In New York

In New York

Monday, 30 April 2012

Not feeling too chipper

Pauline, many thanks for your comment - you're so right, MND is bad enough without having to make decisions about things like the PEG. Thanks to you and Steve for your advice to Roch - greatly appreciated let me tell you.

Two of Roch's brothers visited this week - Mairt and Eoin. Both commented to me separately about how Roch was in such good form, and indeed it was true. Of course he was in good form, with two of his brothers spending all day and all evening with him. We all enjoyed their visit. The house had a lively, chatty, up-beat feel. It's not always like that. Since their departure, and Kate's departure back to Exeter, it's quiet. Roch woke up on Friday morning feeling weak and shakier than usual. His intention was to go to work, with the electric wheelchair, in the taxi - and arrangements had been made for a friend to accompany him. We got as far as getting showered, dressed and then he realised that he just couldn't do it. It didn't help that the rain was sheeting down, but I think he just felt he could not manage it anyway. Yesterday when he woke, his right leg refused to move. He rested for half an hour and then it randomly decided to cooperate again. We didn't do much yesterday. It rained hard and we stayed indoors, watching DVDs and munching on chocolate and pringles! Very enjoyable. But today there is a sadness in the air. We slept late and I have found it hard to motivate myself. We talked about the changes there have been recently and the changes to come. Neither of us is feeling positive. Roch says he doesn't feel very courageous today. You don't have to feel courageous, I told him. You are so brave all the time. It's okay to be scared. I'm scared too and I'm not facing what you are facing.

I could list all the positives, and there are some, I know that - but sometimes it just feels like a wasted exercise, because the scales are balanced so heavily against the positives. The big fat fact of MND tips the scales over every time and the more time that passes, the heavier the MND side gets. Let's try to list some positives:

1. He's not dead yet.
2. He's not in pain.
3. He can still swallow

Okay, okay so now you're saying these are not true positives, and a bit depressing in themselves. I take your point - so let's start again:

1. We have met so many wonderful people - people living with MND, their Carers, so many   wonderful health professionals.
2. We have learned so much more about each other
3  We have learned to value each other so much more
4. We have learned to live more in the moment and appreciate the beauty around us
5. We have had some terrific holiday experiences which we wouldn't have had
6. We have come to value our wonderful family, neighbours and friends so much more
7. We have discovered the hidden strengths in ourselves and in each other.
ER -
8. We have a brand new kitchen

Okay I'm running out now, because the ever-looming fact of big Fat MND crowds in on me. People you meet will tell you stories of other tragedies, sudden deaths and young mothers who die of cancer, and I'm sorry for all of them, and I know we don't have a monopoly on tragedy, but you know what? I think it's okay to rage at Fate, to feel angry and resentful, to feel scared and alone sometimes. It's a crap deal.

By the way - those other tragedies? Hearing about them doesn't help. Like I say, I'm sorry for all of those people, and their families and I'm grateful that I haven't got cancer (touch wood) and that Roch doesn't have cancer (touch wood again) but it doesn'/t make me feel any better to know other people do.

Monday, 23 April 2012

Percutaneous Endoscopic Gastrostomy - ironically, a bit of a mouthful

It seems that in the past month, there have been more changes in Roch's condition. Perhaps that's also been getting me down. I know it's been getting Roch down.

The nutritionist was here last week. We had forgotten about the appointment and Roch had been up for hours, working at his computer in the kitchen, I had gone back to bed. It was midday and I was dozing, taking advantage of a day off work to get some rest. When the doorbell went and I realised who it was, I was mortified. She probably thinks I stay in bed til midday every day now. I dashed into the shower and joined them as soon as I decently could, wet hair and all.
Roch has lost weight recently. His arms and legs are thinner. He always has a good meal in the evening but his breakfast is not good. Lunch can be a problem if I'm not around, although that's usually only one day a week. The days when I could confidently leave him to heat things up or transfer hot food from pot to bowl or microwave to table have gone. However, we are so grateful to our kind and helpful neighbour, Christian, who is happy to cook lunch for Roch and often stays to share it with him.

Roch never had much of a breakfast on work days, but once in work, he might pop out for a bacon sandwich mid morning. He can't do that now, although he sometimes sends someone out to do it for him. At home, he can peel a banana and on good days he can pour some juice for himself. But too often, breakfast is an espresso and cigar. He says he doesn't feel hungry in the mornings. Nutritionist Mary suggests milkshakes and smoothies. Now, why didn't I think of that?
She probably wasn't judging me, but I am judging myself. Still in bed at noon, and no proper breakfast for Roch. No wonder the poor man is losing weight.
Worse was to come. I had missed the part of their conversation where Mary suggested that Roch start to think about having the PEG fitted. I was shocked. There's nothing wrong with his swallowing. Surely it's too early for this?

For those of you who don't know, a PEG (percutaneous endoscopic gastrostomy) is a small feeding tube which is inserted directly into the stomach through the abdominal wall. In MND the muscles involved in chewing and swallowing can become slow, weak and uncoordinated. If swallowing becomes difficult, people living with MND may eat and drink less, resulting in weight loss, which in turn results in increased vulnerability to infection and further physical weakness. As I said, Roch has none of these symptoms.
Mary explained that it's best to have the procedure whilst the Patient is fit and well. It makes sense, but still it feels too soon to be thinking about this. I guess in my head, there are a number of major stages in the MND journey. Landmarks that indicate inevitable progression and decline. The PEG is one of them. I hate the very thought of it. I sat there in the kitchen with my damp hair, feeling inadequate anyway and tried to look as if I was taking it all in my stride. It was hard to tell how Roch was feeling. I had missed his reaction when she mentioned it first. Damnation!
Mary left some literature for us to read through and for me, it makes grim reading. Like the 'nippy' it belongs, for me, in some far off future,  when I will feel stronger, better equipped to deal with it, prepared for the further decline, more able to face advancement towards the inevitable than I am now. But perhaps this is all part of that preparation (I was going to say journey again, but twice felt too X-Factor).
Obviously it has to be discussed with the medical professionals also and it's just been suggested that we think about it but still, not easy to contemplate. How does Roch feel about it? Well, the good news is that alcohol can be administered through the PEG and will not only thereby enter the bloodstream and have the desired effect, but you  can actually taste it on your tongue!
The information sheet also tells us that Roch will be able to go swimming when he has a PEG, which is an added bonus as he hasn't been able to go swimming since August 2010!
Seriously folks, how does Roch feel about having a PEG? Quite simply,  he doesn't want it. While he can still eat with no problems whatsoever, we'll do our best to keep up his weight. Quite an incentive to eat your breakfast, I'd say, wouldn't you?

And quite a spur for me to make certain that he does.

Sunday, 22 April 2012

The Greensleeves incident

The brand new electric wheelchair has arrived - and just in time, too. A couple of weeks ago, Roch's niece, Aisling came to visit with her boyfriend, Dave. It was lovely to see her again and to meet Dave and Roch thoroughly enjoyed the afternoon they spent with him. When it was time for them to leave, the sky was overcast and as a downpour was clearly imminent, I offered to drive them to the station. When I got back, a strange sight met my eyes. Roch was sitting on the floor, with his back against the old green sofa and Tom was carefully removing one of his socks. I thought at first that, falling, Roch had damaged his ankle, but thank Goodness, it wasn't as bad as that. Apart from some bruises, he wasn't hurt at all. He had fallen, yes, and Tom and Kate just couldn't manage to get him up. Bare feet, they had all three decided, would allow better purchase on the laminated floor. Between us, and with the help of two kitchen chairs, we soon had Roch comfortably seated again. Everyone had kept their heads, and followed the procedure!

Naturally I requested a report and was met with three rather sheepish faces. It seems that Kate and Tom had been in rather a giddy mood. On a sudden whim, Kate had hopped onto the rollator and Tom had whisked her away merrily, down the house at speed, to the tune of 'Greensleeves'. Meanwhile, back in the kitchen, Roch decided he didn't need his rollator anyway and rose from his chair, intending to make his way round the room, using the counter and cupboard handles for support. Thus on the Greensleevers return journey, as they rounded the corner from the hall into the L-shaped kitchen/tv room, they were met with the sight of their father's feet, sticking out along the floor, the rest of his body not being visible from that angle. To be fair, I think it gave them quite a shock. But it makes an excellent story. If you don't already know, my children are seventeen and twenty, respectively! (As a matter of fact, I'm rather pleased than otherwise at their demonstration of light-heartedness. When I cast my mind back to a very early blog, I remember noting how appalled Tom was by the sight of the rollator on its arrival).

It's been some time since the last fall. Partly, I think, because he's using the rollator now and not the sticks. But the day after the Greensleeves incident, he fell again, once more in the kitchen. He says his knees just 'go from under him'. It's less like a fall, he tells me, more a 'fold and flop'. Maybe that's the Baclofen - relaxing the muscles.
I had just left for work and Tom was preparing to accompany Roch to work in the taxi. Lately, Roch has been feeling less confident about making the journey alone. I think he's especially nervous about arriving at work. He needs help to get out of the taxi and help to get from the taxi into the office. Work colleagues are good about this, but it does depend on who's in, who's free to come outside to assist and the whole business makes him understandably anxious. For such an independent personality, it must be incredibly difficult to have to rely on other people, no matter with what good grace and willingness help is given. Anyway, lately as I say, Tom has gone along, as he's been on holiday. So when Roch fell the second time, Tom was around and Kate and her boyfriend Simon were there to lend a hand. So that was two falls in as many days.
A positive outcome has been Roch's decision, that very day, to begin bringing the wheelchair to work. He's been relying on the rollator up until now and in a way, it's a relief to me that he's bringing the wheelchair now. It was a worry. At the end of that first day he was surprised that he felt less tired than usual!
He's been out a number of times in the electric wheelchair, although not alone as yet. I smile to see him whizzing along. Speed suits Roch.
The second trip out saw a bit of a setback tho'. The footrests had been set too low and there was an ominous 'crrrunch!' as he whirred his way down a steep curb to cross the road. Reversing only made matters worse, as the footrest then got mangled underneath. The rain didn't help, but we made it back, damp but undaunted, mangled footrest held high and the chair has been fixed and used again without mishap. I can see it's going to be a Godsend. And as I say, not a moment too soon.

The Carer's Assessment and its aftermath...

First things first - Helen and Judy - thank you so much for your words of encouragement. I value every comment and am so grateful that you read the monkey blog. Helen - was that really your husband in the clip?!!! Our MND community is a small one, they say - and they're right. Some day it would be nice to get together...

The Carer's Assessment

Two weeks ago I had a Carer’s Assessment. It felt very odd, being asked questions about myself and how things were affecting me. But it felt good, too. If felt good to be the centre of attention!
 As I answered the Social Worker’s questions I realised just how much our lives have changed over the past three years, over the past two years, in the last six months. I suppose what I’m trying to say is that reality really hit home. I have talked in this blog and elsewhere of being a Carer, of how our lives have changed – but to be fair, it’s been gradual enough. I have more or less blithely gone about my business, doing what needs to be done. That’s my life, the life of a Carer, it’s just the way it is. As I answered specific questions about what I do, what his capabilities are now and how they have decreased, how much time I spend each day doing various tasks etc. I began to realise just how dependant he is on me and how much more dependant he will become. The full force of being a Carer hit me.

After my interview, I saw a support worker. Now I know why they make themselves available after Carer assessments. I can’t remember when I last cried, cried properly – not just eyes filling with tears or feeling my throat constrict suddenly. But proper bawling. Yes, there I was, with a complete stranger, sobbing my heart out.  My counsellor will be proud of me. The floodgates opened at last. I cried for him, for me, for the children – I cried because I felt overwhelmed by the responsibility – because I looked at my life and thought – what was I thinking? How did I think I could do all this? Work, look after Roch, look after the house, the garden, be all things to all people. Afterwards I was exhausted. I pulled myself together with difficulty.

The day after my assessment a work colleague happened to ask how Roch was and I started to cry. That’s not so good. I got through that day, though, stayed late and did as much as I could. But over the following few days I felt distinctly ‘flaky’ – very tired, low in mood and low in energy.  I worked my first day last week (a Wednesday) – feeling ‘flaky’ but happily rising above it to successfully lead a training session for volunteers – only to wake at 5am the next morning with a migraine, which proved unhappily persistent. Next day, I felt worse! I came to the conclusion that I had picked up a virus. Maybe I had. Or maybe it’s psychosomatic. Maybe my migraines and back pain are symptoms of repressed rage (thanks Lerick and I am reading the book you sent – there is so much anger). Or perhaps my body simply told me enough is enough – you have to go to bed now, you have no choice. It was right, I had no choice. Once the pain shooting through my head receded, I slept and I rested and I slept some more.

So today, I had more energy. I tidied, cleaned and did some ironing. I stripped sheets and changed the bedding. I sallied forth to buy supplies, basics like milk and bread, eggs, garlic sausage, the Guardian and beer for Roch. I finished a story I was writing. I made a delicious, nourishing milkshake for Roch, following advice given by Roch’s nutritionist and here I am writing this blog at 12:40am. What is that telling me? That I’m crazy? Will I have another migraine tomorrow? God I hope not. But I am probably crazy - or have I climbed out of the trough, the slough of despond? It seems so. There are so many reasons to stay there – I know some of you Carers out there would be able to hand me a list, but not one of you would linger there long. I was there for a while and perhaps I will find myself there again tomorrow. There’s no doubt I will find myself there again sometime but hey – that’s what being an MND wife is all about. Pick yourself up, dust yourself off, and start all over again.

Sunday, 8 April 2012

Happy Easter Everyone!

Taking a few minutes before I enter the next stage of dinner preparations to wish everyone a Very Happy Easter. So far it's been a lovely day here. Kate, Tom and I went to Easter Sunday Mass this morning, which felt lovely and reminded me of a Greater love. I don't talk about it much, but it's good to be reminded that we do not face life alone. I could mention footprints here but it might just be too cheesy...

The Easter eggs have been produced, the daffodils are a cheerful presence on the table, the leg of lamb is cooking nicely - and we wait in anticipation of an Arsenal win over City later this afternoon.

So, back to blogging then and staying in contact with the outside world.
I have had a number of enquiries and a few complaints (!) so apologies to all and just to confirm, Roch is very much alive and as well as can be expected!
Still working (work update in separate post to come), having more difficulty raising himself from a sitting position as his arms are feeling weaker, no problems with swallowing or breathing as yet, although he does use straws now as raising a mug or glass can be problematic. His walking is really confined to around the house using the rollator, at my and Tom’s insistence, as he is very slow and unsteady now. Outside, it’s the rollator to the car, and then the wheelchair, although in work, he still uses the rollator.

We have had the toilet seat raised (and what a great job they did, too) as it was too low. The shower seat now needs to be raised too, although most days he can manage to stand up alone.

No lithium any more, of course, but he’s back on the baclofen, a low dose, to control spacicity, which he is experiencing sporadically in his arms and hands. Unfortunately, one of the side effects of baclofen is muscle weakness, which is just what you need when you’ve got MND - more muscle weakness!  He is frail physically, but he’s still strong in mind and heart and insists on doing as much as he can for himself. His bravery is astounding to me.

Last month we attended the local MND Branch meeting. I can honestly say that we enjoyed ourselves! We felt the usual reluctance to go, as it does require some considerable emotional effort but we were determined to make it, as we’ve missed the last two gatherings. We had a warm welcome back and it was good to see the familiar faces - and some new ones. The guest speaker was Dr. Brian Dickie, Head of Research at the MND Association. You could have heard a pin drop. His presentation was easy to understand and absolutely compelling. Just the right mixture of realism and cautious optimism.

Above is a link to the MND research blog page, where Dr. Dickie talks about the disappointing results of the lithium trial, for those of you who may be interested.

One new initiative for the Branch is a new carers’ support group, which is in the early planning stages at present, but will hopefully be up and running in the next few months.

We recently met up with another person living with MND and his wife. They came to the house for coffee and a chat and then we all went for a pub lunch. We had a good time and a bit of a laugh. I hope they found it helpful to spend time with us. We certainly learned from them. Both men seemed relieved and happy to find that the other could still stand, neither confined to a wheelchair just yet.

Steve’s hands have been the first things to go, and so Elaine cuts up his food and feeds him now. She performs this task with great efficiency and good humour, explaining how she has had to adapt to Steve’s preferred method of eating i.e. spearing a little bit of everything on the fork, for each mouthful when she feeds him, she herself preferring to work her way methodically through each item on her plate. She negotiates easily between mouthfuls of her lunch and lifting the food (ham, egg, chips) to her husband’s mouth. I was impressed, but then, Elaine is a very capable and practical person. Steve continued to chat between mouthfuls, unfazed and unembarrassed.

I thought it might be difficult for Roch to watch this, with one eye to the future, but I think it helped him to see how naturally and easily this couple had adapted to the change. I hope we can do as well when the time comes.

When we parted, there was what we could only describe as a hilarious moment (hilarity shared by the two persons living with MND, I hasten to add) as Elaine and I watched our two MND husbands attempt to shake hands! This simplest and friendliest of gestures has become a massive effort to achieve, and I’m afraid it was too much for me and Elaine to watch without dissolving into giggles on the High Street! Well, sometimes you just have to laugh. 

Back to Easter Day dinner preparations and an Arsenal victory!!

Friday, 6 April 2012

Alive and well, if not exactly kicking

The other day, Roch remarked that if I didn’t blog again soon, people would begin to think he was dead. I had to admit, he had a point.

So, what’s been going on?

On a recent visit to my counsellor I told her “I think I’m struggling a bit.” She leaned towards me and said eagerly, “But of course you are struggling. You wouldn’t be human if you weren’t struggling.”

It was as if she had been waiting for me to say it, my grudging acceptance of what I perceive to be failure, admitting that I am not perfect. Only my use of the qualifying words ‘a bit’ seemed puzzling to her. Her tone and the look she cast me, were gently challenging. “A bit?”

But what a relief to hear that it’s ok to struggle. And believe me, I do. Fatigue, migraine after three long days in work (recently, after two lates in a row in work), weekends feeling shattered at home. Constantly feeling stressed, head full of worries - work/home/home/work. Lists, lists and more lists. This is what I bring to her.

“Listen to your body,” she says. “Why are you afraid to listen to your body?”
“If I listen to my body it will tell me to rest,” I reply. “It will tell me to lie down, not to drive it so hard, and I’m afraid that it will tell me to take time off work.”
“What will happen?” She asks me. “What will happen if you stay at home to sleep, to repair yourself? Will they fire you?”
“No, they won’t.” So, I ask myself, what am I afraid of?
“I’ll feel bad because I’ll feel like I’ve let them down and I won’t be living up to my own expectations of myself.”
“If you don’t you will become too ill to work at all, too ill to look after Roch, too ill to be strong for Tom and Kate. So lower your expectations of yourself”

So, here is the wisdom I have come away with. I share it now with you, but will I be able to follow this wise counsel?

Loving kindness - remember? I had almost forgotten.

Learn to create time for yourself by letting things go. Some things can wait. At work, at home. It doesn’t all have to be perfect. It doesn’t all have to be done.

Create a time bank. Steal time spent otherwise on minor, unimportant tasks and take it to yourself. Write. Create. Rest. Be still. In this way, build up your strength in mind and body.

And go to bed early.

I have been feeling low, it’s true. Tired and discouraged, at home and at work. I haven’t been writing, which makes me feel crap. I haven’t been blogging, which makes me feel out of sorts with myself. When I’m low, I sink into myself. As a rule, I avoid contact with the very people who might be able to help - friends text/email/facebook me and I ignore them. I can’t bear anyone to know how bad I’m feeling or have them guess that I might not be bearing up so well. It’s counter-productive, I know - you might say that there’s an element of self flagellation there - a feeling that I don’t deserve their support, not worthy of their regard.

However, I am dragging myself out of the slump and I have taken steps. I have gone back to Pilates, I have seen a physio about back pain, I have been back to the doctor about the migraines (I am now on a preventive dose of amitryptiline 10mg at night - I’ll let you know how it works.

Now I need to see if I can train myself to let things go, listen to my body, lower my expectations of myself.

It doesn’t all have to be perfect. (I still want it to be, I just have to accept that it won’t always be).

I am emerging from my cocoon and beginning to renew contact with friends - and I have many, many dear friends.

It’s going to be difficult, but you know what? I’ll have to follow the wise counsel, because when you come down to it, it’s about survival. It’s that simple.