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.

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.

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.

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.

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.

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.

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.

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 progress...it is anybody`s guess on that one, nobody knows. He is 57, it has only been 15 months since diagnosis, we didn`t think he would reach this stage so soon, recently the progression has certainly snowballed.

Bloody hell this sucks and as Chris says,` I can`t do bugger all.`

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 pray...at the very least, But I am not liking this at all and I am feeling very helpless and very scared.

No. 228. 'Damn MND.'

My poor boy, the auctioneer was here this afternoon cataloging the machinery for our sale, the sun was shining so Chris wanted to go out and be part of that. He had been gone about an hour and then I spotted him coming up the drive in his wheelchair. He was hunched up and I could see streams of mucous coming from his nose and mouth. I rushed out with a cloth to wipe him and it wouldn't stop coming. Once inside I used the suction pump on him and then did some cough assist to clear everything. Goodness knows where it all came from, maybe the sunshine, breeze and fresh air exacerbated things, I felt so sorry for him, he was really enjoying being out there with his brother. 

Damn MND!!

No. 227.'Every breath...'

'Do you get afraid ?' says I 'Yes' says he.

I have always had to know about things, as a child I loved encyclopaedias, these days I trawl the Internet. Before Chris's diagnosis I knew everything there was to know about MND, I might not have understood it all, but I read it all, from symptoms to prognosis to the tests that are done and what they mean, the different types, you name it, I read it.

I watch Chris and the way he breathes and I get scared. His chest muscles are failing, of that there is no doubt and that scares me the most. We were told and I have read the same online, that NIV does not extend life with severe bulbar symptoms, which Chris has, it just makes life more comfortable and would help him be less sleepy. Try as he might the NIV has not been successful for him, it is not suitable for everyone. He finds it particularly difficult on a warm day to breath indoors, so 30mins pottering around outside in his chair, as long as it isn't too hot, which let's face it is a rare occurrence here these days, helps a bit. I put the fan on him indoors which helps a bit too, but of course that has a cooling effect so I have to wrap him up warm if we use that. He tends to sleep most of the afternoon these days too. 

I have to know what I am dealing with, so I researched respiratory failure with MND. Palliative care relief aside I believe as the muscles get weaker, C02 levels build up and I think over a period of time the person gets sleepier and sleepier and eventually doesn't wake up and peacefully passes away in their sleep. Of course the added complication of a chest infection would exacerbate things even more. I am of course under no illusion that things will be exactly like this, it sounds a gradual if awful process, but time will tell.

So this is what I am watching now, once the person you loves get diagnosed with MND you are watching them die a bit everyday, but it seems all the more real now. I am getting in touch with the people in the know, to know what I should be doing or watching out for. 

Chris is getting so much weaker too, trying to push himself up in his chair just to let me pull his pants down is impossible for him at times and it really hurts his weakened shoulder muscles. This hoist can't come soon enough. 

There are times when I wonder if he will be here for Christmas, let alone next summer for Chloe's graduation, but you can never tell with this disease. 

I don't want to lose him, but watching him suffer like this is unbearable.

I think back to just 18 months ago when he was still able to work on the farm, when he ate three hearty meals a day, when he could get in with the cattle and drive tractors, when he could still walk a long way through muddy fields, in spite of this funny limp he had, when we could get in the car and visit Chloe without too much thought, when we could hug and cuddle and I not literally take his breath away. 

It just isn't fair and it is so bitterly cruel.

We know a cure won't come in time for Chris, but we both pray with all our hearts that there will be one soon so that others will never have to go through this nightmare. 

No. 226. 'Not a bad day.'

We were asked if we wanted to do an awareness stall at our local village church fete. Normally I would do it on my own, but Chris needed to be with me, I wasn't going to leave him home alone and I wasn't sure if he would need to get back home. I asked a lovely lady who I had gotten to know, Christine, she had lost her husband to MND and was on the local branch committee, if she would help me and she agreed.

Christine brought a lot of awareness stuff and I made up a hamper of local produce as a raffle prize. I also made up ten copies of Chloe's single on CD. We went down in the morning to set up, we live right next door to the church so it wasn't far. Chris had a bad mucous/choking attack while we were down there and I could see he was not only distressed, but really embarrassed too as there were others there setting up. We went back home where he settled and he had a little rest while I made Christine and I some lunch. I did a short cough assist session with Chris before we left to go back down, so hopefully he would be OK there.

Thankfully Chris was fine during the afternoon. Mawgan is a lovely village and so many people were pleased to see Chris and came up to him and chatted to him, even though it was hard to understand him and I didn't see any one who looked awkward or embarrassed by that, they were all just lovely. I interpreted for him where needed. Chris still has yet to get fully up to par with any speech software, he has been too tired to practice. 

Christine's daughter came along too for an hour and we amazingly made over £127, including the sale of some MND Christmas cards. We also sold all of Chloe's single for £2 each, so that was worth the effort of making them up. It was lovely to catch up with them both and I was relieved it was worth their while coming along as they don't just live up the road.

Chris wasn't too bad when we got back, I think catching up with people really did him good. He settled down to watching Bonanza when we got home, he will always be a cowboy at heart.

As Tam and Karl are on holiday I asked Jordan and Tracey to come over to help me transfer Chris from his wheelchair to his shower chair. They came over around 9pm, so it was much earlier than we would normally prepare for bed. I guess we will have to get used to that once the carers start coming. I managed to get Chris from the shower chair into bed as he is able, just, to slide across. The bedtime routine takes about an hour by the time we've done the convene routine, set up his feed pump and normal bedtime stuff like washing and teeth brushing, so it wasn't too bad really. We don't usually set his feed pump going till around 11pm to midnight as it runs for 7 hours and we don't want the alarm going off too early in the morning. By the time I had sorted the dogs out and done my own bed time routine and both watched Casualty in bed, well I did, Chris fell alsleep, the timing was about right to set the pump going and to go to sleep.

All in all not a bad day with some money and awareness raised . Got to be glad for that.

No. 225. 'Up then down.'

 One thing I have learnt with this disease is to take nothing for granted. The progression seems to be gaining pace and everyday Chris is getting weaker. This morning he started to get some weakness in his neck. After the ups and giggles of last night, today he has hit rock bottom. He is totally miserable. When I told him he had every right to feel miserable he said he didn't, he always thinks there is someone worse off than him which of course there is, but that is beside the point. Who wouldn't feel miserable in his position. It is hard to get him to talk, but close to tears he said he missed doing things, working, the weaker he gets the less he can do. 

He went out around the yard for a little bit, but soon came back. He is quite breathless and that worries me too. He wanted to sit in his arm chair, but I had to get Karl to help as he was too weak to push himself up out of his wheelchair. I asked the palliative care nurse what would happen if he became too weak to be transferred before carers are sorted and she said he would probably have to go into cottage hospital in Helston. Oh, no, not that, please let him stay the same for a couple more weeks. Tam and Karl are off on holiday for a week on Saturday too, but at least my son and his wife aren't too far away.

I feel so very, very sad for him and it breaks my heart to watch him deteriorate bit by bit like this. If there is a God up there, he must have been having a very bad day when he thrust this awful disease on mankind.

No. 224. 'Another Willy Wonka tale.'

I shall be very careful how I tell this as I have strict instructions from my husband not to embarrass him. For anyone who doesn't know, a convene sheath is a bit like a condom. It attaches to the Willy Wonka the same except it has glue inside, this then attaches to a catheter bag. In order for the glue to set you have to wrap your hands around said Willy Wonka so that your body heat sets the glue. 

Now I have to do this for Chris and this evening while this was going on Chris was giggling trying to tell me something funny, I had a hard job understanding him and I kept trying to guess what he was saying. Instead of either of us getting frustrated in these situations, (excuse the unintended pun) we usually laugh at each other and it becomes kind of like charades, me trying to guess what he is trying to say, Chris trying to give clues, made all the more funny by what I was doing at the time.

You have to see the funny side sometimes.

No. 223 'Total dependence.'

I've mentioned on numerous blogs that it has become increasingly difficult to transfer Chris as he is less and less able to support his weight.

The palliative care nurse came this morning, I had phoned the physio yesterday because they deal with the equipment needs and she came too. The physio wanted to see Chris stand to assess whether he would need a stand aid or a hoist. I think it was quite clear when they both had to support him that a hoist was needed. They could see Chris was pretty weak now in his upper body as well as his legs. 

This in turn prompted the talk of carers. We were told that two carers are needed to use the hoist and although I could help, Angela felt it would be better to have two to start with, twice a day. I know Chris isn't really happy about this, but he knows it is necessary. Angela said she would be fast tracking continuing care, which hopefully means the care will be funded by the NHS, fingers crossed. Chris has also tried to shave himself and brush his teeth since we got back home, but again he reluctantly admitted that he needed help, so I do both for him now. My dear boy is now totally dependent on others for all of his needs, my heart breaks for this once, very hard working man, to have so much stolen from him, it is so cruel and unfair.

We also told her that Chris no longer wanted a trachaestomy in any circumstances, he personally didn't want to be kept alive while his body continued to die. He said he did however wish to be resuscitated as in a heart attack for example. Angela explained the realities of this and that should he survive resuscitation in such circumstances he would be very ill and put into ITU. I understood what she was saying, but I think Chris needed more time to ponder this point. She is going to send out some literature to help explain things. It is hard for anyone to accept these things and to decide what to do about it. It is scary.

We also talked about our trips to Plymouth and the equipment they have loaned Chris, how the cough assist and suction were working well, but still not the NIV.

Ironically he felt pretty good mucous wise yesterday and refused the cough assist, he wanted to try the NIV at bedtime, however the same thing happened and it triggered a choking episode. Today he is paying for not using the cough assisit yesterday as the mucous has built up twice a much and the cough assist session today really took it out of him.

Now he sleeps and I take some time out to rest. In the distance I can hear the cattle calling as we are having our last TB test before the cattle are sold next week. I know all of this has affected Chris too.

What an absolute b*****d this disease is, I hate it soooooooo much!!!!

No. 222. 'Fear.'

MND creates fear. Fear of what the disease will do to a person, to their body, fear for them as it progresses, fear for the person caring for them, will they cope watching someone they love die a slow and cruel death, will they cope with the actual challenges of caring for them as the disease progresses.

Fear for the future when MND finally gets it's way and consumes it 's prey and fear for the loved ones for the rest of their life without them.

Recently all those fears have been building up in me. So many changes are happening externally with the farm and the ending of many eras, our life is not just changing from MND, but from the external consequences of it. Firstly the farm has been a spoiling, enveloping fold in many ways, now it's time to stand alone. 

My fear in this moment is seeing Chris slowly lose the ability to stand by himself. It seems every day he gets a little bit worse. His saving grace is he still has some upper body strength in his shoulders, but his feet, well they just glue themselves to the floor, turning on the spot is becoming impossible for him. I have neither the height nor the strength to physically help him and every time he needs to move from one place to another, there is the fear that either he will be stuck or he will fall. A stand aid is being organised by the physio and that can't come soon enough.

I fear for his breathing, the on going mucous problems are still stopping him using the NIV properly. Hearing him struggle with his breathing is scary, but so far the longest he as managed on NIV is 45 minutes before he starts choking and panicking. He had decided he does not want a tracheostomy, so what is left? The fear I have watching him slowly get weaker in many ways.

Fear of the day when carers will have to come into our home to help us, fear of the inevitability of that. 

The fear I have of being on my own one day, of being without Chris, I can't bare to think of it. He has looked after me well, I shouldn't have too many worries from a practical point of view, but that all means nothing without him. I don't want him to leave me, this wasn't how it was meant to be.

I feel all this fear inside me, a physical being, churning and knotting, growing and multiplying.

MND has to be the most frightening thing in the world ........ever.