'Nobody Knows'

Recently, a friend of Roch's read my entire blog at one sitting. He told Roch that it made him feel guilty because he had had no idea things had been so tough for us. First of all, thank you so much for reading my blog - I was touched and delighted that you stuck with it to the last post and secondly -please don't feel guilty. We don't talk to our friends about how tough it is. We want people to enjoy our company! To illustrate my point, I want to share a little story with you...
There was once a woman who had had a very sad life. She herself was always keen to share her experiences with anyone who would listen. At first kindly friends and neighbours meeting this woman in the street would ask her how she was. The woman's answer always began in the same way 'Nobody knows,' she would say, 'Nobody knows how I suffer,' and she would commence a litany of complaints and moans -until the time came when people crossed the street to avoid her and she was known throughout the neighbourhood as 'Nobody knows'. That, my friends, is a true story.
The point? Well, that woman may have had a hard life and she may have felt she had a right to moan and complain, but her friends and neighbours got sick of hearing about it, and I don't blame them. Who wants doom and gloom all the time?
Roch and I don't want to be the new 'Nobody knows'. Sure, sometimes we're down and we might have a bit of a rant in private. Tears have been shed but we still know how to enjoy ourselves and have a laugh. We're not going to visit our woes on the unwary well wisher. I try to make this blog as honest as I can. So if you want to know the latest, and you want to see how we are, have a read here, I promise I'll update it more frequently (now there's a New Year Resolution for you).
Gerry, thanks for stopping by, hope to see you again sometime.

Not a whole person any more

What do you say when your husband tells you he's not a whole person anymore, not a 'normal human being', when he turns his face away from you to hide the tears? When he compares what he considers to be the few tasks he carried out today, which have left him feeling exhausted, with all the things he was able to do a year ago? When he blames himself for all the shit Kate and Tom will have to deal with, are already dealing with? When he tells you he is contemplating all his losses, the 'lost' Roch and how his physical powers are diminishing - and also the future which has been taken away from him. His counsellor often talks to him about how he will never see his grandchildren. He has told me that he feels this is intrusive. It's not something he thought about until she mentioned it. Now he sits beside me and mourns this loss. I hold his hand. This is not a time to offer false hope, make an attempt at humour or talk about how we don't know what will happen, that every case is different, that there are the possibilities of a longer life. He fears a longer life spent in decrepitude. This is not a time to speak in platitudes. I say 'I am so sorry Roch, I am so sorry', and I am, I am deeply sorrowful. I listen, and stroke his hand and feel helpless. I do tell him that he is not to blame for the shit that we all will have to deal with, that Kate and Tom are stronger than he thinks, that he cannot take on all their stuff. That they will have other influences in their lives, other sources of support we may not be aware of now. But this doesn't help. 'I should be that influence,' he says. 'It should be me supporting them, but I won't be there.' So I shut up then. Nothing I say can help him.

He worries that he won't be able to protect his brothers and sisters from his reality when they visit at the weekend. Why should you protect them? I ask, why shouldn't they know how it is for you? He nods. We agree however that we do fear interference. Some may deal with their sadness and feelings of helplessness by making obvious suggestions, by trying to interfere. It would be easy for me to feel insulted and I know I can be defensive and I will have to watch myself. By Friday of course, Roch may be feeling better. The very fact of the Family Visit may cheer him.

After a time, he withdraws his hand and asks for a tissue. He's not surprised when I produce one, he remarks that in twenty years of marriage he thinks there has only been one occasion when he has asked for a tissue and I haven't been able to oblige. He tries to stand but it's a struggle. His legs are very weak now. The stairs are terribly difficult for him. The transition to a downstairs bedroom is not far away. We plan the actual move for after Christmas. I'm wondering now if we should be organising this sooner. We are minimising the trips upstairs. The wet room should be finished today and in fact, Roch is already using it almost exclusively. I can add the finishing touches over the next few days.

In a year, a lot has changed. It's hard to focus on the positive sometimes, to be grateful for what we still have. I just don't think about the future if I can help it.

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.