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.

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.

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.

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.

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.

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.