It's official! I'm a Carer.

So today I attended a workshop run by the Richmond Carer's Association. It was about back care and moving and handling people. I've been wanting to attend something like this since Roch fell the last time - some months ago now. It was useful and informative and also interesting in unexpected ways. Since coming home I have practised one technique on my patient (not absolutely necessary yet) - a safe way of helping him to stand from a sitting position. A dismal failure. He's better off struggling up himself! I'll get back to you when I've worked out what's going wrong. Hope I do better with the rest of it - it isn't exactly inspiring the patient's confidence!
We were an interesting group, and one of the most useful things for me was meeting the other attendees (all women) who are also carers. I was the only person there looking after someone with motor neurone disease.
There was a woman who cares for an adult daughter with cerebral palsy. There was so much to cover that we didn't get a break but she remarked that it was all a break for her. Just being there.
Another participant had to leave early to go back to her husband in hospital. She was a very bright, chatty person who broke down when she was introducing herself at the beginning of the day as she told us she could no longer hug her husband because he was in so much pain. He has bone cancer and is on 'end of life' medication. I hope she felt the sympathy and support that was present for her. When she left our warmest wishes and cries of 'Good luck' followed her out of the room.
A third woman cares for her older partner, whose condition was one that was new to me and so I cannot record it here, but he, like Roch, is beginning to need assistance with standing and falls at least once a week. There have been ambulances and emergency rooms involved, she told us.
We were joined by a Staff Nurse who works at a local Daily Respite Centre for older people. Their youngest client is 64 and their eldest is 102. One volunteer is 92 and she helps clients to the bathroom and assists in other ways.
We were all very focused and anxious to learn and there was a real atmosphere of mutual support.

I just thought - aren't we all great? What a wonderful bunch of people. And many thanks to Richmond Carers. I'm looking forward to the next Workshop and I know I'll be going back for support. I hope I meet some of those women again.

"Do not let your hearts be troubled."

At last, my laptop is up and running again after problems over the last few weeks so I'm back again and ready to talk about where I think we are now.

Roch has been quiet and introspective a lot lately. There's a reluctance to go out and we have talked about it. He says he's going through another transition. He is afraid to be out on his own, afraid of the unexpected, of unwanted attention. We had planned to go to our local Aids-Mobility shop to look at portable ramps and toilet seat raisers (for our trip home in July). Not, I'll be the first to admit, a particularly pleasing prospect, but necessary. Twice we have postponed, because he just hasn't been up to it. Well, I don't blame him and I know when he's ready, we'll go. It's another step along the way to dependency. On the other hand, if we don't get the appropriate equipment, it would considerably lessen his freedom to visit family and friends this summer. So...

We haven't been out together much lately, although we did go out for a meal with two of our neighbours a week or so ago. Michelle has featured in my blog before - she was the first neighbour I told about Roch's MND. You can rely on Michelle. She is a woman of action and I know I can ask for her help, any time. Lots of people say that to you, but with Michelle, I know it's true. A friend of her husband Brendan's had MND and so they know some of what's in store. They are quietly (well, sometimes not so quietly!) supportive and we can have a laugh with them, too.

Other things are changing. He is still walking, just, but the strength in his hands and arms continues to decrease. Last week we took the wheelchair and ventured to Kew Retail, where we shopped in Boots for an electric toothbrush. He has been concerned of late that he is no longer able to floss and we were pleased with our purchases. I found a long-handled flosser - floss on a stick basically, so for the moment, that problem is solved - and also a brush head for the electric toothbrush which says it's designed to deep clean between the teeth. We shall see.

That day I left him in the cafe in Marks & Spencers (gettting used to being specific about my order - "Medium latte, but can you put it in one of those cups with the large handle, and please don't fill it to the top?")
Then I ventured to the food hall, which was really busy. I met Gerry McDonagh's widow Pat and her daughter Clodagh there. It was lovely to see them again. Clodagh's first baby is due in a week. They have good days and bad days. The hospital investigation is ongoing. We all know that Gerry did not receive the right care when he was admitted the weeekend before he died. Even the Consultant has admitted as much. One staff member is under disciplinary. Pat told me that although they were married for over 3o years and she first met Gerry when she was 14 years old, the memory that stays with her now is of his suffering before he died and how he was in the final days of his illness. These are heartbreaking, sobering thoughts. Roch's story has been different up to now, the path his illness is following is different to Gerry's path. We can only hope that the end will be different too. Pat and Clodagh are doing their best to make sure it will be different. So thank you to both of you.

Roch is still washing and dressing by himself. Slower and slower but determined not to accept help. I admire him for this, but it's hard to see him struggle sometimes. After his shower, he sits on the bed awhile, gathering strength before donning the first garment. He rests between tasks.

The other night he woke himself by biting his tongue. There was some anxiety that this might be a precursor to some lack of muscle control, some spasm in his mouth, but perhaps not. It hasn't happened since.

It's hard for him to be still - Roch the fidgeter, the mover and shaker! But he is learning to be still, he says. I hope it helps that the house downstairs is such a lovely place to be and the garden is so lovely at this time of year. He sits outside with a drink or coffee and the customary cigar, i-phone in hand. Or you might find him in his comfy leather chair in font of the HD tv, with 'Judge Judy' for company.

So after all that, how am I? Well, I can tell you how I am today. Today I managed to go to Mass. (All you atheists out there - look away now!)

I try to go every week, but I don't always get there. Afterwards I felt lighter, still sad, but not hopelessly sad. At the beginning of the Mass, our Parish Priest, Fr. Willie spotted me and as he walked by, on his way to the Altar, he smiled and nodded. He knows us. He knows about Roch. The first prayer out of his mouth was for families in the Parish who have to cope with the illness of a family member. I'm sure he was thinking not only of us, but I know we were in his mind, when he asked for prayers from the community. That was a good start for me, but it got better. The response to the Psalm today was 'May your love be upon us Oh Lord, as we place all our hope in you.' The choir sang the response and something about it made my eyes fill with tears. I let my sadness surface - I didn't try to push it down as I would usually - so when the words of the Gospel were read, I felt their comfort too. "Do not let your hearts be troubled. Trust in God still and trust in Me."

A visit from Donna

Voting today for UK Parliamentary elections. It's the first time Roch won't be taking on the role of Presiding Officer. It's a loss for Hammersmith & Fulham and it's another loss for Roch. He is sad about that.





This morning our Hospice Nurse, Donna, came to see us. We both look forward to her visits. She's such a positive, cheerful person and very down to earth. We have a good laugh together. We can talk to Donna about just about anything.


Donna's visits are a great way for me to check in with Roch, without having to make my own enquiries! It may surprise you to know that Roch and I don't talk about MND all the time, we're not constantly asking each other the 'How do you feel?' Question. We're pretty good at communicating, but I don't expect to know or understand how he is all the time. So Donna asks the questions and I listen with interest to his answers. Today much of what he said was expected. On the plus side, he's still eating and drinking with no problems, still working full time (two days at home) and still driving. On the down side, the strength in his arms is diminishing and his walking is a lot worse. He uses a stick in the house and he can just about make it to the car but he uses the dreaded rollator more now and for longer outings the wheelchair. I learned today that he is expecting the next fall at any time and he's afraid of this happening.


We told her about our exit from Exeter on Monday, which was a bit hairy because we couldn't find parking anywhere and Roch needed to pee. In the end we parked outside a railway station and a very obliging station guard let us use the lift down to Platform 2 to use the toilet situated there. What a palaver. Donna expressed some surprise that it had been a problem and advised the purchase of a Lenor bottle, which she told us, she had been reliably informed was just the right size! Problem solved.





Today was a surprise when Roch talked about his worries for me. I've talked before about how we used to share a lot of the household chores - you never would have caught him with a hoover but his ironing was way ahead of mine. He often prepared the evening meal if I was working and he was home first. It doesn't happen much any more, it's so tiring for him and it's getting more difficult for him to prepare food. Although having said that, he did manage to cook his signature dish 'Carbomahera' the other day. Sooo nice!


I do most things now and today I learned that Roch worries about this and told Donna that he thought I felt 'trapped'. I was surprised because he hadn't said this to me, but sometimes it's easier to say these things to someone else, even when the person you're talking about is there too. I thought about it - do I feel trapped? No. I don't feel trapped in my life at the moment, because although it has changed and it is constantly changing, I still feel we are partners, living through this together ('in sickness and in health' to coin a phrase). It's like we're ranged together against a common enemy. But I can still make time for myself and pursue my own interests. I still get to go to work, so although yes I do feel more tired a lot of the time and there are certain limitations on my time, I'm not feeling trapped or burdened - not yet. On reflection, this surprises me. Surely I should be feeling burdened? Yes I wish it hadn't happened to us, yes I could have imagined a much better future for myself and yes, sometimes I do feel overwhelmed when there are so many things to do. It can be a problem for me when my priorities and Roch's priorities are different and I know he's relying on me to do stuff for him he can no longer do himself. A clash of agendas! But trapped? Where else would I be? Where else would I want to be? This is my family.

In the past there may have been times when I have felt trapped but not now. Maybe it's also because my counsellor and I work hard together to devise coping strategies, to assist with survival and strengthen inner resources.

I am aware of the fact that this may change. I don't know how I'll be as Roch becomes more dependent. But there's no point in imagining how trapped I may feel sometime in the future. I'm just happy not to feel trapped yet.

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.