The BiPap Harmony II

We were back at the Royal Brompton Hospital today and have returned complete with a brand new BiPap machine - a non invasive ventilator. It's very compact and will take up hardly any space. We were expertly instructed in its use. Roch had a practice. It's not as noisy as I thought it would be. He doesn't need it yet but it's important that we are both completely au fait with the way it works and how to put the mask on and take it off etc. He thinks the mask makes him look ridiculous but as he hasn't even seen himself wearing it, he is not the best person to judge this. I am here to tell you that he doesn't look at all ridiculous. He did look vulnerable and a little bit scared.

So how does it help? It comes with a simple explanation:

The ventilator is a simple device that acts like a pair of bellows to help support your breathing. You will wear a mask over your nose, or nose and mouth. The ventilator delivers gentle pressure through the mask which helps your lungs to expand. When you use the ventilator, it helps to keep the oxygen levels in your blood at the right level, and helps to get rid of the waste gas (Carbon Dioxide) which you breathe out. This should help you to get a better night's sleep and feel more refreshed on waking in the morning.

We wish it wasn't necessary, but as it is or will become necessary, I do see it as a positive thing, because it will help Roch to feel better and to enjoy life for longer. Its use at night can ensure a brighter, more comfortable day for him. But it feels like a foretaste of the shadowlands to come.

After our session with Adam, the extremely professional, kind and pleasant young man who talked us through its use, we had another chat with Professor Polkey. You remember I mentioned him on the blog before, in pretty glowing terms? He didn't fail us today. Roch is very preoccupied with the issue of how the end will come - or as Professor Polkey neatly put it -"How you will expire". (I don't think anyone has actually mentioned the word 'death' yet). He knew exactly what was on Roch's mind and understood his anxieties. He approaches the issues with great clarity and in a very down to earth way. His very expertise is reassuring in itself. Roch is still adamant that he does not wish for invasive ventilation - given the choice, and if he is not carried off by a chest infection (it happens this way), he would prefer one day, if on 24 hour non invasive ventilation, to have the mask removed and just pass away. According to the Professor, this does not happen too often. But it does happen. It's not illegal, because the patient is simply refusing medical treatment, which is their right and the medical people are very thorough in making sure that this is really what the patient wants and it's not just, as he put it, that the patient has woken up after a particularly bad night, feeling pretty depressed. Almost in anticipation of Roch's next question, he explained that the Consultant (in this case, we're hoping Professor Polkey) will then manage the patient's end of life with pretty powerul drugs, to ease their passing, minimising any distress (Roch is fearful of suffocation).

As before, Professor Polkey is keen to answer any questions, from either of us, but as usual I find I am quite passive at these meetings. It is a subject which I find just too overwhelming. I thanked him, nodded, said I thought he'd been very clear.

When we got home, we were both exhausted and we slept for a few hours. Roch is still resting. I am typing this in the garden, and as I type, I am watching some tiny birds (I think they are coal tits), darting through the branches of our birch tree, boldly zooming in to our new bird feeder (purchased in the New Forest, a few weeks ago) with graceful precision. I would guess that they are watchful for Oscar the Cat (the bird feeder is just out of his reach, of course) who, if they only knew it, is currently fast asleep on 'his' chair in my room upstairs and quite oblivious.

Life goes on. By the way, Professor Polkey did not tell us to 'stay positive'. Thank you sir. I'm finding it a little difficult this evening, I have to say.

'Let's stay positive'

Lots of people give you advice when you're an MND wife and it's very well meant. There's one particular phrase that comes up a lot, and it's beginning to jar. Consultants use it constantly.




Let's stay positive (or 'Advice to the MND Wife')

Best foot forward,
stiff upper lip,
let's be positive,
musn't give up.
Don't let the side down,
be of good cheer,
each day is precious,
remember that, dear.
Live in the present,
forget about the past.
Don't worry for the future,
it may not come to pass.
Is he still working?
Can he still drive?
Oh dear so sorry.
Still, let's stay positive.
Don't speak of sad things,
don't talk to me of loss,
just smile and say,
'We're doing fine.'
No matter what the cost.
Then I can go upon my way,
and leave your life behind,
and thank my lucky, lucky stars
it's not got me, or mine.

DM

It's good to talk

On Sunday 18th September, we went along to the local MND branch meeting. We always feel a reluctance before setting off, we'd always prefer to be going somewhere else! But afterwards, we're glad we made the effort. This time, before the meeting, Roch had invited another 'MND' couple to our house beforehand. We are further along the road than they. Now they are at the stage where they need to plan changes to their home and they were interested to see the job Chris and Tony had done for us. I think they were impressed. As you know, it was a fantastic job and it's all working beautifully.
The two men living with MND sat in the garden with espressos, the two MND wives sat in the kitchen drinking tea. It was good to talk, good to share experiences. We women wondered what they were talking about, what they were finding to laugh about together.
She and I talked about how, although the disease presents differently for every single sufferer, most people experience similar problems at some point in its inexorable course. There should be an answer to the practical problems, we agreed. A central point to go to for tips on how to get round these difficulties. The occupational therapists and District Nurses are usually the people to call on. In our case, the invaluable Donna, our Hospice Nurse, has been wonderful. The MND Association website and literature provide lots of answers.
But afterwards, I took time to reflect and it's all very well, but there will come a point when there will be no answers, when there will be no device or tool to assist. Then it will be down to us as carers - and our helpers too of course, to carry out the task ourselves. Then we will just have to 'accept the things we cannot change' and get on with it. It's not giving up, it's knowing when we have to accept the inevitable.

We talked about how careful we are about offering help. They have a rule about this. She doesn't offer to help unless he asks for assistance. We kind of had that rule, but ironically, that morning brought an incident which has made us revisit the rule. Roch was in the kitchen when I heard something drop to the floor - it sounded like something light, something small. I stopped myself from running in to help. He didn't call me. Instead, he stooped to pick it up himself - and fell over. That's what has to be factored in - will they be sensible about asking for help? He didn't hurt himself - it was a slow descent. It was a few minutes before Tom and I managed to help him up again.

We're learning all the time and no matter how many people have been in the same position before, there's only so much you can learn from their experiences. Still, it was good to talk and I hope we helped each other.

Catch up

I had a meeting with my boss the other day. It was my first 'One to One' since starting in my new role. Before we discussed work as such, she asked me how the work/home balance was going and how I felt it was all working out. She asked me how Roch was. I mentioned that he had had problems driving that morning, but had just about managed. His left arm, so feeble. I told her that I had been finding it quite difficult to get the balance right but that the flexible hours helped immensely, given the recent lessening in strength in Roch's upper arms. It means he needs help with so much more. I think it was a successful meeting - we went on to talk about work and set objectives for the next five months. I felt good about the meeting as it drew to a close and as I left her office, she remarked on how 'chirpy' I was. I've been thinking about that. I suppose I was chirpy. I wonder if she felt that it was odd to be chirpy when your husband is living with mnd, when he is probably losing the ability to drive, struggling to lift the fork to his mouth, contemplating his final resting place. Is it freakish of me? Is this normal behaviour? I don't go round with a long face all the time. I mentioned this to my counsellor and I felt reassured by her response. I am a chirpy person - that's who I am and it's good that I can still feel that way, still be myself. It doesn't mean I'm not facing the truth about the situation and it doesn't mean I'm not sad about it.

He's very tired at the moment and has to rest a lot. We think it might be the lithium dosage which has been increased to three tablets a day. We think, we don't know. Something, (perhaps the lithium) is also affecting his digestion and this is something which has a real impact on his confidence in terms of going out. Perhaps it will settle down but it's another factor to be taken into account when planning any outing.

We're still waiting for the Council to post their notice about our 'disabled' parking space in front of the house. The notice (inviting objections - like a planning notice) stays up for three weeks before they even think about actually painting the lines. So we're still at least three weeks away. I'm hoping people won't park in the space then. It's a struggle for him now to walk even the length of two or three houses away all the way to our front door.

The nice Medequip men came and measured the bed. They are making bespoke raisers and fixing the bed to the floor to make it easier for him to get in and out and to stand up from a sitting position. Speaking of which, the leather easy chair will soon be extant from his point of view. Enter the 'riser' chair - that will be the next step.

Ambushed again

We didn't have a great weekend last week. We were on edge with each other. We talked about it a bit the other day and agreed that we really had to acknowledge how shaken we were on Saturday by his inability to drive. He couldn't lift his left arm. He has driven since then. In fact, we went to Stanstead on Monday night to collect Kate, who spent a few days in Spain last week. He drove all the way with no problem at all. But it's the first indication of trouble. I always have to be with him, in case he needs me to take over. We decided that Saturday cast a pall over the whole weekend and further into the week in fact. This will truly signal the end of independence as he knows it. Why we were so shocked and surprised I don't know. In a way we're constantly on the lookout for these signs of further deterioration but on the other hand, I always feel ambushed. Maybe part of me is still hoping Roch will be different, somehow the disease will not take the usual course because it's happening to us and not to some other people we don't know. Rubbish of course.

Anyway, on Sunday I was sitting on our bed, applying make-up (best face forward). Roch was at his laptop, using his Dragon technology to compose a message. I absently (and rather rudely) commented on his sentence construction. Mea culpa. His reaction was more than I bargained for. He was really angry and swore at me loudly. I of course dissolved into tears and rushed out of the room (it really didn't help my mascara application). I knew I shouldn't have corrected him - how irritating for him - but I also felt his reaction was out of proportion to the offence. A little later, he apologised. I forgave him instantly. He wasn't angry with me. He was raging at fate and I rather conveniently presented him with a target for his pent up frustration and anger. We managed to talk it through. It's always the people closest to you who get hurt. I am not without blame myself. I've been irritable and short with him and I really don't want to be like that.

We made a rather special trip this week. It was a beautiful day on Tuesday and we were driving back from a shopping expedition. As we passed the little road leading to East Sheen cemetery, we made a spur of the moment decision to turn in and take the opportunity to investigate their natural burial place. Out came the wheelchair and we made our way through the cemetery in the sunshine. There is a small grassy glade, shaded with trees, where one can choose to be interred without a marker. It didn't feel upsetting because it didn't seem real. It's possible to reserve a spot there for five years and Roch is thinking about this. It's a sensible plan. Maybe he'll change his mind. Maybe the left arm had something to do with it.

A dream

Last night I dreamt that I was reading the book of Roch's life. In my dream I am excited about this because I know it means that I will find out how his life ends. In reality this is something which preoccupies both of us. In the dream I read the words of a review which describes his life as coming to 'a joyful ending' and my dream self is so glad about this. As I read, I feel guilt that I haven't always appreciated him during his life. I am impatient to reach the final chapter, and speculate about how the end could have been 'joyful'. Often in biographies the centre of the book contains photographs and so it is with this. There is one photograph which particularly strikes me. It is a photograph of Roch on what seems to be an Arctic expedition - complete with stick! Standing with a group of able bodied men in the icy wastes, wearing a thick parka, but unmistakably Roch. In my dream I suddenly realise how the end might have come - a natural end, engaged in a mission of exploration and I eagerly turn the page. But of course, that was the end of the dream.



This morning I described my dream to Roch. He told me about a person on PLM (Patientslikeme) with MND who died recently in her sleep. He feels encouraged by this. I noted his eager approval of the 'normal' dream death. There may be some of you reading this post who will feel it is morbid of me to recount my dream or perhaps unfeeling of me to have shared it with Roch. This is the reality of MND. It's a terminal illness and you can't help thinking about death and about how it will be for him at the end. It's important to be honest with each other. It's not something we talk about often but I know it's something he worries about. It's obviously on my mind too, or I wouldn't have had such a vivid dream.

Arsenal v Swansea

Roch and Tom have gone to the Arsenal match. Like last time, the plan was for Roch to drive to the Emirates, but that wasn't possible today. Shortly after I waved them off, I heard the key in the door. Left arm failed to cooperate. So they got a taxi. It's better in a way. Less stressful, less to worry about, but it's not a good sign. It's a blow.

Yesterday he stayed off work because of a bad night. I forced myself in although with incipient migraine. In my defence, with my meds it often passes off, but not this time. After an intense morning with many demands on my attention (don't get me wrong, I do enjoy my job), I realised at lunchtime that I would have to call it a day when my stomach lurched the very instant a colleague brought his lunch into the room (a usually delicious aroma of chinese food). I made my preparations and eventually left before 3pm. On arrival home I once again encountered the croissant I had gingerly consumed for breakfast, then retired to await relief, which came only today, mid-morning, leaving me exhausted.

Meanwhile, back to yesterday and Roch home alone. Not usually a problem, but he tells me that it took him a long time to prepare his lunch. He likes to do this, but yesterday he needed lots of rests. I need to be more organised and make preparations for these eventualities. Seems so obvious after the event. Note: frozen dishes, microwave meals, easy to prepare. It may also have something to do with the kind of thing he likes to cook, which involves lots of chopping and preparation. We will have to discuss less labour intensive dishes for days when I'm not around at lunchtime.

Well, at least Arsenal beat Swansea. I mean, there's only so much a man can take.

Blog Notes

Monday 5th September

We had breakfast at the hotel this morning. It was the first time as I watched him, that I thought he wouldn't be able to eat by himself. We sat at a table by the window, looking out to the gardens. There were very few people in the dining room to witness his struggles. Those who were present didn't seem to notice. The problem wasn't just cutting up the food this time. This morning he could hardly lift the fork to his mouth. He rested between mouthfuls. It was a shock. He did it by himself in the end, very slowly. He commented on how cruel it was for God to have given him this disease - a man who loves his food, especially a full English breakfast. I had no answer for him.

We also learned today that when he is in his wheelchair and it rains, his legs will get very, very wet. We need a raincover I guess. Pretty obvious I suppose, but it's the first time it's happened. We got caught in a heavy shower in Lyndhurst and I hurried him back to the car. I felt in control but I forgot that it might have been a bit scary for Roch as I fairly ran along in the wet! I'm not sure he entirely trusts me with the control of his wheels. Tom is the King as regards wheelchair pushing. But the sooner we organise him under his own steam, the better.

Thursday 8th September

There has been a car parked outside our gate for two days and a night now. We are waiting for Richmond Council to organise our disabled parking space and we don't know when that will be. Apparently they have to put up a notice asking if anyone has any objection. I don't know how long that stays there, but they haven't done that yet. I can't help wondering - are people just stupid? There is a ramp with handrails from the door to the gate. It's not exactly brain surgery to work it out. Or do they just not care? It's such a struggle for him to get from the car now, walking up the road any distance. Yesterday he had to park about five doors away and he told me that an old man walking slowly past with some difficulty himself, asked Roch if he needed assistance. He didn't have to tell me that he refused the offer. I just hope he doesn't fall on the way.

In the New Forest

3rd September

So we made it to the New Forest and we really are in a forest, lots of trees and lots of ponies!

A real find this afternoon, a country pub called 'The Crown and Stirrup' (great name). We stayed awhile. Despite a step down into the pub and another up to negotiate our way out into the garden, he made it with no real difficulty. A cold clean pint was its own reward. Even my tonic water tasted a cut above the usual offering. Tall trees rose gracefully behind the garden and the late afternoon sunshine came slanting through the branches.

The hotel is more than satisfactory but falls short of excellence due to a slight shabbiness. Faded wallpaper and chipped paint can lend an air of 'shabby genteel' which is acceptable but a mouldy shower curtain? No excuses. The linen, however, is crisp and spotless and I can almost forgive the shower curtain given the flawless evening meal. Absolutely delicious.

Earlier today I wheeled Roch along the main street of Lyndhurst which has a seasidy air and an abundance of Antique shops. Purchases included the obligatory Saturday guardian, a bottle of Merlot and a bird feeder made from a coconut!

Over dinner we covered a number of topics. We reminisced about our honeymoon in Crete and discussed Roch's future medical retirement. We touched on how bizarre it is to know what will kill you. We discussed spasticity. We take issue with the Chambers dictionary definition of the noun 'spastic': 'A person affected by cerebral palsy' ok but not everyone who is spastic has cerebral palsy or 'Awkward, clumsy, useless'. Roch asked me if he could now be classified as a 'spaz' (not a very politically correct term, but pure 'Dublinese'). We debated. The symptoms are minimal but does the very presence of spasticisty symptoms mean he is a spastic? I would say not on the above definition but he argues that it makes him feel 'awkward, clumsy and useless' so he is a 'spaz'. It remains in debate.

We congratulated each other on the fact that we were sitting together celebrating our Wedding Anniversary for the third year running since diagnosis, and he walked to the table in the restaurant aided only by two sticks. We admitted to each other that at the time, we didn't think that three years down the line he would be a) alive b) if alive, walking c) if walking, talking. Pause for the clink of glasses as we toast the slow progress of the monkey.

He tells me that Donna (the Hospice Nurse) has organised a week long stay for him in the Hospice in January. It's meant as a respite week for me. I am shocked. It seems too soon but maybe by January I'll welcome it. I can't help feeling that someone else probably needs it more. We may not accept it. I tell him that a week in the Spring might be nice. I would think about going to France with Maura. He is anxious to assure me that he has my blessing for such a plan, just in case, when the time comes, he is unable to speak. Who knows what thoughts go through his head. Good God, Roch, I say. Surely that is not imminent? No no, he assures me. But just in case. We wonder if Donna thinks he's 'fucked'. The steaks arrive and after an initial struggle, he manages to cut up his by himself. I venture to have a glass or two of rioja and I think both of us are glad that the bedroom is only a few yards down the corridor. Duly replete, we retire.

Blog notes

I've been keeping Blog notes in a little orange notebook. Sometimes I feel like recording a feeling, a moment, but my laptop is not to hand or it's just the wrong time of day. So I decided to add a notebook to the contents of my already overloaded handbag. Here are some jottings from the past week:

30th August

This morning, as I was dressing for work, I heard the sound of things falling and rolling across our kitchen floor, to the colourful accompaniment of Roch's swearing. I was aware of a feeling of irritation. I was feeling tired after a restless night and anxious about the working day ahead. I made my way into the kitchen to see him standing unsteadily at the open 'fridge door, at his feet a sea of baby carrots. He told me to finish what I was doing first and then come back to pick them up and I automatically retraced my steps to the bedroom, mascara in hand. Then I thought 'What if he slips on one?' So I ran back and picked them up. I could tell how frustrated he was, not just by the swearing, which had ceased now, but by the silence in the room. He sat at the table, looking sadly out the window at our garden. The new handrails are in place on the ramps now. It was an essential piece of work. They are perfectly functional. But somehow they form a barrier between the house and garden. The garden doesn't seem accessible anymore. I guess this is how it has felt for Roch ever since he began having to use the ramp. Now for me there is a physical barrier and I have to use the ramp too (occasionally I duck between the rails when nobody's looking). I don't like it but it's a small thing, after all. I don't expect he likes it much, either.

Standing there in the kitchen I notice that Roch's finger nails need cutting and, conscious that the Community Nurse is coming later in the morning to take bloods (for testing at King's College, as he is on Lithium now), I insist on cutting them now. (I am embarrassed to think his personal care may look neglected). He requests that I leave one long for nose picking purposes. He says this to hear my scolding protests and I do not disappoint. I cut all his nails. I'm getting good at this. Just before I leave for work the Toshiba TV man arrives. The TV for the bedroom has been fixed at last. As I depart, I hear Roch apologise for the mess in the bedroom and he follows the guy into the room, stick thumping heavily on the wooden floor. I leave him to it.
As I drive away I am filled with a mixture of sadness, anxiety and relief. If feels like a kind of escape but I wonder which feeling will overcome the others when I get to work. In the event, at work I settle quickly to my tasks and manage to focus on work priorities. I have very little time to dwell on the events of my morning so far, or to worry about my husband.

31st August

Well, 21 years ago today I was the blushing bride and he was the (believe it or not) bashful groom.
This morning I helped him to button his shirt. He went back to work today after an absence of six weeks. He had a disturbed night. Anxiety perhaps? So progress was slow. To save time we showered together. Nice for him, nice for me. As this disease progresses, the dynamic of our relationship will change, is already shifting. It's important to retain the small daily intimacies, I think. More and more I assume the duties of carer but I'm still his wife. How much easier to accept assistance with hair washing (he has difficulty lifting his arms) in the shower when provided by equally naked wife! Very eco-friendly, as we save on water too.

1st September

I came home from work yesterday longing for some space, some time to myself. Work was hectic. In and out of meetings, more work generated by each. I find my new role challenging, but stimulating. I'm beginning to relax into it now, starting to enjoy it - but it's non-stop. I got off the train at Whitton, to pick up food for dinner along the way. I was surprised that I had the energy and the interest to think about it. For some reason, I quite fancied making rice pudding (comfort food? Memories of Friday mealtimes as a child - that gorgeous crispy baked skin on top. I loved to break through it with my spoon to the creamy rice beneath and smell the steamy sweetness. As I walked throught the quiet streets around our home, I made a conscious decision to 'pay attention'. I noticed the woodsy autumn smell (so early!), the pleasant cool air on my skin, the vivid colour of a single rose. Live in the moment. It doesn't come naturally to me. It's easier for me to walk along, head down, in a cloud of anxiety. Why do I forget that exercise helps, that just being outside can help?
Tell you what else helps - getting my hair done! Lovely visit to the hairdresser this morning - or should I say, my 'colourist'? She's really more like an old friend. Not looking quite so faded anymore. Thank you Gabriella.

2nd September

I was reading Eleanor Coppola's 'Notes on a Life' last night, a gift from a friend (many thanks L). I find we have a lot in common. I keep coming across passages which resonate with me. She says that she couldn't understand why she wasn't automatically happy when she married and had children. She consulted psychiatrists and psychologists, one of whom was a woman and asked what was wrong with her. She had it all, she told them - '...a loving and successful husband, a big house, healthy children. I was mystified by my depression. Not one of them said, "You're a creative person, you need to pursue your creative life or you'll get depressed."'
I'm not comparing my creativity to that of Eleanor Coppola, but I realise that at last I am trying to carve out a space in my life for my creative self, create a physical space (a refuge) where I can rest and work (I want to populate this space with beautiful things, possessions with particular value to me), but also forge some time, time to indulge my 'creative child'. I am doing this to survive. Ironically this will become more difficult to achieve with the passage of time. It will also become more vital to my well-being and the well-being of those I care for. (Eleanor Coppola is the wife of the famously creative Francis Ford Coppola and the mother of Director Sofia Coppola).