Daily Life

We went shopping last weekend. The idea was to go to Squire's Garden Centre, but before getting the garden stuff Roch wanted to go to Cotton Trader's to look at a pair of shoes he thought might work with his 'foot ups' during the summer. It's hard to get suitable shoes that don't look like retirement home footwear. We parked in one of the 'disabled' spaces, not too far from the shop, so that Roch could use the sticks. The threshold wouldn't have been a problem for the wheelchair, but space was limited inside and besides, he just didn't want to use the chair. Inside the shoes were tried on (seating in a nice discreet corner - so not too embarrassing for him that I assisted him in taking the shoes on and off) and then he saw some shirts he liked. We made our way slowly round the racks of clothes and Roch chose some shirts to try on. So far so good. Inside the changing room there was a seat, so I closed the curtain on him sitting down. Every now and then I checked and luckily the three chosen items were all a success. He had to sit for a moment to rest, having tried on each garment in turn. Three shirts. No wonder his eyes filled.


He recovered himself quickly and made no protest when I suggested we bring the wheelchair into the garden centre. It's not difficult for me to push or maneouvre. It was a Sunday and the place was pretty crowded but once we were out in the sunshine, amongst the herbs, flowers and shrubs, it felt ok. It's funny, we went to Squire's quite soon after he was diagnosed and I remember noticing that there were quite a few older people with mobility problems. I pictured myself then with Roch in a wheelchair, joining this elderly disabled community at the garden centre. It upset me. But you know what? It was fine. I enjoyed myself and I don't think it was as hard for Roch as he had feared. I hope not. One thing I've noticed is that as I'm quite small, it's easy for me to drop a little kiss on the top of his head, or bend just a tad to whisper something in his ear. I think he likes that.


Today we ventured to Waitrose with the chair and I've noticed something interesting. People seem to be much more understanding when they see him in the chair than when he uses the rollator. It's like they view the rollator with some suspicion. They don't 'get' why someone like Roch has to use it - but they can somehow comprehend the wheelchair.


It does mean we can get out and about more together, for longer stretches of time.





I realised today that I have to be more organised - we have to be more organised. Roch started to cook lunch for himself and Tom, but although he can make a start with grilling food, he can't really turn it anymore or keep lifting the grill pan in and out of the oven, so I took over. I had planned a different lunch for myself and as I organised their lunch I realised just how hungry I was. In the old days, Roch would have just cooked his lunch and I would have prepared mine. No problem. Now I was grumpy because I was hungry. I caught myself feeling irritated and then I realised that it could have been avoided with simple planning. This is the way it is now. He can't do things for himself like before. Like the aeroplane safety drill - 'place the oxygen mask over your face before assisting other passengers' - well, organise things better, feed yourself before cooking for Roch! It's not exactly that I forget my role as carer, I just haven't got used to planning ahead.

Strong Emotion

He is angry and that doesn't surprise me. So why was I so taken aback by his rant last night? He has dealt with all of this in such a reasonable, practical way. He is so brave and he is so determined. I have even, on occasion, suggested to him that he admit his anger to himself. So why did I sit in shocked silence when I came upon him in the bedroom, sitting with his laptop, and the rant commenced? It is my business to deal with people's emotions and I pride myself on how I can help and support those who come to me for help. I suppose it's different at work, you're prepared to deal with strong emotion. It's different when it's your spouse. It wasn't directed at me, he wasn't angry with me but I've always found anger very hard to manage. It scares me, it makes me defensive and I wasn't prepared to encounter it in the bedroom.
What led to the outburst? The bloody dragon technology. Now it's making me angry. It took him forty minutes to create a facebook message which should have taken 3 minutes to write. It would not cooperate. He was frustrated and angry with it but it was so much more than that. He is angry with - what? Fate, life, The monkey? It also made me realise how frightened he is. He is afraid he will have to rely on this stupid, faulty, patchy software when he can no longer type himself, when he won't even be able to rant anymore. Yesterday he looked into the future and it angered and frightened him.
I'm sorry Roch, it took me a while to be present for you. I objected to your use of a word we both know I hate, even though it was not directed at me personally. What a basic mistake! That directed your anger at me for a few moments. I managed to to listen and tried to acknowledge how you were feeling and what was going on for you but I could have done better.
Today I think about how frightening the future must be for you - I've thought of that before, but last night was a timely reminder. You are strong and you are determined but you're not superhuman.
One thing is certain, we must make sure that the equipment and software you are using works efficiently and how right you were when you raged at the people who are responsible for fixing it, and haven't. No, they don't know what it means to you, how desperate you must feel, for them it's 'an IT problem' but for you, it's life or death of a sort. So we must focus on how to make sure they (or others if they can't) can get it right.
And RAGE if you have to - I'm there for you - and there may be other places you can bring your anger, and other people who can listen and help.

A visit to King's College and I learn something new.

Roch tells me that he feels he is standing - correction - tottering - on the edge of decrepitude. It's true he is so much slower now. I often ask him how he is, how he is feeling and he doesn't give details, just says he's ok. So there are times when I look at him and I really don't know how he is - I know how he seems to be on the outside, but how he really is, I couldn't tell you. At times like that I feel a little disconnected from him. Maybe that's ok with him. He doesn't have to tell me. If people ask him how I am, he says "I don't know. You'll have to ask her." It's because I don't really delve deep enough to know how I really am. Sad, yes. Frightened of the future. Yes. Further than that - I'll have to work it out with my counsellor... Occasionally I ask him if there are any changes, and then he'll usually tell me. Hospital appointments are instructive and I learn a lot. Today we went to King's College Hospital for two appointments. The first was so that they could carry out an EMG test. Professor Al-Chalabi had asked Roch at his last appointment if he minded this test being carried out again. It's not pleasant. It is one of the tests they do when they think a person may have MND and it's unusual for someone to have the test twice. I think Professor Al-Chalabi is interested in the way Roch's illness is presenting. If Roch had refused to have the test again, he wouldn't have pressed the issue. I think Professor Al-Chalabi is tying up some loose ends. So what's an EMG? Well, it's Electromyography, to give it it's full name, which is the study of the electrical activity in your muscles when they move. The activity is recorded from a fine needle which is placed in the muscle. As we know, muscles work because messages are sent to them from the brain via the nerves. Nerve conduction studies are tests to measure your nerve reactions and to measure how fast your nerves conduct these messages. The first time Roch had an EMG was at Charing Cross Hospital about this time two years ago. Unfortunately the experience was made doubly unpleasant because the person carrying out the test didn't have much of a bedside manner. Happily, today was different. Professor Mills carried out the test. To those of you who work with me I say, he reminded me of Neal. I don't need to explain further to you! Professor Mills has a gentle, self-effacing manner and we both immediately felt at ease in his company. He carries his professional knowledge and expertise lightly but as with Professor Al-Chalabi, he is clearly expert and so his patient feels safe with him. We met with nothing but kindness from the nursing staff and from him. I found the procedure very interesting to observe and took notes for the blog. I think I worried Professor Mills a bit! He started by putting a red velcro strap around Roch's right ankle and I thought how thin Roch's ankles are now. He tested a nerve in the right foot to start with and continued up the body on both sides, measuring the speed of conduction in the nerves. He applied small electrical pads to the skin on various different parts of Roch's body in turn, foot, leg, arm etc., and the nurse placed a strange contraption on Roch's head, at a sign from Professor Mills. He gave Roch instructions; "Push your knee down into the bed. Relax your arms, drop your head back. Push the knee down gently." Meanwhile the nurse would hold the alien-looking helmet device on Roch's head. He was measuring the time it took for messages to get from brain to muscle. Right knee - 26.7 milliseconds; left knee 27.3 milliseconds. Within a millisecond on the two sides. Then he turned his attention to Roch's arms and a different contraption (slightly less weird) was held on top of his head. (At this point Roch declared "I'm ready to talk now!") Then a fine needle was placed expertly by Professor Mills into a succession of muscles in turn (he never faltered in finding the correct muscle point at which to place the needle), occasionally (ouch!) sending the needle futher in. The needle was placed in Roch's shoulder, near his neck ("Now shrug, relax your shoulders") and also on his throat ("Put your tongue against the back of your lower teeth, close your mouth, now open your mouth, put your tongue out"). I could see the Professor's screen where the results of the tests were appearing - but it meant nothing to me of course. Just a series of zig-zagging lines. Throughout the procedure he was careful to check in with Roch. Afterwards Roch said it had been 'a piece of cake' compared to the first time. He really had not been looking forward to it. The results of the test will go to Professor Al-Chalabi and no doubt he will talk us through them in July. It will probably make very little difference to us, but it may provide him with further information about how the disease is presenting in Roch. Many thanks to Professor Mills and the nurse who assisted him, for making it much less of an ordeal than expected (and no-one was scary at all!) We brought the wheelchair today. That's the first time to King's College. Last time was the first time we drove. Roch is so right. He is in the Country of Last Times. No more public transport, no more walking from the car park to the hospital building. So we made our way to see Andrew, who is the nurse Roch sees for the LiCals trial. It is month 15 and only 3 more months to go on the trial for lithium. This is where I learn a lot. Andrew takes his blood pressure, takes a blood test, sometimes carries out an ECG (but not today) and then we come to the questionnaires. Always the same questions, but over the months, the answers have become different. Walking, turning in bed, swallowing, cutting up food, going upstairs, dressing/washing. Can he do these things a. with no problem at all b. with some assistance, but mostly by himself c. not at all - I paraphrase, but you get the idea. So this is where I hear how he is really doing. The other day I watched him cutting up his food. He doesn't like me to help him, unless it's really necessary. Somewhere inside I felt an ache, a kind of pain. It hurt me to watch him as he held the knife and fork with concentrated effort. It is such a struggle for him to do so many things by himself (c. not at all or mostly b. with assistance). I really don't know where I will find the strength to watch the rest of his decline. I only know I must find it somewhere. Actually, the physical stuff I know, mostly, but the second set of questions are about how he is doing in himself. This I find interesting. He cannot say 'Ok' to Andrew. Is he cheerful a. all the time b. most of the time c. none of the time? Today I discovered that he feels like something bad is going to happen a lot of the time, that he is anxious a lot of the time, that he feels low more often than is obvious. None of this surprises me. I know that he feels he is tottering on the edge of decrepitude. But he can still find the humour in things 'most of the time' and is cheerful 'most of the time'! It was a cheerful drive to the hospital. We enjoyed the sunny day and thanks to our several detours and Mrs. Satnav's recalculations, we drove by Buckingham Palace and along Horse Guards Parade, past the Houses of Parliament and over Westminster Bridge. It was fun. When I was in Dublin, he posted a link from youtube on Facebook. It was a song for me. 'Just another day without you.' Jon Secada. It's not like him to be sentimental and I was touched. Last night, in bed he turned to me and said "We have plenty of time left together, don't we?" "Of course we do," I replied. "Of course we do." We do. Don't we?

The kindness of strangers - and two tidy Bridies...

I have spent the last few days in Dublin, visiting my mother. Two of Roch's brothers came to stay with them here while I was away. Often when I've been away my return is met with - let's say - a bit of housework to be faced. This time was different and some words of Mary Maher came to mind - the 'tidy Bridies' had been at work. Thanks guys and thanks to Eoin for all the jobs done around the house and garden. You can come anytime mate - I'll have a list waiting...! All went well in my absence and I think Roch really enjoyed himself. They noticed that he's slower and that he gets tired more easily, but I think they were pleased that he seems in good form. He does seem in good form. I don't know how he manages it. I think he may be keeping the monkey at bay with sheer will power and bloody mindedness! It's funny but when I'm away I find I can't fully relax. I'm really not at ease unless I'm here. Maybe it's just me being a control freak but I'd like to think I just miss them a lot. We went to the AGM of the local MND Association branch a couple of weeks ago. I always have to brace myself to face these meetings, but usually when I get there I'm ok. So far I've found them a bit of an ordeal, some less than others. This one was the usual AGM kind of stuff, followed by an interesting presentation on the medical research side of things. I find the meetings more helpful and easier to negotiate when there's a focus of some sort. Some familiar faces were present and some new ones. After the presentation I introduced myself to one couple I hadn't seen before. I know what it feels like when no face is familiar. He looked like he was at a very similar stage to Roch and he talked to me about his diagnosis and his experiences so far. His wife's first language was not English and I was conscious of the fact that she wasn't taking part in the conversation, although she was listening. So I turned to her and asked her how she was feeling. "Sad," she said, without hesitation. "Me too." I replied. We looked at each other. We didn't need to say anything else. Later, as we were leaving and our husbands were exchanging comments on their respective rollators, (each clearly hating the things, but having to make the best of it) she and I hugged each other. "Good luck." I said. "You too," she replied. I left feeling supported and understood, having exchanged seven words with a stranger. It was my best meeting yet.

Let's hear it for the carers or 'how petty' (depends on your point of view)

We are lucky with our Occupational Therapist, we like her and she works hard for us. But on her last visit, she made a remark which has stayed with me. She was contemplating the ramp outside the back door, its shortcomings, and what would need to be changed to make it work in a safer way, for wheelchair use. Her very valid point was that the gradient is too high - it comes to an end not far from the side wall and should continue on a turn, taking it well down the garden. I understand all this and if it's necessary, so be it. It was the casual way, almost as an aside that she said "Of course that plant will have to go." I had thought we could have kept it, the Laurel. The first time we viewed the house I noticed it. I noticed it because the previous owner had planted it in exactly the same situation as the Laurel my father had put in at home, many years ago. Exactly the same place in our garden in Butterfield avenue, my childhood home. Seeing it there had meant something for me. Another sign that the house was right for us. Now, of course Rachel had no idea about all this - she was just doing her job and doing it well, and we are grateful. It was just the casual way in which it was said. Why would it matter? What difference would it make? Well, it matters to me. It's another thing I don't want to lose, another change I don't want to make. I am the voice of the carer here and sometimes it sucks! I think I need to say that here sometimes. I don't want to lose my Laurel tree!



Now folks, don't tell me we can plant it somewhere else or say 'it's only a Laurel tree!' Or 'Stop complaining, you're not the one with MND!' Yes, yes, I know all that. If I sound insensitive I do apologise, but let's hear it for the carers folks. Little things can make a difference and sometimes I feel a bit 'run over' by the professionals as more and more of our life gets swept aside.

An update

Well, it's been too long, but I'm back. The last couple of weeks have felt difficult. This past week saw the development of my head cold into a delightful bout of sinusitis and I was surprised by how rotten I felt. I went back to work today and I'm glad I did. I welcomed it and had a good day. It was a bit of a struggle and I certainly feel very tired now but tomorrow off and then two days on, so time to recover even more and finish the antibiotics (or 'antibiotits' as my mother misspelt it in a text to me the other day. That gave us a laugh).



Being unwell myself has worried me. At the moment, Roch is not depending on me to perform many physical tasks for him. He is becoming more dependent on me, yes, but between us, and with some help from Tom, we managed with me more or less out of the picture for several days. Takeaway city. It won't always be like that. For the first time last week, I cut his nails for him. He has been having difficulty putting on his socks most mornings, but he hasn't let me help him yet. Lifting things is a problem, carrying things - well, he just can't. Going upstairs is a huge effort and he doesn't do it often, but he can still do it. He sometimes escapes upstairs without telling me and when I look for him, there he is in our old bedroom upstairs, defiant! It's not that I don't want him to go upstairs ever again, just that I feel quite protective and I don't want him to overdo it, or worse - fall, especially going up or down the stairs. But I get that he needs to prove to himself that he can still do it.



We've decided to do an online shop weekly, or at least, more often. Roch did it this week as I just wouldn't have been up to going out to the supermarket. This way Roch can help. I know he feels I am having to do so much more - and it's true. I don't mind doing it, but it is just more to do and all these things take up so much time and energy. He used to do a lot of shopping, he will tell you that he always put out the garbage (not always, Roch, but yes, mostly!) and the recycling. So now I have been doing the shopping and putting out the garbage (and Tom has been helping with that, and with the recycling). There is so much less that he is able to do - and I will do it willingly, but when I'm not well it's difficult. So the online shop was a great help, and with the amount of alcohol purchased, it was easy to see the hand of Roch at work (no wonder he was so keen!).



I am grateful that after almost two years after diagnosis, we are still able to manage so well - he is still able to manage so well. Yes, he walks like a 90 year old sometimes, but he's still walking - just. Yesterday he had to use his left hand to help his right when washing his teeth (but today his right hand performed the task alone). Too often his thumb disobeys his commands. It's all going in the same direction, but there's quite a way left to go.



Rachel, the Occupational Therapist, visited recently. The ramps are not right, but they'll do in a rush, as they say. She was especially displeased with the ramp outside the back door. The gradient is too steep and it is too short... However, it deals with the step problem we had. When the outdoor non-slip covering is in place, and the hand rail, she thinks it will do for the coming summer. After that, it will not be suitable in its current incarnation for wheelchair use and it will have to go. She is suggesting alternatives.



Medequip delivered the padding for the shower seat yesterday, and a bed rail, so he can help himself into and out of bed (although this hasn't been a major problem as yet). Turning in bed is beginning to be a struggle, so it may come in handy then. It helps when he is negotiating his way around on his side of the bed, too. There are so many simple ideas to help at this stage. They will be back to fix handrails between the kitchen and the tv room and along the wall between the new bedroom and the tv room. We like Rachel.



Roch gave me a wonderful compliment recently. I just hope it's not too 'previous'. He told me he felt I 'shared the darkness'. He talked about the 'ministry of presence'. These are phrases coined by Dr. Sheila Cassidy to describe the role of those who care for the terminally ill. Sharing the darkness. I am glad if I am present in a real sense and that my presence provides some comfort in a terrifying place. I hope to share the darkness as fully as I can, but I need to build up my strength and resources to do that. I am working on this. Anyway, we need to make the most of the light too and there is still plenty of that.

Some good news and some bad news...

So it's been really busy around here this last week. The good news is I was wrong about Arsenal letting Tom down. They beat Barcelona!!! Let's hope they manage to beat Stoke tonight. The other good news is that Roch and Tom have gone to the Emirates. Roch's disabled membership has come through. Good news at last.

Roch and I are sleeping downstairs now. I am gradually transforming the former sitting room. We have both slept really well every night so far. Tony helped Tom and me to move the bed last Thursday. The new curtains are up, with discreet voile panels to preserve our privacy (or as Roch would put it 'in case the neighbours see my ----!' What can I say? Opposites attract...
One or two of our favourite pictures are up and we have selected some photographs of the children for the walls. Little by little it is coming together and we are getting used to our new living arrangements. The new TV is helping to reconcile Tom to the change, but I know he misses his red sofa.

The bad news is that our last night upstairs was marred by a fall. Roch had been downstairs for something and then came back upstairs and went into the bathroom. Barefoot, he says he tripped over the big toe on his right foot and crashed to the floor. Thank God he didn't hit his head against the wash hand basin, but his head did strike the floor (wooden floor boards). He bruised his shoulder too. I heard the noise of his fall and leapt out of bed. Instinct told me to keep him where he was for a short time, until we established that he was essentially uninjured. Then it was a question of how to get him up. I certainly couldn't do it. I helped him to roll over on his front and he managed to get onto his hands and knees. He crawled to the top of the stairs, where he sat on the top step and then pulled himself up using the bannisters. Back to bed with a pack of frozen peas for the bump on his head. It was his first 'face plant'. He tells me this is what a face first fall is called in the Patientslikeme community. It may have been that the trip downstairs and back again was just too much. Perhaps we need to look again at the dreaded velcro fastening slipper option.

Our Community Matron came to visit later that day and we talked about this and many other things. She was really helpful. We talked about what to do if he falls again, and how at this point, we could use a chair so he could lever himself up from a kneeling position. I was happy when she confirmed that I had done the right things. I asked her to refer me for training for carers in first aid and lifting etc., which she has done. Even more helpful was our conversation about the stage we seem to have entered, where Roch can still walk, but risks falling. She was encouraging and felt Roch was approaching it with just the right attitude. It's about risk management, she said. You don't want to confine yourself to a wheelchair when you can still walk, but at the same time, it's foolish to take unnecessary risks. He is prepared to take the risk of falling by walking for as long as he can, using the rollator more, but using the wheelchair to minimise fatigue and for longer outings.

It is getting more and more difficult for Roch to do the things he used to do - shopping, helping round the house. He feels this keenly I know. Gradually all these tasks are falling to me and I know he worries about this. It's hard for him because he prided himself on how we were a team in this way. We are still very much a team I would say, even though physically he is less able. It is tiring and I need to learn to leave things, prioritise and delegate to Tom a bit more, establish some routine chores he would be willing to undertake (ah there's the rub!). My lovely friend Carmel spent the weekend with us and was full of advice about labour saving for me! Thank you, dear.

I just want to remind my readers that one of the reasons I write this blog is to present the situation from the viewpoint of a wife and carer. If I do not write about how Roch is feeling, it is not because I am unaware that he is going through hell and feeling it. It's just that this is written from my point of view, which is just as valid and who knows? It may strike a chord with other carers. I don't pretend to know exactly how and what Roch is feeling, although I believe we are honest with each other. Even if I can guess at how he is, it is not always my place to record it here.

How am I feeling? Sadder. I feel like the monkey is catching up. For so long we were ahead of it, but it's close behind us now. Filthy little primate. I would like to end this post on a positive note, but if I did that, it would feel false to me. Let me be honest with you. I am too tired and sad to be positive right now. So I am off to eat soup and have a bath and hope that Arsenal can pull it off for Roch and Tom tonight. It's the best I can do for now.