Breathe Again

In the days following my birthday, the ITU staff began the process of trialling Marc off the ventilator to see how far he was able to breathe on his own. He was put on to a ‘step down breathing circuit’, using a machine called a Drager, which I came to completely despise. It is a piece of equipment which allows a patient to breathe for themselves while still supporting them to some degree, depending on their condition. Basically, it allows the lungs to attempt to work by themselves again, but still gives the patient some assistance with their breathing. The support given by this machine can be increased or reduced, depending on how well the patient is doing.

Some patients who are on a ventilator for a reasonably short period of time can start to breathe again without the aid of a Drager machine. Marc however, by the time they began to feel he was ready to try breathing by himself, had been on the ventilator for around ten days, and his lungs were clearly not up to much. Initially when the purpose of the Drager machine was explained to me, I felt positive about it, sure that it would have Marc breathing again in no time. As it turned out, it took him almost a month before the breathing tube was completely removed and he was deemed able to breathe with no support whatsoever. This period was a kind of hell for both of us.

Clearly struggling

The theory with the Drager is that a patient is transferred on to it for a period of time each day, and those periods of time are increased as the patient becomes stronger and more able to breathe independently for longer stretches of time. Marc started on the breathing circuit for a two hour period each day, which he seemed to manage quite well. After he had done this for a few days, the staff began to increase the amount of time he spent on the Drager to four hours, or sometimes two separate two hour periods. During visits on these days, Marc’s diary is filled with me commenting on how tired he seemed when I saw him, and how much he was concentrating on his breathing, which he was clearly struggling with.

I think the fact that he started on this process just as he began to wake up and become more conscious was, although necessary, actually quite detrimental for us all mentally. It certainly made Marc far less communicative again. After my excitement over his escapades with the communication board on my birthday, when he had tried so hard to speak to and even joke with us, his energy levels seemed to diminish and he was far less able to ‘talk’ to us. I think, looking back, that all his energy was taken up by his total focus on the breathing. It took so much effort just to get through those few hours on the Drager with less support, that he had no energy left over to spend it pointing at letters on a board.

Difficult to take

This left me bitterly disappointed, after my initial burst of hope on July 5th. I couldn’t believe how much of his strength had to be used up in the simple act of breathing, which the majority of us don’t even think about. I suppose when you consider that all of his internal organs had begun to shut down during his initial trauma, it’s easy to see how his lungs had been weakened along with the rest. At the time though, this was difficult to take, and felt like we had taken one step forward and two steps back.

During this period, every day as I visited him, he seemed more listless and tired. I began to worry that he was becoming depressed, as he seemed to be finding the breathing so difficult. In addition to this, he was still struggling to sleep, which created a sort of vicious cycle he didn’t seem to be able to break. No sleep meant less energy for the Drager machine, so he wasn’t able to increase the amount of time he spent on it, and this worried him, so he was less likely to sleep. Every day the staff would attempt to get him to manage longer, to no avail. But we were all very aware that until he could breathe for himself, there was no chance of him leaving ITU. And that meant no chance of him seeing the children. I cannot stress enough how learning to breathe seemed like a completely insurmountable challenge for Marc for such a long time.

The role of the physio

Physiotherapists had begun to visit Marc, although to begin with I didn’t really understand why. I have two friends who are physios, and for years when we spoke about their jobs they referred to working with ‘respiratory’ patients. I could never understand how a physio, who I associated with rehabilitating limbs which had been broken, back injuries or working with patients who were learning to walk again, could support patients with their breathing. They had tried to explain it to me several times, but I don’t think I ever fully understood.

Until Marc needed them. The physiotherapist’s first job was to visit Marc daily and help to clear his chest of all the secretions the body usually takes care of all by itself. At this point Marc’s lungs weren’t strong enough to do this. Then the physiotherapists began to come and ‘work’ his lungs for him, attempting to support him through his periods of time on the Drager machine using a variety of machines and techniques to encourage Marc’s breathing, as well as giving him constant encouragement and advice. The physios were to become key members of the team supporting Marc, and we knew them extremely well by the time he left the hospital.

The tracheostomy

As the doctors realised that Marc was not going to find breathing again very easy, they took further action. On 8th July, one of the doctors spoke to me (in the relatives room I had come to know so well) about Marc having a tracheostomy. This meant taking the large ventilation tube out of Marc’s mouth and replacing it with a smaller tube in his throat. The procedure was a small one, and the doctors would have to sedate him again while it was done, but this would only be for half an hour or so, and he would be much more comfortable after this, although he still would not be able to speak to us.

My first reaction, having almost lost him several times already, was that I didn’t want him to be sedated again. In truth I was a little frightened every time he was unconscious, even though I knew that the doctors were sedating him purposefully, that he would never be conscious again. But Marc’s mouth by this point looked incredibly painful after a fortnight of the huge, invasive tube. He had tender-looking sores around his mouth which the doctor said would be able to heal once he had the trache fitted, and he would be so much more able to move without the massive tube attached to his face. His facial expressions would become clearer, he would be far more comfortable, it would be far easier for him to participate in the physio exercises and the trache tube would work just as well in terms of allowing him to learn to breathe again.

Less invasive

I consented to the operation and spent an anxious hour sitting in the dreaded waiting room while the doctor did the procedure. Thankfully it went as planned, and the doctor came to tell me that Marc was fine, just still sleeping. When I was allowed to return to him he was still out cold, but he did look much better. His face was no longer obscured by the enormous mouthpiece and tube, and the one protruding from his throat was much smaller and seemed less invasive. In a similar way to the removal of the dialysis machine and Bair Hugger blanket, which had made me feel much closer to him, the removal of the tube made him look more like ‘my Marc’.

We still had a long road ahead of us in terms of him breathing independently again, but at least he looked more comfortable now. And, for the first time, I could actually get near enough to his face to be able to kiss him. This made me feel like, little by little, he was coming back to me.

Recovery

I feel like I have spent a lot of time recently describing my concerns about the other things which were going on in my life, outside of Marc’s recovery. But while all these things were going on in the background, Marc’s condition had (almost) stabilised; there was no longer a constantly present, terrifying, could-die-any-moment feeling, and Marc had begun the extremely long and challenging road to recovery. His diary chronicles his progress in brief, but does not go even part of the way towards describing the millions of steps Marc had to go through to begin the process of getting ‘back to normal’.

He was left, after the initial extremely traumatic week in hospital, coming out of a medically induced coma slowly and coming to terms with what had happened. I have to remind myself that I had been present throughout the entire process, while Marc had been out for the count for the majority of it. He tells me now that he remembers parts of the initial illness, the weekend at home, being admitted to hospital, but after that his memories are extremely hazy or non-existent. I cannot imagine what it was like for him to begin to come round, as one would from a general anaesthetic, wondering where he was and what on earth had happened to him.

Something like normal

He was pretty much immobile: the induced coma had saved his life, but also ensured that he lay still, using few of the muscles in his body, for over two weeks. Apparently the body’s muscles begin to waste away after only a forty eight hour period in bed. So two weeks of severe illness and two major operations had taken their toll: Marc’s body was weak and capable of almost nothing. While the correct antibiotics had rid him of the Group A Streptococcus, it wasn’t as simple as that. He had a machine breathing for him, was requiring additional minerals, bloods and lots of painkillers at different times just to restore his body’s levels to something like normal. He was having daily bloods and swabs taken to check his condition wasn’t worsening at all.

Over the early days of July, his condition did alter for the worse several times. His diary records the nurses and doctors trialling him off dialysis several times until he was strong enough to manage without it, and increases of the drugs he was being given for his blood pressure and elevated heart rate were given several times before being decreased more permanently. His painkillers were increased as he became more conscious and the staff realised he was in more pain than they had first assumed.

In addition to this, his temperature was up and down constantly, and the amount of food he could tolerate through the tube to his stomach varied daily: sometimes it stopped absorbing the food altogether for periods of time. All the time, a constant stream of consultants, doctors, nurses, sisters, physiotherapists, microbiologists, nutritionists and tissue viability experts were in and out to examine and further advise on treatments for his condition. It was a massive balancing act.

A growing realisation

As Marc became more conscious, we tried to explain his situation to him. I had been warned by the nursing staff that often when a patient with a ventilator comes round from their coma, they fight against the tube in their mouth. The ventilation equipment is huge, involving a mouthpiece which fits in between the lips and a fairly hefty tube which travels down the airway and into the lungs. All of this is attached to a machine at the side of the bed which makes a constant sort of ‘whooshing’ noise and beeps regularly. When Marc awoke, he didn’t fight against the tube; in fact there are very few episodes where Marc was noted to have any kind of violent or noticeably negative reaction to what was happening to him.

I took the lack of struggle as a good sign. Surely this only meant that he was understanding what we were telling him about the illness and understood what the tube was, and that it was necessary. It was only much later that I considered it could be a negative thing that he didn’t fight it: it was almost as if he didn’t have enough fight left in him to try and reject the tube and attempt to breathe for himself. There are examples of patients who have not been in comas for a very lengthy period of time coming round and having the ventilation tube removed very rapidly, finding themselves breathing normally again within a matter of hours.

Not Marc. Learning to breathe independently again was to be one of his biggest challenges. But more on that later.

Conflicting emotions

Once the momentous occasion of my birthday was passed and he had shown himself capable of taking in information and understanding it, we took to telling him a little more information each day. At first, just that he was in hospital, that he was safe, but that he had been very ill and was recovering. We repeated the same information over and over, feeling unsure about how much of what we said was being understood or taken in properly, to make sure that Marc did understand and was digesting the information we were trying to get across to him.

I personally felt that he would need repetition and reassurance, the things I imagined I would want for myself, were I in his situation. He didn’t begin to respond to us regularly for a long time, so I was never completely sure that he took in what I was telling him, or how he felt about it. I wanted to make sure that he wasn’t frightened when I left him at the end of a visit, and couldn’t be sure how much time the night staff had to speak to him, or even if they would speak to him, perhaps leaving him alone to sleep. I couldn’t imagine a worse nightmare that waking up with a head full of fears and questions and no way of asking anyone for reassurance. Of being left alone in an alien world of blue and white, surrounded by strangers and feeling completely abandoned by all of the people who loved him.

When I left him after evening visiting, it was with a mixture of fear, sadness and relief. And guilt. Relief that I could leave the hospital, a place I knew was utterly necessary, but had grown to dread entering. Guilt at feeling relieved, and also guilt that Marc wasn’t able to leave with me. Fear that he might not still be alive when I returned the next day. Sadness that he had to spend yet another night by himself in ITU. As he communicated with us more (not verbally, but I would ask him questions and he began responding to them with nods and so on, letting me know if I was right or not about how he was feeling and what he was thinking) my understanding of the time he spent in ITU outside of visiting hours grew.

Sleepless nights

I became aware that he couldn’t sleep at night, with all the noisy machines, the ever-present-if-slightly-dimmed lights, the nurses bustling about quietly, plus all the questions he had about his condition which we hadn’t managed to answer for him yet. This made me feel even worse, and I remember quizzing the nurses each day about how he had slept and what the doctors were doing to make sure he could get a better night’s sleep the following night. He was given lots of different sleeping drugs throughout his time in ITU, but claimed that none of them really helped him. This worried me: in my mind, like sufficient nutrients, sleep was a vital part of Marc’s recovery, and if he couldn’t sleep, how could he begin to heal?

He began to be awake during my visits, but could barely lift a hand or arm, never mind his head or body. It required three nurses to ‘roll’ him every few hours, to prevent him getting bedsores. His bed was a special one which moved automatically every few hours (adding another noise to the cacophony of sounds in ITU) making sure that he was never settled in a single position for too long. His legs were supported on air-filled tubes a little like bubble wrap to prevent them from getting sores, which would run the risk of becoming infected and further complicate his condition.

Able to reach him

As he came off the dialysis machine, the nurses removed the Bair Hugger blanket from his body and I felt more able to reach him. This was probably when I became more aware of the state his feet were in. The staff did an extremely good job of not frightening us about them. It took me a long time after Marc left hospital for me to realise how close he came to having them completely amputated. At the time I only remember being shown them once or twice, and aside from acknowledging that they looked an odd black colour, I didn’t really think about it too much.

I’m not sure my brain could cope with it. I think I was so worried about other things that my mind reached a kind of impasse where it said ‘No more!’ and refused to take in any additional information about other issues linked to Marc’s illness which I considered to be ‘non critical’. It was only later that his feet became my major concern, when he was through the worst and his survival was no longer my main focus.

So he lay there. Unable to do anything for himself, even move or breathe. Beginning to comprehend some of what had happened to him. Frustrated that he could do little to improve his own condition, at least for the moment. And, at some point, his long, arduous journey towards recovery began.

A Marathon Challenge

Fitness and weight have played an important role throughout Marc’s period of illness. Before he became ill, he was 42 and had begun training for a half marathon, probably a nod to the ‘mid-life crisis’ turning 40 can bring on. He had felt the need, upon reaching that momentous age, to get fitter and set himself a new and challenging goal. The English Half Marathon was set to take place in Warrington in September 2014, and Marc had signed up to run it, along with a couple of friends, the previous November. He had spent much of the darkest months of winter 2013-14 training in the evenings, and by spring he was running distances of up to 7 or 8 miles. He was, justifiably, proud of himself and well on track to achieve the 13 mile distance he planned to run in the autumn.

When he ended up in hospital, several of the doctors commented on how much of his survival was down to his fitness levels. That someone with the same illness but a higher resting heart rate and carrying more weight would not have stood the same chance, and might not have pulled through as Marc had. It certainly made me think about my own health. Could I honestly say that I was that fit? That, should I contract a sudden and mysterious illness, my body was strong and healthy enough to fight it off?

Difficult to look at

When he entered hospital on 23rd June 2014, Marc weighed around 80 kilograms, or 12 stone 8 pounds. This is not a huge weight anyway, for a man who is 1.9 metres tall, or 6 foot 2. During his hospital stay, losing muscle mass by the day and being fed for the most part by tube up his nose, he lost around 19 kilos, or 3 stone. When he left hospital (and believe me I do not say this lightly), he looked like someone who had come out of a concentration camp: his ribs sticking painfully out from his chest, his skin hanging off him in folds, his arms frail and weak. My first thought when he came home and I saw him without all the bedsheets and covers which had masked his condition for three long months in hospital, was that he had become an old man, wizened and skinny. In truth I found it difficult to look at him without clothing, feeling close to tears whenever I did.

Eating was a major problem from the moment he entered hospital. Fed nasally to begin with, his traumatised stomach eventually began to digest the liquid food being dripped into it, and the nurses taking care of him remarked to me that, slowly, he was becoming more able to tolerate it. Each day they painstakingly recorded the amount which was being absorbed by his gut: tiny, tiny amounts to begin with, and increased the amount of feed being administered accordingly. Several times an optimistic nurse upped the amount too high too quickly, and it had to be reduced again in order to allow his stomach to begin coping again, with only the very smallest increases possible to begin with.

Slow progress

If I have learned anything from Marc’s illness, it is that recovering from a major trauma or illness takes time. So much time. I didn’t expect that it would happen overnight, but I massively underestimated how long it would take every part of his body to return to something like normal. Everything his body had to do in the recovery process happened slowly, and if we tried to rush or fast forward things, we often found ourselves being set back further than we had been in the beginning. His digestive system was one of the things which took the longest to settle down. Even now he has a far smaller appetite than he ever had in the old days, pre-illness. Eating out can be a challenge, as he can’t manage massive meals any more: starters and puddings are a thing of the past: he rarely has anything other than a main meal these days, which he often does not finish.

But his weight loss was such a major issue, to me at least, that once he was home from hospital I tried to force-feed or persuade him to eat every sort of fatty food available. We saw dieticians, who had little advice other than to load his food with cream, full-fat milk, sugar, and take dietary supplements. Most of these only made him sick, or reminded him of the unpleasant time he had spent in hospital, bringing back very negative memories of throwing up every time he had one.

Devastation

It sounds ridiculous, but I spent a good few months being completely paranoid that Marc would die of starvation, or have to receive food through a tube for the rest of his life, he was sick so often. I would watch him eat a meal and then sit, observing him carefully, quizzing him about how his stomach was coping with the food he had just consumed, and then feel a fresh devastation come over me when he headed to the bathroom and I knew he would not keep the food in his stomach.

I despaired of him ever managing to eat a normal meal, of his stomach and bowel functioning correctly enough that he could consume food and keep it in his system long enough to absorb the nutrients and begin to put on weight. Looking back, it was ridiculous. I was so desperate for him to return to normal, and eating is such a necessity for life, that I probably pressured him into consuming more food than he was able, thus making his stomach more likely to reject its contents and continuing the vicious cycle which I had set in motion.

Desperate to return to normal

It didn’t do our mental health or relationship any good either, as he regularly tried to eat more than he could manage, probably partly to please me, and I sometimes even felt angry with him for not managing to keep the food down, even while I was perfectly well aware that it was not his own fault and that he wanted to put the weight back on and return to normal just as much as me.

And none of the medical staff we saw seemed to have an answer. There is plenty of advice out there on how to lose weight, but very little about how to successfully put it on. Any advice there is focuses on eating larger portions and adding more fat and protein to your diet, which was no good to Marc, as the volume of food he could tolerate was so small, and adding to it only exacerbated the issue.

In the end, I have come to realise, the solution was time. Eating small amounts fairly often; adjusting to how much his stomach could manage and not exceeding that amount; gradually increasing the volume of food he ate in infinitesimally small amounts; trying to make sure that what he did eat was high in fat and protein content: these were the ways he managed to increase his food intake and therefore his weight.  It as definitely goodbye to salad and vegetables for the time being!

Clearing my head

Meanwhile, I was losing weight through worry. I somehow believed that weight loss through stress was almost a fallacy, that it wouldn’t happen to me. I was so wrong. I took up running, a sport I used to despise, and found that it did wonders for my mental health. I didn’t run far, and I will never run competitively, but just escaping for twenty minutes allowed me to clear my head and destress a little. I found that once I got going (I’m not very fast but can do distances without stopping at a fair pace) and was out of breath and tired, all I could concentrate on was running and breathing, which was fantastic. I also found that thinking things through outdoors, without anyone else to worry about, was really freeing.

Between the running, which was very good for me, and eating less than perhaps I should have done, I began to lose weight. I didn’t notice at first, and I certainly never got to a worryingly low weight, but I definitely began to notice a difference when I went back to work in the September and my suit trousers almost fell down! Weirdly, it was nice to lose a little weight (I had probably been a little heavier than I should have been) and I certainly got a lot of compliments.

Immensely grateful

But at least one person pointed out to me that my weight loss was not really a good thing, as it meant that I wasn’t eating well. I am certainly immensely grateful that Marc’s situation began to improve when it did, because a prolonged period of time grabbing snacks and half-eaten meals, unfinished because of time pressures or because I was too worried to eat any more, would possibly have left me at a weight which was dangerous.

As for Marc, he came out of hospital on Thursday September 18th 2014. The English Half Marathon took place around Warrington on the following Sunday, and he was immensely proud that one of his very first outings after coming home, in a wheelchair and still extremely weak, was to cheer on the friends who he should have been running with. He had, in effect, run his own ‘marathon’ and to be out of hospital, back at home with his family after his long and arduous struggle to recover, was a major triumph in itself.

Happy Birthday!

I recently celebrated my fortieth birthday, and with it came the celebration of two years since Marc’s illness. It put me in mind of the length of time we were told Marc would take to recover, back when it first started to look like he was going to survive. Healing from the kind of trauma his body had experienced was going to take a long time. I remember speaking to one of the sisters, and I must have been being overly optimistic about getting Marc ‘back to normal’, because she gently informed me that recovery of the sort that Marc was going to have to experience was not going to be fast. She suggested a figure of two years, and I remember thinking two things: one, how ridiculous – it won’t take that long, and two, it’s my fortieth birthday in two years, if that’s how long it will take for Marc to recover, we’re going to have one hell of a party!

And party we did. But a post about my fortieth party can wait for another time. For now, I want to go back to my thirty eighth birthday. It was on a Saturday, just over two weeks after Marc had gone into hospital. The day following my grandma’s funeral, which I had been unable to attend. I didn’t feel much like partying then, I can tell you. I almost wanted to forget it was happening, and get on with visiting as normal. But, in the nicest possible way, my family wouldn’t let me. After the children’s usual Saturday morning clubs, Mum and Dad drove myself and the children to Pizza Hut where we met my sister and my nephews for lunch.

Nicer than it should have been

It was actually nicer than it should have been. The kids, even my two, who understood more about their dad being in hospital than their cousins, acted as kids do normally, they played up, were excited about the prospect of pizza, of spending time with their cousins, of going to the park afterwards. The adults, although weighed down by the severity of what was happening to Marc, made an effort to  have fun for the kids’ sake, and all in all it was a nice lunch. The plan for later was for one grandparent (I don’t remember which) to take the children home to play, or to the park, while the other came with me to the hospital for visiting.

I had received some presents from Mum and Dad, from Janet and the boys, and even from the children (although it certainly wasn’t Marc who bought them, it must have been my mum). I can’t tell you what I got from anyone, I was so distracted. I think there were some sweets involved, and probably a book or two. I’ve no idea, really. The best gift was to come when I got to the hospital.

A marked improvement

After a fortnight of drifting in and out of the medically induced coma, when we arrived at the hospital that day, Marc seemed far more ‘with it’. By this I mean that he was propped up a little higher, his eyes were fully open and alert, and he was able to move his hands and arms a little, although it took a lot of effort. Linda and Matt were at the hospital too, and both remarked on the improvement in Marc as they wished me a happy birthday. I can’t remember which nurse was on duty that day, but I seem to remember there being more than two people around the bed at one point at least, so maybe the nurse was a more lenient one than usual, or perhaps we took advantage because of the special occasion. Even the staff were thrilled that Marc seemed so much better that day.

I told Marc that it was my birthday, knowing that he would have no idea what day it was. He couldn’t speak to wish me a happy birthday of course, but I wanted him to know. Because he was far more alert than he had previously been, the nurse suggested we try something new with him. She brought a kind of laminated booklet over to the bed, ringbound, with a number of different sections all containing images and letters. I think they are called communication boards, and they are extremely useful devices for people who have no speech.

Beginning to communicate

With little difficulty, we managed to instruct Marc that if he was able to point at the different pictures or letters, he would be able to communicate simple messages to us. This was very exciting for me, knowing I might soon have more of an idea how he was feeling, but even more crucial for the nurses, who would be able to clarify things with him and check whether he understood what was going on, or whether he was in any pain. There were all sorts of different images: ones which allowed patients to explain their needs, that they were hungry, thirsty, hot or cold; different parts of the body which might require attention; instructions like ‘fix my pillow’ and ‘turn the lights off’. It seemed a revelation to me that such things existed, and I was heartened at how much of a difference it might make to Marc’s situation.

There was also an alphabet, upon which patients could spell out words to get across less obvious, more complex statements. Once Marc grasped the purpose of this, he tried immediately to form a sentence for me to understand. I can’t tell you how frustrating it was (for myself and for him) waiting for him to spell out the words. Each one took an age, his hands were weak and shaky, it was not always clear which letter he was pointing to, and we had to keep track of each letter in a sequence to work out the word he was trying to spell. What I found even more frustrating was his insistence on spelling out an entire sentence. A single word would have been enough for me to understand his first communication, which was:

W-H-E-R-E  I-S  M-Y  R-I-N-G

I almost burst into tears on the spot. What would you imagine the first communication of an incredibly sick man who wakes up in an unknown hospital bed to be? Where am I? What’s wrong with me? How are the children? But he wanted to know where his wedding ring was.

The same old Marc

But the time it took to get that message across was interminable. He could easily have spelled out the word ‘R-I-N-G’ and I would have understood. But no. He insisted on doing everything in full, proper sentences. Since his illness, I have had people enquire whether Marc’s brain was affected by his condition, whether or not he was still fully functional mentally after what he had gone through.Thankfully, his brain was never affected, and aside from him suffering from some understandable periods of anxiety and depression, which were temporary, mentally he is very much the same Marc. I suppose this spelling out of whole sentences was a good sign, that he was able to communicate properly, clearly, but at the time I was ready to scream.

After I reassured him that I had his ring safely at home, I went on to tell him where we had been for lunch. His second sentence?

I-  W-A-N-T  P-I-Z-Z-A  T-O-O

That had us all laughing. The thought that he could contemplate eating pizza when he was barely tolerating being fed liquid through a tube was pretty funny. It was also quite sad really, as there was no way he would be able to eat pizza for a long time after this point, but the fact was that he had made a joke (he wasn’t being serious, he knew he couldn’t eat pizza) and suddenly, for a tiny moment, there was a flash of the old Marc. I don’t think I’ve made it clear up until this point, but Marc is a very funny man. Usually, he makes me laugh daily, and I had at that point been without that laughter for over a fortnight. As I chuckled, I realised how much I had missed him, and felt like this small amount of communication, this little joke, was his birthday present to me. And it was the best one I’d had all day – perhaps the best one I’ll ever have.

An amazing day

I have to say that it didn’t last. I thought that after having this amazing day, where he had managed to communicate so much to us, things would start to move on a consistently upwards trajectory, but that was not the case. After spelling out the two initial sentences, I was keen for him to tell me more about what he was thinking, and I asked him numerous questions, but they had completely taken it out of him and he couldn’t manage any more. He fell asleep soon afterwards, and was actually far less communicative in the days following my birthday. It certainly took him a long while before he tried the communication board again.

But it had been enough. Enough of a present to lift my spirits, to give me hope that there was a future, that he could recover, that he would be able to make me laugh again. And that’s what I hung on to in the difficult days that followed.

The Right Decision

Aside from worries about Marc’s health, how the children were coping, and how we might cope financially if Marc were ill long term, two weeks into Marc’s hospital stay, my grandma’s funeral took place. If it had been vital for Mum and Dad to take time away to organise it, it was obviously even more important for them to attend it, so on Friday 4th July, they planned to drive over to York to attend it with my sister and the rest of the family.

In the days running up to the 4th, I agonised over what to do. I wanted to be there at the funeral. I wanted to say goodbye to my Dad’s mum, a woman I admired immensely. To pay my respects to the Canadian woman who had left her country of birth during the Second World War to travel to India to be a missionary, met my grandad and married him within the year so that she could legitimately come home to Britain with him at the end of the war. The woman who had baked Anzac cookies for us every time we visited. Who had looked after us in her home for a solid week during our childhood while Mum and Dad moved house, and built snowmen in the garden after a particularly heavy winter storm. My last grandparent.

Lovely memories

We had never lived very close to any of my grandparents. This meant we didn’t have the kind of relationship with them that many children have with their parents’ parents, but we saw them fairly regularly and they spoilt us, as grandparents do, whenever we saw them. My grandmother had been suffering from dementia, and for the past few months had not really known anyone when they visited her, but I have so many lovely memories of the kind, loving woman she was.

One of my fondest last memories of her was taking the children to visit when they were born. When she held Daniel for the first time as a baby she lit up, seeming more animated than she had done for a long while, and it made me so happy that she had got to meet her first great grandchild and been able to hold him in her arms. When Amy was born she was weaker, and couldn’t quite manage to hold her securely enough without support, but the experience of meeting a new baby still seemed to make her very happy.

I wanted very much to attend her funeral and say my goodbyes.

More responsive

On the other hand, Marc needed me. If the funeral had been local it would have been entirely possible to attend it and get back to visit Marc without any issue. But the journey to York is between two and three hours long depending on traffic, which can be horrendous. I couldn’t attend the funeral and guarantee I would be back to visit Marc. In the early days of his illness I really felt like he couldn’t be left for an entire day without seeing me, especially as he was becoming more responsive to us by the day. The doctors continued  to reduce the amount of sedatives he was on in order to let him come out of the coma slowly and see how he coped. I wanted to be there for him in case he came round and was disorientated or frightened.

I spoke to a lot of people about this. Dad reassured me that it was my decision, whatever I decided was ok by him. If I didn’t come, everyone would completely understand, under the circumstances. I knew that the previous week, when they had gone to make the arrangements for the funeral with the minister, they had spoken to him about Marc’s situation.  Following this discussion, the people of my grandma’s church prayed for Marc at their service the following Sunday, which was extremely touching and made me feel like we weren’t alone. Even while mourning the loss of one of their own parishioners, the people of my grandma’s church were reaching out to support strangers, connected to them only by a distant familial bond.

Selfless

I know it meant a lot to my dad too. I can’t imagine how torn he felt during those few days, seeing his daughter going through such trauma yet at the same time grieving for his own parent. I wanted very much to be there at the funeral to support him, the way he had supported me, but as is typical of him, he was incredibly selfless and insisted that I make whatever decision was best for myself and Marc. It was his mum’s funeral, so in this instance it was his opinion I cared the most about. The only other person I really wanted to ask was Marc, and he wasn’t up for comprehending such things at that point. I also didn’t want to worry him, knowing he would feel he should encourage me to attend the funeral, despite wanting me to stay with him.

I spoke to Linda, my mum, my sister, my friend Clare, all the time hoping still for some kind of miracle leap forward in Marc’s recovery which would allow me to attend the funeral guilt-free, knowing that Marc was ‘on the mend’ and could cope without me. Everyone was lovely, and said that it was up to me, they would support me whatever I did. I suppose in a way I just wanted someone to tell me what to do. I was sick of making decisions and feeling alone in them, so used to discussing everything with a husband who was, for now, out of reach.

My decision

By the Wednesday it was clear that no miracle was coming. Marc was still incredibly sick, and on such high levels of support that his survival was still by no means guaranteed. I knew that I would never forgive myself if I found myself miles away in York and received a phone call telling me Marc had taken a turn for the worse and I couldn’t get there in time. So I decided. I would stay in Warrington with Marc.

But even with the decision made, I felt incredibly guilty and sad.

I sat on the Wednesday evening and wrote a letter. A speech, I suppose, that my Dad promised he would read aloud at the funeral. How he managed it I will never know, but he did. The speech tried to explain why I wasn’t present at the funeral, the reason for my absence and the sentiments I would have expressed in person, had I been at the funeral. It took me a little while trying to find the right words, but in the end I was happy with what I had written. I will never know what the response to my words was, but I suspect it greatly added to the tears shed on that day.

The one person who mattered

I said how much I loved my grandma. How sorry I was that I couldn’t be there to say my goodbyes, to pay my respects. To support my dad, and the entire family, on what must be one of the most difficult days for anyone. I explained why I couldn’t be there, and stated the most obvious fact about my grandma: that I think, if we had been able to ask her, she would have told me to stay at home with my husband. Because although I loved my grandmother, there was nothing more I could do for her now. Because Marc was still alive, with a chance of survival, and he needed me. Because she was the kind of woman who would have completely understood. And as I wrote the speech I realised that, when asking all of the people around me, I hadn’t considered the opinion of the one person who mattered. And I don’t think she would have minded at all.

When I visited Marc on the day of the funeral, I talked to him about my grandma, Helen, sharing my memories of the woman I remembered her to be, and the woman I knew stories about from way before my birth. Exciting, romantic stories of her courage and bravery, of her coming to a strange new country to be with the man she loved, and forging a marriage which had spanned almost 50 years. Of bringing up four children, one of whom was my dad, a man I have the utmost respect and admiration for. I’m not sure if Marc listened or could remember any of what I said, but I tried in my own way to remember my grandma in the way I would have done had I been sitting in the church with the rest of the family.

I knew that I had made the right decision. That she would’ve approved of it. I hope she would have been proud of me, of the way I coped during a time of great stress and difficulty. Of the decisions I made and the way I tried to keep everything going. Perhaps she might have felt that I was a part of her and had in me some of the wonderful qualities that were an integral part of her character.

I truly hope so.