Stream of Consciousness

Extract from notebook 23/11/2010

What would happen if I ate sensibly and took some exercise? If I didn't feel tired ALL THE TIME? If I went back to Pilates once a week? If I meditated for 20 minutes every day? If I prayed (why have I stopped praying?). If I wrote 3 sentences every day? If I blogged as often as I had orginally intended? Would all that make me feel better? Would I feel less scrambled up, tinny, jangly, stretched? What would happen if I took some deep breaths? (Now, there's a thought). If I stopped.
STOP!
Stopped what?
Stopped making endless lists (they sit in my notebook as a constant reproach). Stopped ceaselessly turning thoughts over and over in my head - sofas, death, ramps, beds, measurements, paint colours - jewelled bead, frozen marrow, tint of a hint of a not quite cream but definitely not magnolia, oh for God's sake, MAKE A DECISION! Is the curtain material too much? Will the bed fit downstairs? (Just measure it!). Will Tom get into Sixth Form at St. Mark's? (Take that tone out of your voice, young man!). Will Kate EVER get rid of that cough, and keep up with the work, and be ok - so far away? OmiGod Roch can be so annoying but what will I do without him/What will it be like?/My life is closing in on me/oops nearly went to THAT PLACE but came back just in time...Will I ever get rid of the dust in the house? Will that painter ever stop talking? Oh shit I have to get up at 6 for work, must post that parcel to Kate...
STOP!
Maybe now would be a good time to take a deep breath.

Good news and good friends

When will there be good news? This is the name of a Kate Atkinson novel, and whenever my eye falls on the title in a bookshop, I have to admit, it does resonate with me. It is a question which has presented itself a number of times over recent months. So now I can tell you that there is good news - the MND Association have agreed a grant to us of £2,000 towards the works in the house! This comes from the local branch, so come July - you better be ready to sponsor me on that walk again!!!

Also today, more good news as I realise how lucky I am in my friends - how many friends good and true I have and how much support there is for me. How nice it was to call work re: sending of sick certificate and realise, to my genuine surprise and pleasure that I am missed and that there are people who would willingly come to the house armed with mops, buckets and dusters and be my 'Molly Maids' for the day! I can't pass up an offer like that.

I surprised myself today by asking my lovely neighbour Michelle to help me clear the books and dvds away in preparation for the painting. I don't know why it should feel so difficult! It is completely in my head. It's that Superwoman thing again. I try to do everything myself and then pretend to be surprised when I collapse. Now I'm really pleased I asked, she will help me and promises to bring cake!

(Note to self - learn to ask for help and accept help when offered, people may surprise you and bring cake).

Gerry McDonagh R.I.P.

So Monday we went to Gerry's funeral. Here he is back in July at the Bushy Park walk in aid of the MND Association. That's his wife Pat beside me. Gerry and Roch were diagnosed with MND (ALS) on the same day. 16th June 2009. Gerry had a far more aggressive type of ALS.

About two weeks ago, Gerry caught a chest infection and when Pat called to let us know he was in hospital, I think both Roch and I assumed it was the first of probably many chest infections, one of which would prove fatal. This is often the way it ends for a person with MND. So I was shocked when Pat called to tell us that his Life Support was going to be turned off. I was even more shocked when I heard her story of Gerry's last days in hospital. Unfortunately it is a story I have heard before and it is why the MND Association are working very hard to push for a National Strategy for End of Life Care (see previous Blog entries).

It's such a rare disease that ordinary nursing staff don't have experience in dealing with a patient like Gerry. He couldn't lie down because he couldn't breathe lying down (for us this is so obvious - why couldn't they understand?) but they kept trying to get him into bed and complained to Pat that he was 'giving them trouble'. I should explain that Gerry had lost the ability to speak. For quite some time he had been unable to communicate by speaking. Pat told me that she asked for extra pillows to prop him up. They didn't come, so she went home by taxi, got two pillows, put clean pillowcases on, went back by taxi and propped him up herself. But that's not the worst. Gerry could no longer swallow and so he had to be fed through a tube in his stomach -what they call a PEG. But no-one at the hospital was prepared to take responsibility for authorising feeding and so for 36 hours after admission, Gerry was not fed nor was he given anything to drink. Was this one of the reasons he died from the first chest infection? I don't know, but it couldn't have helped, could it?

The day Pat told me they were going to turn off his Life Support, she also said that he was attached to so many tubes and there was so much equipment round the bed that she couldn't get close enough to hold him.

I am determined to make sure Roch does not suffer like this and that Kate, Tom and I are not standing by, helpless to prevent it. So how do we do this? Already Roch is accepted at the Princess Alice Hospice. We have been assured that when an infection like this strikes, he will be brought to the Hospice, where the nursing staff are properly trained. He will not be brought to the nearest hospital. Now I need to have some more reassurance about this and we also need to think about treatments and interventions. Well, we have thought about this. Now we need all of it in writing and I need to talk to our Hospice Nurse, Donna. It is the worst nightmare scenario for people with MND and their families. I felt for Pat from the bottom of my heart and I don't want to find myself in the same position.

For Gerry, it's all over now. The limitations, the frustrations, the indignities. You often hear it said, but I know it was true of Gerry 'Died after an illness bravely borne'. R.I.P.

It's all go here...

We are slap bang in the middle of the Works to the house and it's bad timing but that couldn't be helped. This past week has seen the noisiest, messiest, dustiest part and here I am stuck at home recuperating after my surgery last Friday. However, I don't mean to complain because there's a lot to be thankful for. I've had Maura here all week and she has looked after us all and helped to clear and pack stuff away and been available to assist with decision making about tiles/colours etc. Whilst I've been laid up she's been the contact point between the guys on the job and me, when Roch's been unavailable. To do this she's been up early every day so I can rest up and she can be on hand when they arrive for work in the morning. A Pearl beyond price.

And then there's Tony. He is running the Job. I think I mentioned him before - Roch's cousin. We have absolute confidence in him and it is such a relief to leave this business in his very capable hands. He could not do more for us. I do not exaggerate. He anticipates almost every need and is usually on hand with a solution. He is trying to make sure this whole process is as stress free as possible, given the unavoidable levels of disruption entailed in having your kitchen ripped out and replaced with a shower room, a wall built to make a separate area for a bedroom downstairs, a completely new kitchen and boiler fitted...and that's just what they've doing so far. There are other jobs to follow, including making both front and back entrances wheelchair accessible and adjusting the floor levels - hallway through to wet room. I could go on.
But Tony's not just a decent person who totally knows his job. He's also very good company and it's a pleasure to spend time with him. So like I say, a lot to be thankful for.

I'm surprised and a bit disappointed that I am still feeling crap myself. Tired and weak and really not up to things. You know that feeling where you stand up and immediately feel you want to sit down again? Well, that's it. I'm told the procedure went very well, no complications - so that's a relief. Bit of a scary moment when they were explaining the possible risks beforehand. A pleasant female surgeon from Colombia reeled them off in an attractive, musical accent, ending each sentence with a question in her voice - "So - we could puncture your bladder? Maybe your bowel? Cause a haemorrhage?" She almost made it sound like she was offering a choice of medical errors. Of course I knew the risk was minimal but for a tiny instant fear had me picturing myself running barefoot across the car park, hospital gown flapping open behind me, making my escape...

All the surgical and nursing staff were very good to me and nothing got punctured, except possibly my pride (very difficult to maintain one's dignity in a hospital gown, I find) as James, an extremely cheery and obliging health professional, did up the ties at the back for me after the surgery and assisted me as I made my wobbly way to the toilet. Thank you James.

Through it all I am acutely aware of Roch, struggling up the stairs more, slowing down a lot I think but soldiering on as usual. He's pleased with the way The Works are going - more than pleased -delighted - but it's hard for him when I'm out of action. It's hard for me too. Of course I'm kind of used to feeling a bit weak and having to recover strength after migraines, but Roch has never had that. He's always been the strong one, physically. It's new for him to have to rest after finding that he's done too much. It's like giving in for him. Although he did remark yesterday that one of the good things about MND is that lovely moment when he's b*****ed, when he finally gets to lie down in bed. I was glad to hear this positive thought but may have spoilt the moment somewhat, as my honest response was 'Roch, there's nothing good about MND'. He kindly conceded that as an MND spouse, I was entitled to this view.

So, where are we now?

So, where are we now? Well, Kate is off at Exeter University and Bless her, she has fallen victim to 'Fresher's 'flu' but has settled in nicely and we are so proud of her! It's a wonderful opportunity, but it will be hard for her, and not just for the usual reasons. She knows she must expect to see changes in her Dad - there will be developments between visits and the decline will continue.
As for us, after various delays beyond our control (and some, I admit, within our control - really, none of us wants the building work to happen) we are All Systems Go for Stage 1 - the new kitchen. I find I can't get very excited about it, (for shame Deirdre, who doesn't want a brand new kitchen?) Thanks to Maura for working so hard to clear space in the shed for storage. She made herself ill (!) and of course, thanks to Chris. Well, frankly without Chris's plans we would never have got this far. Enter Tony, Roch's cousin, who is going to carry out the works. The kitchen is chosen (what a palaver) and to be delivered in the next two weeks. Stage 2 is the Wet Room and you're right, Steve, the Clos-o-mat is sooo expensive.

We have been to the quarterly meeting of the local MNDA group, a gathering which I find more helpful now than before, although it's never easy. They had a guest speaker there, a speech therapist with special experience in MND. She talked to us about communication aids and also explained how speech/swallowing is affected. I think I've mentioned that Roch feels there may be a slight deterioration - his voice may be getting softer and he is conscious of a droop at the sides of his mouth. I did ask her about this, and she says that's how it starts, as the muscles weaken. However, this is not obvious to others (Tom will tell you that Dad can still raise his voice when necessary!). Also, at the dentist the other day Roch found it difficult to breathe during the examination. He had to take breaks. Lung capacity seems less. So he'll have to have this tested and we'll see how it's changed. The walking is slow but the wheelchair has not been used since Somerset. Thank God he still drives. Only one fall - and that happened playing football in the hall of our house with Tom! Don't even get me started...he didn't hurt himself, but it was a bit of a struggle to get him to his feet again.

We went to Ikea last night and as we left, clutching our plans and quotation etc., the guy closing up stared at Roch, open-mouthed. We figured it was because Roch was using his rollator. The man's curiosity was so obvious it was comical. It could have been upsetting but we ended up having a good laugh. "He didn't say it out loud, but his eyes said, 'what the f*** is wrong with that guy?" said Roch. This would be the first question - we do know there is a second question, mercifully seldom asked but we guess in the minds of many, and recently posed by an acquaintance, so - "You should have said, "I've got bloody MND awright mate? - and yeah, we do still have sex!!" was my suggested rejoinder to the question in his eyes... So now you all know and you can stop wondering. (I realise this may be 'too much information' for some of you, just forget I ever mentioned it).

As for me - well, isn't the menopause a great thing? I don't know how much of the fatigue, headaches, low moods and cotton wool head is false menopause, real menopause or just mnd wife symptoms! Does it matter? Just two weeks and the fibroid comes out. Hopefully recovery will be swift and I will start to feel much better, as the effects of the hormone injections wear off. Then we'll find out if it's the real menopause...

Last but not least I record here the very sad death of my dear Auntie Maura. Roch and Tom managed beautifully in my absence as I raced home to Ireland for the funeral in Kilkenny. It was good to spend time with family and to have a chance to be part of a very lovely farewell to a remarkable and much loved lady. R.I.P.

Overlea

We have been here at Overlea for almost five days now and are nearing the end of our stay. How can I begin to describe this experience? Well, I can start by saying that it has been a privilege. After the death of her husband Michael, at sixty-one, from Motor Neurone Disease, in January of this year, Frankie Woods decided to open their home, Overlea, to newly diagnosed people and their families. We are the eleventh family to have stayed here this summer, with two more families to come. The Woods had planned to spend their retirement here but now Michael is buried in the wood which he planted on Overlea land. We cannot begin to express our gratitude for the generosity of spirit and openness of heart shown by Frankie in offering their beautiful house and land to families like us. We will never forget Overlea and although we have never met her, we will never forget Frankie.

It is not an overstatement to say that this place is idyllic. From the decked terrace, which runs all along one side of the house, the guests have a magnificent view of the Somerset Levels. Fields and hills, as far as the eye can see. The two fields sloping down before the house belong to Overlea, to the left, a young wood - a new bench just visible, a hint to tell us where Michael is buried. It's not far from the Badger Sett he built. Birds gather to feed in a special area made just for them, beneath a handy tree in which they can conceal themselves from watching guests. Binoculars are provided. Michael was a naturalist and had written a wildlife column for the Western Daily Express for 15 years. Frankie often illustrated his work and there are many examples of her artwork around the house. Everywhere there is evidence of intelligent good taste and an eye for beauty. The peace of this place enters your soul.

The house is adapted for use by a disabled person. In fact, there are two wheelchairs here. One is motorised. The idea is that someone living with MND can test drive it, try it on for size, if you like. Roch has tried it once or twice. Tom has sped about outside on the terrace, showing Dad how it's done. We are just about to embark on the works to adapt our house and we have picked up so many tips and ideas. The outright winner is the toilet that washes and dries you! No hands required. Gotta have one of those.

But the star of the show has to be the Hot Tub. Really, nothing for me can beat lying in the hot tub on our first night here, beneath the stars, gently massaged by the bubbling water, all of us together in peace and luxury! Now that's a memory to treasure.

Happy Anniversary to us!

It may be of interest to note here that it was our 20th Wedding Anniversary on Tuesday. We celebrated in style! Roch had booked a room in a very posh Mayfair hotel. As the room wasn't ready when he arrived, they bumped us up to a deluxe suite! What luxury. We ate out at Langans in Stratton Street and had a scrumptious meal. Our fellow diners just oozed wealth - I mean, you could smell the money folks! We had a great time pretending we were used to the highlife. Actually I could get used to it only too easily. However, the highlight of the evening for Roch came as we prepared to leave and he realised he had been sitting with his back to George Graham's table. I was severely admonished for failing to recognise such an exalted personage (the closest I got was remarking that there was a guy at the next table who reminded me of Jacques Chirac, balding and rather 'weaselly' looking - turned out to be George). Now if it had been Arsene Wenger, I think Roch would have taken him back to the hotel instead of me...Anyway, lucky for me Arsene didn't show so it was back to the hotel for a nightcap (later, minus an arm and a leg, we retired to our suite.)
Just thinking, two years ago we were planning our first trip to New York and we didn't know about the MND although we realise now it was already affecting him. A year ago, we were looking forward to taking the kids to New York and he was walking with a stick, now he walks with two sticks and we are preparing for the wheelchair. You know, that's not as bad as we were expecting. It's true, in a way it's a merciful disease, because you do have a chance to get used to the changes. Well, we are being given that chance. I do appreciate that not every case is the same and some people don't get much chance to get used to one change before the next is upon them. It's not easy, but believe it or not, it could be worse.