In New York

In New York

Wednesday, 23 February 2011

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.

Wednesday, 16 February 2011

Too many changes, too quickly

We are in the middle of the final stage of the adaptations to our house. The two ramps outside are nearing completion. I was sorry to see the last of our porch doors, removed to make room for the wheelchair platform. They were taken away yesterday but I was able to make a joke about it. How strange that as my two red squashy sofas were carried from the house today, in Step 2 of the downstairs bedroom plan (Step 1: create living space elsewhere, Step 2 create bedroom in former living room), I had to fight to control the tears. Very unexpected. All the rest of it, all the changes to the house, whilst disruptive, were improvements - the new kitchen, the fabulous wet room -new flatscreen TV with Sky package. I can't kid myself anymore. I don't want to get rid of my sofas and our new living space is not going to be half as nice as our lovely, lovely sitting room. I will do my best to creat a lovely new bedroom but I don't want to have to do it. Right now I can't summon the energy to clean the bare sitting room and sort out the mess in the bedroom upstairs in readiness for our bed to be transferred tomorrow to its new home.

I wrote the paragraph above earlier today. I did clean the room and sorted out at least some of the stuff upstairs (why do we accumulate so many things? I'm sure we don't need half of them). But first I went out and met an old friend for coffee. I'm so glad I did. Getting out helped, but the support she gave me and the warmth of her affection set me up for my afternoon's work.

Bit of a hairy moment when Tom came home. I had thought he knew the sofas were going today and that his parents would be sleeping downstairs by the weekend. But although I had mentioned it, he had clearly blocked this conversation out and I know I didn't make a big thing out of it. That was a mistake. It is a big thing and I should have made sure he understood and faced out the storm. As it was, the storm came today but with the added benefit for me of an accusation of leaving him out of the loop. "Why am I always the last to know?" "Too many changes, too quickly," he flung at me. It did cut me to the quick, because I have prided myself on looking after Tom and doing right by him. But he's right. I shied away from making absolutely certain he understood that the changes were imminent. Such a basic mistake. Actually cowardly. And yet part of me was surprised that he wasn't more aware of what was happening. I was reluctant to talk about it to him, but I have thought of little else lately - how obvious it is to me that Roch needs to be downstairs now - and how to plan the move. It does take an enormous amount of planning. I found it difficult to believe he was so surprised. I think part of his upset was because he had friends coming over this evening to watch the Arsenal-Barca match. He was embarrassed, perhaps by the bareness of the sitting room and he isn't used to our new arrangements downstairs. Underlying the changes is the reason for them all and the fact of that is distressing for him too.
After the storm had passed, I asked him how he wanted us to approach things in future - to be kept in the loop, so to speak and he said that he didn't want to know. So I can't win, really.

Looks like Arsenal might be letting him down tonight too.

Monday, 14 February 2011

Reflections at 35,000ft

Dated Thursday 10th February:

Well, here I am, safely boarded on my flight to Dublin. Paudie, one of Roch's brothers, proposed a visit to spend time with Roch and it was Roch's idea that I take the opportunity to see my mother. I haven't seen her since September, when I went to Ireland for her sister's funeral. Paudie's flight came in early this morning and Roch drove me to Heathrow thus killing two birds etc..I checked in and went straight to Arrivals to find Paudie waiting. Roch joined us, pushing the rollator, having parked the car on his own. I wondered how it was for Paudie, seeing Roch with the rollator - and for Roch as he made his way slowly across the Terminal concourse. Just as he reached us, he tripped, but managed to land in a seat nearby. For one millisecond perhaps I saw the changes as Paudie saw them. I stood up awkwardly and moved over to Roch, then sat down helplessly beside him, thereby drawing attention to the stumble but being no actual help at all!

He can manage - just, but I know I am no longer happy to leave him alone - even leaving him with Tom doesn't feel right to me. This makes Roch sad. But I am grateful to Paudie and I'm sure the three lads will enjoy their time together.

One or two people have suggested that I keep a seperate, private blog and it's true that I hold back sometimes, censor, edit - even, at times, refrain from blogging at all if what I am feeling or if what is on my mind might be too private to share here. I am aware that Roch reads the blog and so does Kate. Kate was one of those who suggested that I keep a private diary. There are aspects to our new life together which I would like to record somewhere and which, at some later date, I will share. Our experiences and the way we deal with them may prove helpful to others. And so I begin...

Monday, 7 February 2011

Cars and the Monkey or 'Every Which way but the way you want it to be'

Well, we've got the Sky guy in today. He was supposed to come between 8am-1pm but he didn't show up until 3pm. Cable everywhere as of course the new downstairs arrangements mean the main TV will be wall mounted in the central part of the house. The dish isn't too bad, but it's right outside the front door, so not exactly discreet. We'll have Sky in the new downstairs bedroom, too. Gradually things are getting organised now. We are waiting for the new sofa and a proper chair for Roch - I have to think carefully about where to arrange the new furniture so that there's plenty of room for turning in the wheelchair.

When I got home yesterday from evening Mass I had forgotten my keys - so I rang the doorbell and lo and behold (!) a man in a wheelchair rolled his way down the hall to greet me and open the door. Roch is practising. I felt so proud of him - and he felt good about himself, too. That's so Roch, once he makes up his mind to do it, he does it. So we're busy making sure everything he needs is within reach in the kitchen (he can still use the corkscrew and bottle openers himself (check) - all booze within reach (check), coffee machine (check). We have to get the priorities right.

He is having difficulty facing work in a wheelchair. Actually, Roch in a wheelchair loses none of the power of his personality and I use the word power deliberately. He has yet to realise this. He may be sitting down, but he still manages to tower over the rest of us.

He can't lift the chair in and out of the car himself and so we have to think around this. There's always 'Access to Work' - they already bring him in and back once a week. I can bring him in and pick him up some days, too. This week will be his first working at home for two days, instead of one. From now on, he will be home on Tuesdays and Thursdays. It'll give him a chance to rest a bit in between the days he makes the journey.

For the first time, he used the rollator when he was alone. He told me that he sat in the car for ten minutes beforehand, psyching himself up. He can still get it in and out of the car by himself. He really hates using it. But I think it is safer now than the sticks. Driving home, the monkey struck again. Roch's right leg played up. It wouldn't respond to commands and he's lucky he had enough control to drive (very very slowly, he said) up our road and park. Thank God he was almost home. Now this is the second time he's had a problem driving. He drove later in the day and had no problem at all. You may recall that the first time this happened was when we were coming back from Exeter, and we assumed it was muscle fatigue. Yesterday we speculated that it was the cold, as he had been sitting outside a cafe on the High Street for ages, he said. Giving each other false reassurance? Is this the first indication that driving will be the next thing the monkey takes away?

Thursday, 3 February 2011

Strolling and rolling

He's been off work for the past few days. Something is changing, he tells me. Last week, he fell twice. On both occasions, he fell backwards. The first time was at home, outside the back door, but the second time he fell backwards on his way into a pub (yes, you read that right - on his way 'into' the pub). Happily, he was with friends. His bottom, back and head hit the pavement but although he was very shaken and a bit bruised, there were no serious physical consequences. It worries me that he may fall again - he's shaky on his legs, standing still is very difficult. He fell even though he was using both sticks.

He says that since the second fall, he feels as if he is entering a transition period. Something is changing in his body and psychologically, he has to adust. He's not sure if the strength he has lost will return for a time, as it has before. That he is losing strength in his legs is certain. He is also losing confidence. He didn't go out much over the weekend. The other night in bed, he turned to me in the darkness and said 'I'm afraid to go out.'

He is battling against the wheelchair. He has a point. 'If you don't use it, you lose it,' he says. But safety is important and if he 'uses it', falls and injures himself, he might never stand up again after he recovers. So where do we go from here?

I don't want to nag him into using the wheelchair - God knows, I don't want to rush him into it. Everyone says he has to come to it himself. Yes, but he's so stubborn and let's face it, he's not always right.

So - it was a gorgeous day today and I suggested a walk down to the High Street. I need to get used to pushing the chair and there is no way around it. He will need to get used to this. So we did it. Our neighbour, Christian, came with us. There's a lot to think about when you're pushing the chair. I tried not to go too slowly or too fast. I never realised the pavements were so uneven and bumpy! You have to watch for low branches sticking out from hedges. I found it a challenge when the pavement sloped on one side or the other. I think I did okay. I was lucky - Christian was the one pushing when Roch was smoking a cigar so he got the smoke blowing back in his face!

How did Roch feel? It's losing his independence, losing his power. He says he feels diminished as a person. He knows this isn't so but he can't help feeling like this. I feel for him. But it will give us more freedom to do things together. For instance, we can go back to Kew now. He can't walk round himself anymore. He used to love Kew. Maybe it would be too sad for him to go back to Kew. I know it won't be the same, and I can't hope to understand the depth of his sense of loss, but it's not over yet. He's right, we are entering a different phase, a significant phase. I know it's different for him. But for me, it's not the worst thing I'll have to face.

I'm proud of us today.

Wednesday, 2 February 2011

Premium seats at the Odeon

We went to see 'The King's Speech' today at the Richmond Odeon. Looking at their website, the word 'Accessible' was written above the showing times. I stupidly assumed that this meant the film was showing in the accessible cinema theatre. Such a popular film, I thought, and recently released, of course it would be showing in a cinema accessible to all. There was no obvious number to check this out, just the number for ticket booking. I didn't think it through. We parked not far away, which was good. I went ahead to buy the tickets. We were there for the 2.45pm showing. Before I bought the tickets, I checked about accessibility, explaining that my husband had mobility problems and found it difficult to manage steps and was told that this showing was up four flights of stairs and there was no lift. I asked about the next showing and was told that that would be better, although it was in the cinema round the corner. Ok I said, that one's downstairs then? No, she said, it's upstairs. Well then! What about the next showing? Oh that one's downstairs but it's at 6pm.

In the end, I checked with Roch and he said he would prefer to go to the afternoon showing, now we'd parked etc. I'm sure he was doing it for me, too. He knew I had been wanting to see the film for a while. I had that familiar sinking feeling as he made his slow, painful way up the four flights of stairs. At the last step, I had to really work hard to help him to the top. He rested awhile in a seat near the door. All the time I was thinking - 'Am I helping him by giving in? Should I be insisting that he stop doing these things, pushing himself?' He was exhausted by the time we got into the cinema - standing was a problem and I couldn't find our designated seats quickly enough so I just waved him into the nearest aisle seat. Only then I noticed we were sitting in Premium seats, which we hadn't paid for! Plenty of legspace for Roch! The cinema was practically deserted and it didn't take long to convince myself that the Odeon people wouldn't mind. Actually I didn't much care whether they did or not. I felt Roch deserved the seat after all the trouble getting there.

So now I have two telephone numbers so I can check out the accessibility of different showing times, in both cinemas. So that's something. No more stairs.
By the way, brilliant film. Colin Firth should really get the Oscar.