Gwarth-an-drea as much as we do, c'est la vie I guess. I know one thing, we are forever thankful to Chris's sister and husband for helping us through all this, I am not sure we would have coped on our own.

Tam and Karl will be home this evening full of holiday tales and photographs and Chleo will be home tomorrow. Chris is having some friends visit this evening too, there will be no time for melancholy.

Our lives have changed so much these past 15 months, you just never know what is around the corner. You have a lot to answer for MND.

Friday, 14 August 2015

No. 232' Catching my breath.'

Oh my goodness, the days are so up and down at the moment and I am quite exhausted. I do not know what I would have done without the practical support of Jordan, Tracey and Kevin. Chris was a lot perkier this morning. He lay in bed until the DN came as he didn't want to use the loo so had no rush to get up. When she arrived she checked his pressure areas and all are OK, she advised about getting Chris to tilt slightly either way to ease pressure on his  buttocks and said that if he stayed in bed all day every day, he would need a hospital bed with a proper mattress. This made Chris want to get up as he is adamant that he doesn't want a hospital bed.

Chris's sister stayed last night, it always cheers Chris up when she is here, after his second dose of Oromorph though he was totally zonked out for most of the day. The hoist turned up in the morning and in the afternoon Chris needed the loo, so Tracey came over to show me how to use it. Talk about a learning curve, I can see why you have to have two people to use it and for the life of me I cannot see how you pull pants and trousers up and down while using it. After he had finished on the loo it was around 5pm and we thought it best to get him into bed as it would save him getting hoisted around again later. Getting him into bed worked OK and we had raised the bed earlier with some feet raisers. The physio also left out a slider sheet for us to collect and that helped a bit, though that wasn't with out it's problems, because Chris has to be put into bed sitting up and he nearly slid off the end of the bed, like I said, a steep learning curve!. I am certainly going to think of a way to preserve his dignity though, because being hoisted around with your trousers down is somewhat exposing!!

However I was beginning to see quite clearly how much easier things would be with a hospital bed. We have a very large and spacious lounge and I have managed to persuade Chris to have a hospital bed put in there. Our bed is two single beds put together so we could also put my bed down there. That way he could see me getting on with stuff in the kitchen etc and I could keep an eye on him easier. The bed would also have a specialist mattress to help with pressure relief, so I will phone Angela on Monday and see if she can get one organised. Of course Chris could still get up and use his wheelchair if he wanted. The changes the past week alone are hard for both of us to get our heads around.

I also had a honest chat with Chloe today. I explained that her dad's MND was progressing quite fast at the moment and if it continued at this rate then there was a possibily that we could lose him sooner than we hoped. I also said though that the progression could plateau for a while and could slow things down for a bit, we just didn't know. She understood what I was trying to say. I have always been honest with our kids, I did not want to keep her in the dark about things, she said when she comes home next week that she wanted to help me with his everyday care, I said of course, he would love that. There have been so many tough conversations this week.

Tracy, Chris's MND nurse phoned today for her telephone consultation. She was helpful as always and we talked things through. She talked a bit more about how the end might be and how most people just go to sleep and don't wake up, that was reassuring in a weird kind of way, she discussed with us other stuff relating to that too. I feel quite numb about it all really.

Caring for some one this dependent is a full time job. The carers have still not been sorted and I am so  relieved I have family to help. It is tiring, it is all consuming, but I don't begrudge a minute of it caring for my darling boy. He rarely complains or moans which is amazing as he is so dependent on me and can do so little now. These days he has simple pleasures and they are mainly watching his favourite TV programmes, that is when he isn't sleeping.

We have decided that Chris is only going to have Oromorph first thing in the morning and last thing at night, there doesn't seem much point in him sleeping all day because of it.

I haven't felt like cooking for myself so Jordan and Tracey went to get some fish and chips for me and we ate them together. We had to sit in the dining room and leave Chris in the bedroom as the smells make him feel sick. It did give me a chance to catch my breath though and when I went back into Chris he had nodded off again.

Oh well, bed time routine now and then a welcome sleep beckons.

Thursday, 13 August 2015

No. 231. 'Not so good.'

In the moment thoughts.

My dear Chris is so tired this morning. His breathing woke me a few times in the night. He said this morning that he wished he had taken another lorazepam earlier to help him sleep, so I suggested that we get him washed and dressed etc, but then get back in bed. I have set up his feed on the night pump and given him half a tablet and hopefully he will be able to get some sleep. I was supposed to be going to the dentist this afternoon for a check up, but I have cancelled it. Denise, Christopher's sister was coming down to look after him, but I don't want to leave him. 

Chloe is flying home from Gatwick next week to see us. It isn't much dearer than the train and a damn sight quicker. She will travel two days and be home one and a bit, but I know it will perk Chris up no end. Denise will pick her up from Newquay and Tracey will take her back. Thank the Lord for our wonderful family. She shed a few tears for her dad today, I am a little worried about him.

Chris has always recently napped during the day in his wheelchair, so it is strange with him being in bed, I find myself checking on him constantly, I can't settle, I feel on edge. I will be so glad when Tam and Karl are back on Monday. They have been out of contact, so they will see a difference in Chris.

One of Chris's closest friends visited today, it really cheered him up to catch up. He is still so very tired though. Some fancy foot things turned up too that I ordered, I am hoping the local MNDA branch will help with the cost, they are just perfect though, just what I have been looking for for him.

He decided he wanted to try the Oromorph, so Kevin has got to pick it up for me. 

The is the first time Chris has stayed in bed all day. We have held back on the cough assist unless it gets absolutely necessary as that is so tiring too. My poor boy, this is just too cruel.

Wednesday, 12 August 2015

No. 230. `That conversation.`

This may be a difficult blog for some to read and I am sure some wonder why or how I can write about it. Firstly this is my diary, I just choose to share it, firstly to raise awareness and there would certainly be no point in shirking from sharing the tough stuff. This is the reality of MND for everyone who has it, some sooner rather than later, but with no cure, this is it. Secondly, I write things down as I want to remember everything, knowing what this disease does to someone should never be forgotten. Thirdly, there are time for tears, sadness and mourning what should have been and we have had our fair share of those moments lately and there is time for this, for me to step outside of myself, to be matter of fact and to purge myself of the days thoughts.

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 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.`

Tuesday, 11 August 2015

No. 229. 'Feeling scared.'

I was woken at 4am by Chris, he was really struggling to breathe and asked me to dial 999. The Rapid Response from Helston came quite quick. They checked his SATS and they were 92%. I told them not to administer oxygen. The ambulance came not long after, they checked him over too, no sign of infection, just weak muscles. I had tried the NIV on Chris while waiting, it helped a bit, but yet again he could only manage 5-10 minutes. 

I rang Angela, his palliative care nurse in morning, what do we do next to help him? She said to give him half a lorazepam when he goes to bed and if he wakes distressed to do the same again, we will monitor this and arrange for GP to come out and assess him too. I also rang the physio about his neck weakness, she suggested tilting back the wheelchair to support his head, we will try that.

This is so scary, the progression seems to have really speeded up. I have asked Chloe to come home for one day next week before she starts her new job and is back at BIMM. She is going to try the train now she has moved, but she has to sort out a Student Railcard first.

I am having to have someone help me to move Chris now am and pm., my son and his wife at night and his brother in the morning. The physio said the hoist will be here on Friday and Angela will chase the caring situation as she said they should have been in touch by now.

There is not much more to be done except keep Chris comfortable. How long does he have? Who knows? Months I hope...I the very least, But I am not liking this at all and I am feeling very helpless and very scared.