Thursday, 29 April 2010
It's kind of hard to contemplate the changes to the house. Roch is very stoic about it all. When we're discussing options and they're asking whether we want certain features to be permanent - such as ramps, or customising the kitchen, he is firm about making it as easy as possible to return the house to a kind of normality 'afterwards'. It's not easy to hear. I could see it was difficult for him.
It's going to be so disruptive and it will be difficult for the kids. But it has to be done and it has to be done soon. Watch this space for developments.
Good news re: Dragon technology and Ability Net. Someone came yesterday from Ability Net to set up and start the training for Roch. It's good. Actually, it's bloody brilliant. (Voice activated software). Heartfelt thanks to the MND Association. Interesting that the software won't recognise the word 'Roch'. It really can't get it's head round it! Many humans have the same problem...
Wednesday, 28 April 2010
We sat in the coffee shop (well, outside - it was a nice day) and I remembered being in the old coffee shop at Syon House with Roch, when Kate was a tiny baby. We had to leave because she screamed so loudly she was disturbing the other customers. My God how she screamed. Actually we had a terrible time with her (trauma at birth is my theory) for weeks after she was born. But that's all part of our history. It's what makes us a family.
Anyway I kind of went through the motions, choosing plants and making small talk but I felt disconnected, like somehow I was watching myself from a distance and observing other people from an entirely different place, a very sad place.
Monday, 26 April 2010
Two days of 10 hour shifts behind me. I was looking forward to today so much! Last night Roch picked me up after work and we went for a Chinese meal to our favourite Chinese restaurant. There I was, bleary eyed, mascara under each eye, head buzzing, looking, as I well know, like crap...but the lure of won ton soup proved too much. Also, I don't have the luxury these days of thinking, "not this time, too tired, maybe another time.." How many other times will there be? Lots, hopefully, but time is passing. It's almost a year now since the monkey entered our lives. Inch by inch it crawls forward on its dirty little paws...you know I can see it in my mind and in a fantasy very dear to me, I beat it to death with a club...
Roch is preoccupied by thoughts of retirement. It's such a conundrum. If he retires soon, will he have many years left (it's money, too) at home, trying to fill the days? Or is he 'wasting' time now, tiring himself out when he may not have many years left? He does need the social aspect of working. It's lonely being at home sometimes - and I'm not counting the company of the monkey.
I think this is very much on his mind at the moment.
We're looking forward to the arrival of the Citroen Bejingo. That will set the neighbours talking! First the windows, then the new motor. The new motor, of course, will be paid for by the DLA money, but they don't know that. Don't get me wrong, lovely neighbours.
Friday, 23 April 2010
Tom has persuaded me to join Facebook, so I'm there now (just don't write on my wall, mum) - no photo just a faceless silhouette - I am still the family saddo, having the grand total of 11 friends.
Had a conversation with someone yesterday who I must say with the best of intentions (I really don't know this person at all) was advising me about the planned works to the house but I was getting fed up listening to it. "It'll be a mess, love, everything'll be filthy, you'll need (list follows of the never ending list of jobs to be done..." then "You'll need all the light switches changing." I think, 'What?' he nods knowingly, a little sadly. "Wheelchair.." he murmurs. O for God's sake. Now I'm really narked. So I decide to put an end to it. "Well, he won't be able to move his arms, will he? So that's one job we won't need to do." That shut him up.
Next week we're having a site meeting with the architect and the occupational therapist. So that's the next step. Oh and we did that test drive. So it looks like we'll be getting our motability car - well, Roch will. Looks good. The test drive was with the Salesman (a Millwall fan - good sales pitch. Fear of a good hiding if you don't buy...) and a French student who sat with me in the back and tried his own sales pitch once or twice but due to limited English failed miserably. We were sold on it anyway which was just as well...
Planned visits: Mairt and Lorcan coming over tomorrow. Hope they won't be disappointed with the Arsenal at the Emirates (Don't mention Wigan) and - Maura arrives on Monday! Dear Maurie.
Wednesday, 21 April 2010
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...
Tuesday, 13 April 2010
Sunday, 11 April 2010
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.
Wednesday, 7 April 2010
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.
Tuesday, 6 April 2010
Friday, 2 April 2010
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.
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.
Thursday, 1 April 2010
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!