Patientslikeme

Well, it's been a while...lots of things going on here. At the moment we have two guys replacing some of the windows - so lots of noise etc. Oscar is demented - and risks certain death as he noses around outside, large pieces of wood just missing him (bam!) as they crash to the ground outside. What's that they say? Curiosity killed...I think he may have decided that discretion is the greater part of valour and the back garden is safer.

I have just joined Roch in registering on a world wide site called Patientstlikeme. We have joined an online community of patients with MND and their caregivers. It's a bit like Facebook but the patients can compare their monkey symptoms, chart their progress (or should I say decline), list their medications and if and how these are helping. Other members can comment. It's really interesting - but there's a kind of morbid curiosity in comparisons - how long has he had it, did it start with the same symptoms as Roch, how far gone is he now? So many people and with a huge variety of the monkey. Roch showed me one comment posted by a caregiver, whose husband died yesterday. He had not wanted any artificial interventions to help him stay alive. It was pneumonia at the end.



We also had news of another death. We met Glynis in February, when she and Roch, among others, gave evidence at the House of Commons. (The Joint Party House of Commons Committee on a National Strategy for Palliative Care). Glynis gave evidence in her role as her husband's carer. Graham had MND. Glynis got in touch to let us know that he had passed away last Friday. We got on really well with Glynis, who impressed us with her bravery, her openness and her rather black sense of humour...and our thoughts are with her now.



This is turning out to be a long one - mostly because I haven't been blogging lately. In other news...I really must tell you that my wonderful friend Cecilia came to visit last week and gave me one of her full body massages. It just helped so much. It's not just massage. It's being the focus of attention for a whole hour, it's about the importance of the human touch - it's about feeling cared for. It's a wonderful thing. Roch, you should re-consider...



Recent developments: we are test driving a Citroen Berlingo (already dubbed 'the Bejingo' in this house - you have to watch 'Scrubs' to get that one) tomorrow. This will be a 'motability' car and is basically a brand new car which is leased to Roch and I will be a named driver. The car is paid for with part of his DLA money each week, and insurance and maintenance is covered. We get the car for three years, and at the end of that time, we replace it with a new car. It's much easier for Roch to get in and out of it and the boot is large enough to hold a wheelchair (or the dreaded rollator). It'll be quite handy for our long-legged Tom, too. Watching him as he folds and unfolds himself in and out of the Corsa, like some human praying mantis - well, it's getting ridiculous. We'll keep the Corsa tho' and will have joined those legions of two car households. Now we have to go about organising the disabled space in front of the house. Watcher! No parking in our disabled space or else! Actually, I don't think you can police this kind of thing...

'Love each other or perish'.

All I will say about today is it's been difficult. It's all feeling difficult. We had a good day on Sunday - his sister Laura and her husband Dan spent some time with us and we had a lovely meal together at home. I hope it wasn't too overwhelming for Laura. Roch does want to talk about everything and it can feel a lot for people. Roch gave them 3 copies of a book called 'Tuesdays with Morrie', to pass round the family. It is an extraordinary book but it's pretty tough going. Morrie was a 78 year old US university professor who died of MND. This is the story of the final months of his life, as written by a former student who spent 12 Tuesdays with him before he died. It's not as depressing as you might think, although it's sad, of course. Morrie's philosophy can be summed up in a line he quotes from W.H. Auden, 'Love each other or perish' and it made me want to renew my passing acquaintance with the poet. It's strange because recently in conversation with my counsellor we agreed that all you can do is fill every day with love, so there it is, me and Morrie, we seem to have had the same idea. He said he was lucky, because he had been given an opportunity to say Goodbye, to his family, to his friends, to life. The author's life changed because of his friendship with Morrie. I wonder what Roch's family will make of it. You probably haven't heard the last of Morrie here...

Roll on, the Rollator!

Well, that last post was pretty heavy. It depresses me to read over it, so I won't! I remind myself that this is a record of how things are going, day by day, and it wouldn't be an honest record if I simply skipped the tough bits and it wouldn't give you a true picture of life with the monkey now, would it?



Thank Goodness for some Spring weather. Yesterday, it was a glorious day and we went out for lunch. Roch wanted to go back to a little Italian restaurant in Twickenham, where we went first on 16th June last. Is that date significant, you may ask yourself? Well, yes because that was the DAY OF THE DIAGNOSIS. I remember we sat there, stunned, eyes filling now and then and looked at each other over the food in a kind of disbelief. I suppose we were in a state of shock...but the omelettes were delicious and we've been back since. A kind of patina of sadness surrounds our lunch experiences there but we keep going back. I look at our fellow diners and in a funny way I can't help feeling somehow more privileged than them (strange but true). We know that time is limited and I think that gives the edge to every experience, even omelettes for lunch.



I hadn't accompanied Roch and the Rollator yet, although he has used it a couple of times, walking down to the High Street with our neighbour, Christian. Anyway, in the afternoon I suggested that we bring it out for a spin. I felt a little nervous about it - I mean it does scream disability, really and the last thing you want is to draw attention to the situation in public. No-one wants to look or feel different and I think it does make him feel vulnerable. I think he was worried that I'd be embarrassed. But I wasn't, not at all. I do find myself feeling a bit defensive. But in general people don't seem that interested. You get some curious glances but hey it has to be done. Anything that makes it easier for him, that means he can walk farther for longer, well, if he's up for it, then I am too. It was noticeable how much faster he can walk - with the stick, he's much slower. In all honesty, it was quite fun (well, for me, anyway). Beautiful day, gorgeous sunshine, all those magnificent Magnolia trees in bloom along the way. As far as I'm concerned the professionals are right. Anything that helps us to enjoy life together, for as long as possible, is a Good Thing. Roll on, the Rollator is what I say.

Fear

Roch has pointed out that I'm not saying much about my feelings on my blog. It's a fair point. After all, that was one of the ideas behind it. Well, I'll give it a try today. I didn't sleep well last night and I think it was because of Fear. I kept waking up and when I was asleep, I dreamt. I can only remember one dream, but I remember it in some detail. I suppose you would call it a nightmare. I am at home (in a house like my childhood home). I am not alone, there is some kind of celebration and family and friends are there. I remember the face of one particular friend and she is all dressed up for the occasion. It feels like a wedding and might even be my wedding. I feel beautiful and beloved. But in a '28 days later' twist, I become aware of a threat coming from outside. Suddenly it is of the utmost importance that the house is made secure and I go to the front of the house, filled with dread, my hands shaking as I attempt to shut and lock the door. My panic rises as I see a group of people at the gate, staring at me. They begin to advance up the driveway. They don't look infected yet I know they bring death and destruction with them. I am consumed with fear. But the door will not lock. As they come closer I start to plead with them. I lie to them, telling them that I have small children and begging them to leave us alone. The door refuses to lock and still they advance.





At this point, my dream ended. When I woke up I was filled with dread and I couldn't stop thinking about being without Roch. About how our life together will be destroyed, how I will have to face life without him. I lay there in fear. We have been together now since the summer of 1987 and married since August 1990. There are some things we don't agree on, there are times when we drive each other crazy but our partnership is equal and what on earth will I do without him? And how will it be when he relies completely on me and I can't ask Roch anymore? 'In the dark watches of the night', I know I felt only a faint shadow of the loneliness ahead.



In the morning I got up, got ready and went to work, because what else can I do? Just carry on as normal. I told my line manager that I was feeling a bit fragile (my eyes started to fill at this point), she was sympathetic, and then I got on with the work. It felt like a relief and I welcomed it, but I was knackered so I left early and came home to bed for a while.



Kate is cooking Roch's signature dish 'Spaghetti Carb O'Mahera' now (under close supervision I might add) and right now I'm looking forward to eating it.

4-1 and 6-3 on aggregate

Well, good-bye Champions League. Thank you Messi. Need I say more? Kick a man when he's down.

Well, we've still got the Premiership...

Easter

Good Friday



Greetings from Dublin. I'm writing this in Maura's lovely sitting room, using her laptop. We are here for the Easter weekend and excuse me if I'm somewhat incoherent but we were up at the unearthly hour of 5am this morning to catch an early flight. For only the second time i requested special assistance for Roch - the first time was for our journey to and from Tenerife in February. This time the kids were with us and there was a very awkward moment at the special assistance desk as he was clearly undecided about whether he wanted us to wait with him and then accompany him to the gate or meet him there. I couldn't read him. We went on to the gate without him and he told me later he felt that was the right thing for him. He said he didn't want the children to see him in a wheelchair for the first time at the airport. Not sure why. By the way, mental note to myself, Aer Lingus changed his seat and put him in a seat at the front of the plane but we were 25 rows behind him. Mustn't let that happen again.

Easter Monday

Well, Good Friday seems a long time ago now and here I am back in London reading what I wrote then. It was a good weekend although Roch picked up a filthy cold. Remind me never to book such early flights again. It was torture getting up this morning although the journey itself was very smooth indeed. It's sunny out now and the house is quiet as the rest of the family are asleep. The children did see him in a wheelchair today for the first time. It felt strange to me and I know to the children too. Is there such a thing as wheelchair etiquette? The woman who pushed the wheelchair made sure they were alongside us all the way to baggage reclaim so in the end we just carried on as if it was the most normal thing in the world for us to walk along beside his wheelchair. And that was the first step in making it the most normal thing in the world.

Earlier in our journey, at the Gate, another hairy moment when a member of the ground staff called for all those needing Special Assistance to come forward. So he did and when he did, she told him to stand aside as he would be boarded last! There was nowhere for him to sit near the desk so he walked slowly back to us feeling pretty embarrassed. So when I got to the top of the q, well, Roch said he could see me 'having a go' but I wasn't really - 'Can you explain to me,' were my opening words and she did try to, but it seemed daft to me. So I just asked her to explain it to him, as he was pretty angry about being called forward and then sent back, as if he was trying to skip the q. She then obligingly began an apology to the startled gentleman standing next to me. I corrected her and the children and I went on to board. Happily this time I had discussed the seating arrangements at check in and we all sat together at the front of the plane. Very handy for the toilet.





It's hard for his family when they see the changes in him at first hand. This time the cold weather seemed to make the tremor in his hands worse at times and I think it affects his walking too (a big thanks to Lorc for Roch's new walking stick!). It's hard for him being home I think. He wonders what changes will affect his next visit. I wonder that too. I worry a bit about the practicalities of it. The journey will get more difficult - but not impossible. It always feels a bit sad to me, going home. It's like stepping into the past for me - I think I get how that feeling may be multiplied for him. I think about my childhood and the way things used to be at home, or my young adulthood and what exciting times lay before me - visits with the children when they were small and my mother was more vigorous. That was our first visit home together since his mother's funeral and we all feel her absence.





But all that said, it was a good weekend and although it was a bit of a flying visit, it was worth it. We spent time with his family and mine and with some of our dearest friends. I enjoyed Saturday night with his family and it was great to see him with the clan, having a few drinks and a good laugh (and a tasty snack). That's the secret, enjoy the moment, live in the present and try not to worry too much about how the future will unfold.

Anna, Susannah and Cesc Fabregas

Yesterday more aids to living with the monkey arrived. 'Ability Net' brought his laptop with Kid Trac trackball and Dragon software (voice activated). Through their Remote training, they will teach him how to use this and he will be able to work from home when the time comes, but also use it for lots of other things. It's amazing stuff - his laptop will recognize his voice and the software is so advanced, we're told that as his voice gets more tired throughout the day, it can be programmed to recognize his 'morning' voice and his 'evening' voice. All this - laptop, software, training, is provided by 'Ability Net' and paid for by the MND Association. It's all on loan and will go back sometime in the future, when it's no longer required. That will be my responsibility.





We really are very lucky. We have such wonderful support. Today Anna (physio) and Susannah (OT) came to visit. Susannah was anxious to inspect the aids she had arranged to be installed by Medequip last week and Anna had come to talk to Roch about using the rollator and generally for a catch-up on how he's doing with exercises etc. They are young, very professional, very dedicated and (if I may be allowed to say so) also very attractive. I'm sure that's a bit of a bonus for Roch! I think they like him a lot. They manage to have a good laugh with him. Roch can usually find something to joke about. But they are very sensitive young women, who listen intently to what he has to say, who never lose eye contact when he is finding it difficult to talk about aspects of his illness which he finds distressing and who never fail to leave us feeling somehow vaguely cheered by our contact with them. They can still come up with solutions to most of the physical difficulties he is experiencing at present and take an obvious pleasure in the success of their suggestions. Completely professional and utterly charming. Unfortunately both are moving on within the next few months. I hope their replacements will live up to the standards they set.



We had a good evening yesterday. First leg of the Champions League Quarter Finals. The whole family glued to the TV, with our good friend and neighbour Christian. The Arsenal v Barca! How we groaned through the first half hour. Our spirits rose at half time when miraculously the score was nil all, only to be dashed by Ibrahimovic 23 seconds into the second half. 2-0 down we were close to despair and the family sat in tense silence. But our celebrations were second only to those of Walcott himself when he scored in the 69th minute (Christian said he wished he had had a camera to record the sight). After Fabregas' penalty goal Kate and I winced in sympathy as he limped gamely round the pitch! We held our breath until the whistle blew. We were exhausted but what a great night!