In New York

In New York

Sunday, 19 May 2013

A bit of a moan and a visit from MaDonna

I’m finding it really hard to get down to any writing these days and it’s bringing me down.  I am new to twitter (@dmar_miss) and I am trying to follow fellow writers for encouragement and writing tips. It is a start I guess and there is helpful stuff out there, but the most I seem to be able to do at the moment is blog. That’s another thing, all the writers’ advice is to start your own blog, but I think they mean a writer’s blog and I think “I don’t have the time to start another blog!!” Does this one count?

Writing makes me feel better about myself and better about things in general, so what gets in the way?  I can’t blame Roch – there are times here when he is comfortable and content and I could just settle down and write, and that’s just it – I can’t settle down! But the longer I go without writing, the worse I feel about myself and then I get crabby. It won’t do. I’m conscious that my mood affects Roch. He’s pretty much captive to it. I’m sure it’s no fun when your carer is withdrawn and silent.  I guess what I need to do is set some time aside every day – the morning would be best, but recently most mornings I wake up and I just don’t want to get out of bed.  My energy levels are rock bottom. Sometimes I can’t think of anything that will entice me to start the new day. (I wonder how Roch does it?) I ask myself – am I becoming depressed? Where’s my motivation? Of course, I do get out of bed every day and get myself going, and things get done. But writing isn’t one of them. Why do I find it so difficult to get motivated? It's something I will have to work out for myself.

I try to think now about the things I’ve achieved at home this week. But as usual all I’m left with is a feeling of dissatisfaction for not making more of an effort to get back into writing. It was a bad start on Monday as I wasn’t feeling well enough to go into work. It took me out of Monday and Tuesday really and even Wednesday was a struggle.  It didn’t help that I was trying to get all the paperwork together for the new Motability car and couldn’t find my counterpart driving licence. I ended up having to apply for a new licence as it was coming up for renewal in September anyway. But I was so convinced it was SOMEWHERE that I spent days ripping the house apart to look for it. I drove Roch crazy, before finally admitting defeat.  But now, on the bright side, all the paperwork is going through and the DVLA have said Motability can check all my licence details directly with them. My replacement licence will take three weeks to come through and I really don’t want this to delay delivery of the new car.

Kate is graduating in July – she had her last exam on Friday – and we'll be off to Exeter for a few days. I’d like to have the car well ahead of Graduation Day, to get used to driving it and operating the WAV elements, too.  I just don’t think we are getting out enough. Maybe that’s why I’m feeling crabby, too.  We need to be able to get out an about together under our own steam.

At last all the paperwork for Tom’s student finance is done and I posted it off this week. That is a load off my mind, never mind his. He started the process online weeks ago but only this week we were told that he needed to send it all by post. This is because the financial information Roch and I have to send in support couldn’t be electronically connected with his online application. Well now, if we’d only known that at the beginning!!! Our household income has been reduced by more than 50% since Roch’s retirement on medical grounds so we are hoping Tom will get a Maintenance grant.  Anyway, all that felt quite stressful but it’s another thing off the list.

Writing about Kate and Tom there made me think. It’s almost four years since Roch was diagnosed. We didn’t know how fast the disease would progress.  Kate was 17 and Tom was 14. At that awful time I remember thinking, “If we can just get Tom through his A levels…if we can just get Kate through University.” So now Tom is doing his A levels in June and Kate graduates from Exeter University in two months.  And Roch is still doing well.

We had a visit from Donna on Wednesday. You may remember that Donna is Roch’s Palliative Care Nurse.  We first met Donna in September 2009 and it felt a little strange then to have contact with a Hospice Nurse but we love it when Donna visits – she has become our friend and her visits seldom fail to cheer us.  This time she had a lovely story to share.  She told us how the child of a former patient had asked her if she could take Donna’s name for her Confirmation name. Donna was touched but explained that the name had to be a Saint’s name and so she didn’t think it would be permitted. That was two years ago, and she thought no more of it, but lo and behold, the child made her Confirmation recently and contacted Donna to say that she had written to the Bishop and discussed it with her Parish Priest and all were agreed. She could take the name ‘Donna’ – as it was a derivative of ‘Madonna’.  Donna told us the story because she knows we are Catholics and thought we would appreciate the thought of her facebook photograph displayed in Church along with pictures of Saints like St. Catherine and St. Joseph, halos and all, and it did make me smile. But I know that Donna meant more to her than any saint ever could and she was determined to keep a part of Donna in her life – more than that – she wanted something of Donna to stay with her, because of the way Donna had looked after her parent and the whole family in the last days. That is what good palliative care is all about. We are so lucky to have her in our lives.


Thursday, 9 May 2013

So there's that damn monkey!

So there's that damn monkey!

Gadgets and gizmos

 So, today the riser recliner was taken away. As you know, it was no longer performing its function and Roch rarely chose to sit there. But a huge thank you to the MND Association – that chair helped out for eighteen months (see blog post Tuesday 8 November 2011) and became part of the furniture in our house (ha ha). It’s kind of sad to see it go, but it makes way for a new model, one which will hopefully be not only comfortable, but practical too.  The new model hasn’t arrived yet but I will keep you posted.

 As with all people living with MND, Roch is passing through the different stages of reduced function, more slowly than most, it must be said.  There are so many innovations, so many gadgets and gizmos to help out. Mostly, as functions fade and strength diminishes, one of the professionals will have a suggestion to help.  Inevitably, the time comes when each gadget fails to perform its original function and then we move on to another stage.*

There is a cupboard in our bedroom in which I store many useful things but lately I’ve noticed that items end up there which have outgrown their usefulness, at least for us. A bag of ‘foot ups’ and ankle straps – those were life savers and allowed Roch to continue walking by keeping his feet up and preventing his big toe from dragging on the ground or catching on the pavement as he lifted his foot. It was the foot ups that got Roch noticed when we were in Venice in July 2010. A friendly American, travelling on a vaporetto with us asked Roch why he wore them and that led to a conversation about MND and about the research the American was doing in Venice (involving saints and their dogs, which naturally included Saint Roch – coincidence or what?) and so we met Lerick and made a new friend. When we were in Venice, Roch was using two sticks – his sticks have been put away now, too, although one of them comes in very handy when the toaster sets the ultra-sensitive smoke alarm off in the kitchen. Sometime soon, I will blog about other trips after diagnosis in the days before the blog (New York October 2009 and Tenerife February 2010).

Roch went on from using sticks to using the rollator. Ah, the day the rollator arrived, I remember it well (see blog post Friday 26th March 2010 where I recorded Tom’s reaction when he saw it). Roch hated it at first, but it became his best friend. Now we all call it ‘rollie’. This morning, for the first time in ages, Roch was able to get out of bed by himself and, using old rollie, went to the bathroom and then the kitchen to make himself an espresso. A good start to the day.

In other good news, the OT reminded us that we had a handling belt somewhere and I went in search of it. Yes, it was in the famous cupboard! Yesterday Roch had lunch out with friends and the belt proved really useful when helping him to stand.  Another great innovation.

The ‘sock putter-on-er’ is also in the cupboard now. Roch continued to dress himself for as long as he could. I remember remarking to someone only last year how I would use the time he spent putting on his socks and shoes to put on my make-up (it took longer and longer for him to put the socks on but my face never looked any better).  Eventually it took him so long and he was so tired that he surrendered this task to others. But the ‘sock putter-on-er’ was another Godsend.

Sometimes I hardly notice when one stage is over and another begins. When I saw the bag of ‘foot ups’ in the cupboard I sat back on my heels to think. I couldn’t remember the last time he used them.

A new phase is beginning for us with the new car. We have our first test drive tomorrow in a WAV (wheelchair accessible vehicle) which is exciting. We are test driving the Fiat Doblo SpacePlus. I can’t wait to be able to drive off to new places together. The fly in the ointment is the new wheelchair. The other day (hot and sunny – remember what summer felt like?) Roch spent most of the day in the garden in the new chair, which was fully charged. He may have come in and out of the house a few times over the course of the day, but by tea time, the indicator on the chair was suddenly down to one light (from full) and the chair would not respond to commands. He called me outside and we were just working out how to get him in to the house when the lights flashed on and the controls responded again.  Back inside, I plugged the chair into the battery charger and the charger showed empty although the arm control pad showed full. How can we trust this chair on the streets if we can’t even trust it to take him back into the house from the garden? I say we need a brand new chair as clearly this one is a mess. But we will use it for our test drive tomorrow, because we are sick of waiting and our lease is nearly up on the old car. Frankly, I need to be able to get him out and about, further afield than the High Street.

So, if anyone wants a sock putter-on-er or some foot ups, you know who to ask.  Actually, you can probably get them from your OT, but if anyone wants ours, that’s fine too.

*Liam Dwyer has a really helpful website called  which is worth a visit. Liam has spent a lot of time and money researching suitable equipment/facilities to suit his needs as a person living with MND. On his site you will find a useful A-Z listing positive experiences not just from Liam but from his readers too. You can add to the information on his site with useful tips and ideas. 

Wednesday, 8 May 2013

The curious incident of the man in the bathroom

I have thought about whether it’s entirely fair to Fred (see below) to blog about this, and I have my doubts, but really, I find that I cannot let it go unrecorded. I mean, what is a blog for,anyway? There is a funny side to it and I can see that now. But when I heard about it first, it left me feeling stressed, angry and anxious. Bear with me in my attempt to maintain a fiction of pretence. “Names have been changed."
It all began as a certain person living with MND (let’s call him Rodney) and one of his personal assistants (let’s call him Fred) prepared for the daily shower. Fred felt the unmistakable signs of an imminent bowel movement and he alerted Rodney to the possibility that the shower might have to be postponed as he answered nature’s call. However, the urgency of the sensations appeared to fade and so he told Rodney it was safe to proceed with the shower. This was a mistake. Having settled Rodney on the shower seat in the wet room and begun the process of washing Rodney’s hair, Fred’s bowels once more called for attention. This time they could not be ignored. Rodney suggested that Fred use the upstairs toilet, for obvious reasons, and Fred concurred. Now, I have often observed that when necessity demands, many people prefer the privacy of their own bathrooms, and clearly Fred belongs to this group of the population. Earlier, he had mentioned his intention to use the toilet at home, as Fred lives only a few doors away from Rodney’s house, but Rodney had objected to this, insisting that he use the toilet upstairs and not leave the house.  Now, in the wet room, as Fred informed Rodney of his urgent request, Rodney once more told Fred expressly to go upstairs and not to go home. Fred agreed. “Ten minutes,” he promised and left the room. Moments later, Rodney, sitting naked on the shower seat in the wet room, heard the front door slam and his heart sank. Fred had locked himself out of the house. Rodney was trapped on the shower seat, wet and dripping. Now, we know that Fred has a short term memory problem, but this is ridiculous. It is a few short steps from the door of the wet room to the bottom of the stairs in Rodney’s house but in the length of time it took for Fred to traverse this space, he forgot that he was to go upstairs. After a time, Fred returned to the house and soon realised what a stupid thing he had done. They conversed through the window of the wet room. Happily, Rodney made no attempts to stand up alone. It was 8.30am on a Wednesday and he figured he only had an hour to wait until the cleaner arrived. And so it proved. As usual, on the dot of 9.30am, the cleaner arrived and let Fred back into the house. Rodney had carefully arranged a selection of shampoos and shower gels on the shower seat to preserve his modesty, just in case she was standing with Fred when he opened the door. But there was no necessity for this precaution. In Rodney's own words, "Disaster had been averted".

 Reader, if you saw it on TV, you wouldn’t believe it could happen. Short term memory loss is tragic and Fred was very contrite.  Rodney was fine, the room was warm and he came to no harm. No further incidents have been reported to date. Precautions have been taken and the matter discussed but what will happen next? Tune in next time...


Monday, 6 May 2013

Me time

It’s a beautiful sunny Bank Holiday Monday.  The good news is that Roch has gone to watch the football at Brentford – and I am so pleased for him! He hasn’t brought the new wheelchair, although it has been returned to us and they say they have fixed it. We are not entirely convinced, and felt that it was too risky to rely on it for Brentford today. He has gone in ‘old reliable’, which they have left with us for the present. The bad news is I feel pretty shit today so although I now have some precious time to myself – I have no interest in doing anything or going anywhere.   I do have to do some grocery shopping, however, so first, I drive to Tesco.

Before I leave, I make a list. I am good at lists. Half way there, I realise that I have left my list behind, but I figure I can remember most of the stuff, so I drive on, somewhat distracted by the maniac who appears to be rally driving behind me.  However, as I take my turn for Tesco, he races off somewhere else, much to my relief.  It is then, as I park the car in the Tesco car park that I realise I have left my wallet and purse behind. No worries, I think, although my heart sinks at the thought of having to drive home and back again, but back home I go. Having retrieved my list, wallet and purse, I set off once more. This more or less sets the scene for the rest of the afternoon. In Tesco I drift around the aisles in a mental fog but aided by my list (I would never have been able to make a decision without it) I finally arrive at the checkout and manage to behave like a normal person, even remembering my pin number and smiling in a friendly way at the young man who serves me. Somehow it all seems so boring and pointless.  But I’m pleased with the bunch of white roses, which I buy for the bedroom, to replace the wilting stems presently adorning the sideboard.

Home again, I tear a bottle of mineral water from its plastic packaging and drink thirstily. I need to put the perishables in the ‘fridge but as I cast an eye over the shelves I remember guiltily that a number of items are past their best and need to be chucked. Trying not to think about the wastefulness, I duly remove the bad food and replace with the fresh stuff. By now I am hot and bothered and anxious to use my free time for ‘myself’, so I hurry upstairs and select a sun top (a bit revealing but no-one will see me, at the same time I notice a stain on my trouser leg – dammit! – so I change into different trousers – why I think I have to do this, is beyond me). Flip flops replace my ‘good’ sandals. I should use this time to paint my toes, really, I think. Pink nail varnish beckons. On my way out of the bedroom I hesitate – should I put on a wash? I glance at the pile of clothes on top of my laundry basket. I suppose I should. Grabbing the clothes plus my mineral water (I am already clutching my nail varnish plus base coat) I hurry downstairs and fill the machine. Now, ME time. It’s a sun trap out there, so I spray some sun protection on (brand new from Tesco) and I’m just about to go outside to the garden when…I spot my roses. Oh no, I can’t leave them there, have to organise them. But now I’m in a hurry so I randomly start choosing stems, cutting them and sticking them in my lovely vase. I stand back and realise that although the blooms are gorgeous I have pretty much made an arse of the arrangement. This figures but I can’t be bothered to give them more attention. The roses go into the bedroom. Great, now all I have to do is sit down in the sun and do my nails. I settle myself on one of our rickety garden chairs and prepare to enjoy my ‘me’ time. Base coat on, I close my eyes and try to relax. But there’s too much going on in my head.  

We’ve had a bit of a setback of late. Over the past few months, Roch’s shoulder muscles have wasted considerably and this has led to new problems. It’s uncomfortable for him to lie on his side, especially his right side, and some mornings his right shoulder has been painful. We were advised by the physio to try some gentle exercises – lubricate the joint, so to speak. I must say I haven’t been great at remembering to do this. It’s only been when Roch has complained of the pain/discomfort that I’ve remembered, and each time, after exercise, the shoulder has improved. Last Thursday his shoulder was giving him problems and so we did some exercising.  The physio was due to visit that day and so I suggested that he mention it to her, just to make sure we were exercising it properly. It was one of my work days and when I got home, Roch told me that his shoulder was so painful, he couldn’t use it at all. She had done some work on it, although he said it hadn’t hurt at the time. Perhaps it was a coincidence and would have happened anyway, but I couldn’t help feeling cross. I was cross with myself, too. I can’t help wondering if I had been more consistent with exercising that shoulder, would it have reacted so badly when she worked on it?

 It hurt so much that he couldn’t put any weight on it, which meant he couldn’t use his rollator at all or help himself up using his right arm, so having a piss by himself, which he can sometimes manage, was out of the question  – even eating was a problem.  We adapted quickly and once more, the hoist has come into its own. Thank goodness we had had the bed moved, as I can position the hoist perfectly in the bedroom now, and lower him onto the bed/raise him up, as required. The Lenor bottle must be used at present all the time. Not having the use of his shoulder and arm has made him more dependent.  I look at him and see how physically diminished he has become. Today I find it hard to be optimistic.

Tom has helped out on a number of occasions, using the hoist and helping his father to piss into a bottle.  I wasn’t sure about asking him to do this but they have managed it between them with a mixture of humour and mutual respect. It can’t have been easy for either of them.

I guess last night didn’t help either – I am so hopeless when my sleep is disturbed, and last night Roch needed the toilet at 3.00am. It must be hard to have to wake your partner from a deep sleep to ask them for help. How rotten not to be able to just get up and go off to the bathroom yourself? With the bad shoulder, he could never attempt it, so I duly stumbled round with the hoist to bring him out but whenever I have to get up at night (and it’s not often) I find it harder to face what lies ahead.

Roch went to the doctor on Friday and she prescribed strong anti-inflammatory medication, together with tablets to protect the stomach. His shoulder is improving and today he used the rollator again. But as I sit in the sunshine, painting my toes a frivolous pink, I cannot fully relax. I just can’t do it. I feel anxious, depressed and tired. The sunshine is lovely, our garden is, as always a haven of greenery and birdsong but I know that what I really need to do is sit down at my laptop and blog. And so, sitting at our kitchen table with a cup of rooibos tea and that same bottle of mineral water, I start to type.