Post holiday blues...

Well, we have been home now for almost two weeks. The mood (Roch and me) has been down, on the whole. Post holiday blues? I've been feeling stressed about my new role in work and in a way I think that's a good thing. It's taking my mind off what's going on at home. I've been quite preoccupied. In another way I suppose when my focus shifts from him I don't feel in tune with his mood or his needs. Things will settle down. I'll find a balance. He hasn't gone back to work yet. He's not feeling up to it, mentally or physically I think. It's funny, recent contact with professionals - they've all said the same thing. "He's doing so well." I guess he is doing well, relatively speaking. So why don't I feel more cheerful? He's still able to drive, he's still working, he can still enjoy his food and drink. His breathing's ok.

The strength in his arms is less and he's lost some weight. His upper arms are looking skinny and his legs are losing muscle - but he's still looking good. When he's sitting down, holding forth, he looks almost like his old self. I notice a tendency some people have to rush to do things for him, rush to assist him. I understand the need to do this, but he can still speak and he usually asks. It's tempting to try to forestall his need to request help but constantly hovering about and doing everything for him makes him feel even less able and more of a crock. It's a challenge for all of us.

He has fallen recently. I was at work and Kate and Simon were with him. It was in the kitchen and I think it gave them quite a shock. It gave Roch a shock too. Just one of the those things, his legs went from under him. I thought when I heard, why did I not think of talking to the kids about what to do when it happens? Never occurred to me. He didn't hurt himself.

His neck's been giving him trouble for a while now. It's almost always sore and the cramps started there a few months ago. It's beginning. There's no need for a neck brace yet - the muscles still working would just give up the ghost if he used one constantly. We must ask the Community Nurse about a proper neck pillow. She did organise some very comfy cushions, two of which we have used to raise the old green sofa in the kitchen. He couldn't sit there any more because it was too low. Rachel, our Occupational Therapist has taken some measurements for raising the bed. It's getting difficult for him to get in and out of bed - that's too low, too.

We're beginning to think about an SDC (Self Directed Care) package. Basically, that's where the Council give the patient a sum of money to use for privately arranged care. That level of care is not required as yet, but we need to plan ahead. An assessment has to be carried out by a Social Worker and a Carer's assessment also has to be done. We talked to Rachel about this on Friday. She thinks he's doing well.

I was proud of my preparations before setting off for Dublin. We borrowed a ramp, the folding toilet frame was carefully packed up into the boot (boy, did that come in handy), radar key for public toilets along the way had arrived in good time, emergency kit and change of clothes in the car, first aid kit etc., wheelchair of course. We even managed to bring some clothes with us! It all went well. But you know what? It's just so sad. The doctors say "You must be positive."

Since coming home we've been to King's College - he's come to the end of the Lithium Carbonate trial. So now he's really on lithium but it will be April before we find out whether he was on lithium for the eighteen months or not. That was some trip. Thank God for air conditioning in the Berlingo. I drove across London in searing heat and I made the same mistake as last time, following Mrs. SatNav's instructions. This time I did my own recalculating and did a U-turn in double quick time. But we were still late for the appointment. He's not eligible for new trials as it's more than two years since his diagnosis. It's another little sign of the time passing.

Last Monday we spent the night in the Royal Brompton Hospital, where Roch was the subject of a sleep study. The purpose of the study was to discover whether his breathing is being compromised while asleep. Perhaps this is why he is sometimes so tired in the morning. Neither of us was looking forward to it but in the end it turned out to be less stressful than expected. All the staff were very kind and helpful, the room was bright and airy with a big window - there were even trees outside and we were treated to the sight of a spectacular rainbow at one point. I found that quite cheering. The visit even felt like a bit of a break. There was quite a lot of waiting around to do, just sitting in the room. So we read and rested and had some awful cups of hospital tea and coffee. The nurses and technicians explained clearly what was going to happen and it happened exactly as they said. They did a lung capacity test (good), an intern (she looked about Kate's age) took blood from his wrist (oxygen levels good) and a technician wired him up in preparation for the study. Later, a second technician arrived and connected him to a machine by the bed. With small tubes in his nostrils, a sensor attached to his ear and manifold lines going to a device tied round his chest, he was all set for a good night's shut-eye! The ear sensor monitored heart rate and oxygen levels. We tested the heart rate monitor at one point by the simple expedient of me lifting up my tee-shirt for about three seconds - but his heart rate shot up so rapidly I decided the experiment had been successful (still got it...) and refused to indulge him with further entertainment of that nature in case it affected the results of the study.

Forbidden to leave the bed from 8.30pm until he was detached from the machine in the morning - but that was no problem as he had his willing hand maiden there for the night (that was me, in case you thought the hospital provided one). I think his sleep was fitful, although no sooner had he remarked that he would never get to sleep at all, than the room was filled with the sound of his snoring. Happily, I had remembered my ear plugs and despite a rather unsteady camp bed, which occasionally threatened to fold up with me in it, I did get some sleep.

The Consultant gave us the results of the study in the morning. We liked her. She sounded like she knew what she was talking about. She says he's doing well. She told us that although there had been some occasional dips in oxygen levels during his sleep, these were within normal limits. However, we will go back to the Brompton for a morning soon, to be instructed in the use of a non-invasive ventilator, just in case. Then they will provide us with a machine, to keep at home if needed. It's an insurance policy and we both agree it's a good idea. Another sign of the times. Another step along the way.

A funny old trip

Well, we made it to Dublin and we've been staying in my brother's house since Thursday night. We can't stay at my mother's anymore as it's not suitable for Roch. So a big thank you to Dermot and Emer, because being able to stay here means a lot. Roch feels safe here. It's like a home from home for him. There's even a Nespresso machine...


It really doesn't seem a week since we left London for Holyhead. We broke up the journey and stayed at a Travelodge hotel in Wales last Wednesday night. We had booked a disabled room and they did their best - shame he couldn't use the shower. To use it, you had to step into the bath. Well,that's completely out of the question for Roch. No amount of hand rails will help if a person can't lift their feet up. Happily the disabled cabin on Irish Ferries had a great wet room attached. Shame the cabin itself was so tiny with no turning room for the wheelchair...


The Ireland visit feels different this time round. Roch asked me the other day if I thought his condition had worsened since we came to Dublin. I don't think it has. But somehow being out of his 'comfort zone', has thrown the condition into relief. He seems worse here. The children have noticed and it's not easy for them. It's not like other holidays. Dad can't do things like before and they feel a bit lost.


There was a big family party on Saturday - all Roch's family gathered together to celebrate a 21st birthday and also to celebrate Roch being home again. I think they were shocked when they saw how difficult it is for him to walk now. There has been a change since Christmas, which is when some of them saw him last. But it was a great day, and I know Roch felt the warmth of the love and affection around him. He really felt valued. Many thanks to Paudie and his lovely wife Ger who went to such trouble making sure everything was in place for him, including ramps at the front and back doors.


But it's a funny old trip. Everything is so familiar - it's us who are different. It's hard to keep the sadness at bay. I think it's worse in Ireland. Why is that?


Today, he and his brothers and sisters have set off for Kilkenny, to see the Holy Man (Fr. Roch, Roch's uncle). It was something Roch was very keen to do. Fr. Roch has been very faithful since Roch's diagnosis. They left here a short while ago, two cars in convoy. I hope they have a good day. I know Roch's in good hands.

Never a dull moment.

Last Thursday I attended a Carer's Workshop, organised by Richmond Carers. This time it was First Aid (British Red Cross Qualification). The trainer was excellent. I'd want her there if I needed first aid, let me tell you. I am enormously pleased that I was able to attend and that I passed! Having done it, I now wonder how on earth Tom and Kate survived their childhood as I really only had the faintest idea of what to do in a first aid emergency before last Thursday. Lucky, I guess. Tom is very lucky. I did know it was important to tilt the chin of an unconscious person to keep the airway open - but I only knew it because a paramedic told Roch to do this years ago on the horrific occasion when Tom stopped breathing and Roch rang for an ambulance. We didn't know to do it until we were told. Happy story, Tom recovered. Now I know exactly what to do. It all came back to me as our instructor brought us through the correct procedure and I felt a bit wobbly for a moment.

We practised CPR on some very unlife-like dummies - it's really not as easy as it looks on TV. Casualty has a lot to answer for.

So there we are, settling down for the night and I remark to Roch that I am now equipped to deal with a medical emergency and can confidently carry out CPR if necessary. He's reading and without looking up he says 'Maybe I won't want you to.' Typical. 'Well, be sure and let me know,' I reply. After a pause I ask a serious question -'At the moment you'd want me to, right?'
He thinks for a moment. 'Yeah, I can still get a lot of pleasure from life, and give pleasure too, I hope.' He returns to Ambrose Bierce. 'Yeah, you can go ahead at the moment.'
'Well, let me know if it changes,' I say.
Never a dull moment.

The monkey's reach extends...

For some time now Roch has been trying to reach a decision about work. Fatigue is becoming more of an issue and he feels he is less efficient now - simply reaching for a file, holding a file - the things we do hundreds of times in work without thinking - are becoming impossible for him. There may be answers to the practical problems in the short term and no doubt some of these are coming to your mind as you read this. But the bottom line is that he is losing an important part of his identity. Roch was in complete control of his job - intellectually he is still in control but his body is failing him. It is too tiring, soon he will not be able to get through all the work - already he feels diminished and the thought of having to relinquish this part of his life, this huge part of who he is, is deeply sorrowful for him. There are short term solutions, as I say, and we talked about this last night - but essentially his working life is beginning to draw to a close and there is nothing good about this. It is not fair to be robbed of this so early.
Here is a man who reached an excellence and expertise in his position many would envy, who earned the healthy respect of his professional opponents and inspired the admiration and affection of his co-workers over more than twenty years. Roch there are no words of comfort as you see your professional life slipping away from you - but you will always have that respect and you will always have the admiration and affection of your co-workers and the gratitude of the multitudinous 'punters' you have dealt with over the years (ok some of them won't be so grateful, but you know what I mean). Few can boast such a successful career.

The Launch of the Report on Specialist Palliative Care

http://mndcampaigns.org/blog

At the APPG Reception

If you go to the blog page of the above site you will be able to read Julia Franklin's account of the reception held by the All Party Parliamentary Group on MND last Monday. The Report was launched on specialist palliative care for people with MND and this was formally presented to the Secretary of State for Health, Andrew Lansley. You may recall that Roch gave evidence before the APPG last year and so we were among those invited to attend the reception. It was the first time we ventured out to such an event with Roch in the wheelchair and we were both nervous about it but in practical terms, we encountered no difficulties. The reception was held at No. 1 Great George Street, just off Westminster Square - may I say, the perfect location if some of your attendees are wheelchair bound. On approach it looks inaccessible, having a flight of stone steps up to the entrance, but at the touch of a button these steps recede in turn to disappear into the wall, and are replaced by a lift platform. Very 'Potter-esque', to coin a phrase.

Roch at the APPG reception to launch the Report

It felt odd to be standing by his wheelchair. There were moments, listening to the speeches, when I almost felt there had to have been a mistake - this really shouldn't have anything to do with us - Roch and Deirdre. It felt slightly surreal at times.

Ashley Morgan's speech was very moving. She was diagnosed with MND eight years ago and as Julia says, is a powerful advocate and an inspiring speaker. At times it was not easy to hear. It is not easy to hear people talk about palliative care and end of life issues when they concern your husband directly. Not easy for her to talk of these things, as they affect her directly, too.

One thing I will take away with me was how she spoke of her reaction to the diagnosis. She told us how she had wished she had been one of those people in whom the disease progresses at speed - so it would all be over soon. But now she is grateful for the time she has been given, she is living with MND, not dying of it. I can't help remembering how Chris Woodhead said much the same thing when we heard him speak at an MNDA reception at the House of Commons and how he spoke of being surprised by his feeling of contentment, sitting in his wheelchair in his garden in the sun. Ashley spoke of MND as a gift which makes her treasure life more so that she makes the most of every moment. But there will come a time when it will become not about living with MND but dying of it and it is a frightening prospect, especially when we know that end of life care varies wildly amongst Primary Care Trusts. We've all heard the horror stories, medical staff with no knowledge of the disease, no expertise or understanding. The dying patient suffers and carers are rendered powerless because they are not listened to. Ironically, in most cases, the carer knows more about the disease as it affects their loved one than the nursing staff who attend them.

So although it was incredibly moving to hear Ashley speak of how she has conquered the limitations of MND to live as full a life as possible, I think she spoke most powerfully when she spoke of the limitations of the services provided at end of life and how important it is to ensure that when the end does come she can face it with dignity, without suffering and, if possible, at home, surrounded by those who love her. It's what we wish for all of our loved ones who live with the disease. It's what we would wish for ourselves, isn't it? So that was why we were all there - to raise awareness of the issues around end of life and palliative care because we need to ensure better palliative and end of life care for all people with MND and their families.

We need to lobby our MPs to sign Early Day Motion EDM 1943 to support this cause, and ask them to write to their local Primary Care Trusts to find out about availablity and quality of services at a local level.

Please click on the link above and read Julia's account of the reception. Is there anything you can do to raise awareness of the issues? You can follow the link at the end of her blog account to email your MP and find out more about joining the MND Association's campaign.

If you'd like to read the report, click the link below (see if you can spot the input from 'R, 48, London').

http://http//www.mndcampaigns.org/assets/0002/8370/APPG_Report_final_3_.pdf

Loving Kindness

I've been thinking lately about what helps me as a carer. It's a subject I revisit with my counsellor frequently. What can I do to help me survive? Because it is a battle for survival. What strategies can we come up with to get me through this, to keep up my physical and emotional strength - because believe me, there are times when I seriously question my ability to carry this thing through.

Well, for me the first clue to survival is in the second sentence above. I talk to my counsellor about it. This is a subject that came up in conversation at the last Branch meeting. I was talking to the wife of a person with MND, who explained that their GP was quite willing to refer her husband to a counsellor but told her that until she reached some kind of crisis point, this service would not be available to her. Back in August 2009, my GP helpfully referred me to a counsellor at my request (I broke down in her office so that probably helped) and I did get an appointment for an assessment about a month later. I attended this and was told they would get back to me within a few weeks. About six weeks later, I called them and a very rude woman told me to wait my turn "We haven't allocated a counsellor yet". At which point, I thanked her politely and immediately decided never to darken their doorstep again. (I can be pretty determined). I was lucky. A few weeks later, a colleague recommended a private counsellor and I have been seeing her ever since. I appreciate that not everyone could do this. At present I have the means to continue my sessions. I don't go every week but I go fairly regularly and I know she's there if I need her. I am tremendously grateful because I believe for someone in my position, it is essential.

It's not good enough that people are told 'Come back when you are in crisis'. From the moment of the diagnosis I believe that the grieving process begins. You grieve for the life you thought you had together, for the loss of all the plans you had made. From that moment you live in the shadow of the loss to come, and you carry a burden of sadness everywhere. I went to my counsellor full of fear and sadness and I am still afraid, and I am still sad but she helps me to deal with my feelings so that I can continue to care for Roch and deal with the changes, and make sure Kate and Tom are okay and still go to work and take on more and more of the household tasks and responsibilities - and not explode.

But we also talk about strategies for coping - ways to stay strong and I find this immensely helpful.
She would really like me to meditate more, and I have been trying - I think if I could commit to this, it would really help. I don't know about other carers, but my mind never stops. I operate at a constant level of anxiety (my anxiety levels have always been high, even as a child) and my head buzzes with thoughts, worries, 'to-do' lists, 'not done' lists. Twenty minutes of meditation, quieting the constant inner voice would be the perfect antidote. I find it difficult, but I am convinced it would help and I will persist. It's not a habit learned easily.

As a person forever on the go, I have learned to stop. I love to lie on our old tatty green sofa in the kitchen, facing the open doorway, where I can see and smell our lovely garden, now badly in need of cutting back (see, there I go - 'to-do' list starting already). I give myself twenty minutes there sometimes - occasionally I doze, which is not a bad thing. Often the cat joins me and I find his presence oddly comforting. I am learning to take my ease when I can. I have to. This is hard for me. I have had to learn to give myself permission to be good to myself.

My counsellor has given me a mantra - 'Loving Kindness'. Don't be hard on yourself, she says. Be good to yourself. Believe that you deserve it. Accept help when it is offered. I am getting better at this. Help from neighbours, support from friends - I have never been good at it. I want to be able to do it all by myself but I just can't. I won't be able to survive if I do. So now I must learn to ask for help and accept help that is offered.

I've mentioned recent contact with Richmond Carers. I can see that this will become more useful as time goes on. I mean to make use of them! I think at the start I couldn't see myself wanting contact with other carers, but I was surprised at how much it helped me when I met with other carers recently.

It helps enormously to have some kind of interest, something just for me. I have rediscovered my writing. I have created a space of my own in our old bedroom and here I can scribble and muse and ponder and try to create. It doesn't matter what I write or whether it's any good or not. But it's just for me. When I'm involved in writing something, I get a little bit obsessed with it - so I'm cooking or washing or pegging the clothes on the line, but in my head I've got some character acting out a part. Would she do that? I ask myself or I must do a bit of research about that, I think and I dash to a notebook and jot something down. Then I go back to my task. I really don't think about anything else until I think it's done - it's never done to my satisfaction, but I reach a point where further fiddling just ruins it. To have something for yourself makes a big difference, I find. I joined a creative writing class and try to cycle there once a week. It's fun and for those two hours I really don't think about anything else.

That's another thing - cycling. Exercise. I've never been very good at it but if I'm going to get through this I've got to make some attempt to keep fit. Hence my beautiful bicycle, Betsy.

I recently decided to take my health in hand, and went to my doctor, to register as a Carer and to talk about how tired I felt and to get some checks done. She was really sympathetic and helpful and we agreed that I seem to be doing all the right things. The results of the blood tests are back (lipids are up - low fat diet recommended) but everything else is normal. I have to stay healthy, otherwise I won't be able to look after anyone.

I have good days and bad days. Sometimes I think I'm doing okay and feel I can cope. Other times I feel lost. This morning I felt a bit like that - I wrote in my private journal about feeling sad and panicky - I wrote that I felt grief-stricken. Then I reminded myself that 'the worst hasn't happened yet', and I dried my eyes and made one of my lists. It always helps me to get something done. The first item on my list was 'Blog' and so I did.

A visit to the Royal Brompton

It's an anniversary today. Two years now since the diagnosis. That's pretty good. It's reason enough to celebrate. He's just beginning to need the wheelchair, he's still working, still able to enjoy food and drink. We're lucky I guess. I had a look at my post of a year ago. Roch was using the two sticks, and getting used to the rollator. It was just before our Venice trip. There's no doubt that the monkey is getting stronger but we're not done yet, not by a long shot.

Tuesday saw our first visit to the Royal Brompton and Harefield Hospital. One of the Neurologists at the West Middlesex referred Roch there for baseline assessment of his breathing capability. On arrival, we had some difficulty locating the disabled spots. Roch had booked one in advance as advised. When we eventually found them, we were dismayed by the very narrow side street in which they were situated. It looked so unlikely that we weren't sure we were in the right place. But no, we had arrived and I duly secured our parking permit from the 'Transport' office, having been directed there by a rather dour receptionist. Back out to the car and organised the wheelchair - very narrow pathway round the corner to the ramped entrance (our Richmond Occupational Therapist would never have approved the gradient!).

We were bound for Lind Ward on the fourth floor. When we got there it was very busy and the corridor (where most people were waiting to be seen) was pretty full. I really had no idea what to expect and at first it felt very alien and depressing. We didn't have to wait for long, however, before a nurse called us into the ward and there they did the breathing tests. Two nurses applauded Roch's efforts as he blew twice into a tube and the results of his lung capacity were recorded on a graph. Then we were sent off to wait for a blood test, after which, we were told, the consultant would see him.
So we went back to the corridor to wait. The afternoon did have its lighter moments, I have to admit. You meet people in a hospital waiting area. Yesterday we met 'Nanny Biscuit'. That's what her grandchildren call her. I think she's what's called 'a bit of a character' and she likes to talk. We encountered Nanny in the corridor about midway through our visit and would you believe it, we three were the last members of the public in the department! If a kindly nurse going off duty hadn't patiently held the lift door open for us as as we gingerly edged our way away, we'd still be there, listening to Nanny Biscuit!

Roch had been given the option of having blood taken from either his wrist or his ear. He didn't fancy the idea of being bled from his ear, so he said wrist but we had been waiting a while when the consultant appeared and explained that there would be someone available sooner to take it from the ear. So from the ear it was. Ger, my lovely sister-in-law has since explained that they needed arterial blood to measure the oxygen levels and she also said that it's really painful when taken from the wrist.
By the time we were called for blood to be done, Roch was the very last patient to be seen. But in a way, this made it easier. The department was almost deserted, the staff were delighted because they were nearly at the end of what must have been a very long (and I suspect very trying) day and it made it so much simpler to negotiate the corridor with the wheelchair. A very cheery male nurse smeared some cream on the ear (advising us that this was to bring the blood to the surface and not to dull the pain) and then, using a small razor, made a slit in the ear lobe (ouch!). Then he expertly directed the ever-increasing droplets into a thin tube. Roch then had a HUGE bandage attached to said earlobe with an enormous blue plastic clip. Oxygen levels slightly below normal but nothing to worry about and carbon dioxide levels are normal.

We were then brought straight in to see the Consultant, Professor Polkey and here we hit pay-dirt, as they say. This is a man we can deal with. He knows what he's talking about and is not afraid to address end of life issues with us. He welcomed us, explaining that he would be with us on the path ahead. We were reassured by his obvious experience and expertise. He was matter of fact about what lies ahead and made it easy for us to talk about a very difficult subject. This is the man who will monitor Roch's breathing capability and assist when it becomes compromised. Much of our conversation was around how much assistance Roch might welcome and his honesty and direct approach was actually very comforting. Roch and I will go back in two months' time so that they can conduct a 'sleep study' to see if his breathing is being affected while he is sleeping. The graphs show that his lung capacity is actually still pretty good, which is reassuring.

Again, we have been lucky. Those of you who have been with us from the beginning may recall posts in which I speak highly of Professor Al-Chalabi, our Consultant Neurologist at King's College Hospital. Professor Polkey now joins him in our personal gallery of Consultants We Trust. It's important to have people you can put your faith in. These are the people who strangely enough, give us comfort. The people who offer some hope that the certain end of the uncertain path which lies ahead may yet be reached with dignity and respect and the absolute minimum of discomfort and suffering.

I forgive you, Royal Brompton, for your poxy parking space, your crowded corridor and your dour receptionist. Meeting Professor Polkey made up for it all.