The Job

Roch's still working full time. I really admire him for his determination but his job is even more demanding and time-consuming than before. You see, he is so good at his job that I think it is incredibly difficult for him to contemplate any kind of delegation. He feels he does it best and that's probably true. So, so hard for him to contemplate watching other people take over tasks he knows he could do better. But there seems to be so much for him to do and it is so tiring for him and it takes so much out of him, so that when he comes home, he's knackered. He will have to pull back at some point. He just doesn't want to give in yet. The plan is to work at home on Wednesdays - I'm just hoping that doesn't mean cramming too much into the other four working days. But he shouldn't have to be thinking about this. He shouldn't have to be pulling back. None of it should be happening to him. He's in the prime of his working life. So I can see his reluctance to make concessions to the monkey.


Anyway, he knows what I think, I've played the nagging wife to perfection lately. His OT is coming to see us on Thursday so we'll see if he mentions work to her. It's a fine balance - I know to him it's like giving in, but he's so tired in the evenings he's not being fair to himself...or to us. We'd like him to have some energy in the evenings. Also, exhaustion can mean a short fuse - put that in the mix with two teenagers (one with red hair) and I think you can imagine the rest. One thing he must find refreshing is that the monkey's presence does not mean either of our teenagers treat Dad any differently during the - shall we say - sometimes heated exchanges. Roch and I, of course, never argue at all...well, that's not true, but the monkey has made a difference. We're much more 'mindful' of each other. I think he'd agree. On reflection, the reasons for that could probably bear closer scrutiny. Am I so careful with him because the monkey's on his back? Is he so careful with me because he doesn't want to upset his Carer (after all, I am a self-confessed control freak who will ultimately have complete control over his life - now there's a scary thought, for both of us). I might just raise the point with him...

A hill to climb

I've been looking through entries in my diary notebook and pretty major landmarks are recorded there, some of which I look forward to sharing later on. The very first entry is interesting. Boy, was I angry. I took the time to record some of the reactions I encountered to the news of the diagnosis. Now, let me say at this point that some people's responses were terrific and that has to go on record. But I think it's worth quoting part of what I wrote back in June. It might help someone somewhere. These are some edited highlights.


"I'm angry with people's reactions. No, wait, they can't help their reactions. So it's not that. I'm angry with how people think they can say ANYTHING to me about this. I understand that they feel they can't say things to him. They're afraid it might upset him. But don't they think what they say will affect me? ITS NOT OK FOLKS! Want some examples? A favourite way to begin is 'Do you realise...'


'Do you realise...he won't be able to swallow/speak/move?'


'Do you realise...you'll be his Carer?'


And a personal favourite - 'Do you realise...when he needs to go to the toilet - you'll have to be holding his penis?'


Doesn't it occur to them that since the Diagnosis I have read about MND, that I am finding out more and more in my own time, that I might not be ready to hear certain things yet? Listen, it's not my responsibility to look after YOUR feelings.


Also to those people who ask him if our sex life is affected - you didn't have the right to ask about it before - so what gives you the right to ask now?


Come on people, stop for a moment, remember you are talking to his wife. Don't you think she might have spent some time thinking about what this cruel, relentless, insidious disease will do to her darling, active, sociable, funny, loving, chatty husband?


Of course, the other explanation is that some people think I'm incredibly stupid and incapable of working any of this out for myself.


Yes, I know he will lose the ability to move, speak, swallow and eventually to breathe. Yes, I know I will be his Carer, and I welcome that role. Yes, and I know you all mean well and you care about him too. But listen, folks - give me a break, I'm not made of stone. Don't expect me to be the place you bring your grief. I have enough to do, to deal with my own.

Finally, to those who have kindly offered to 'say a few words' at his funeral, I have this to say,

'Thanks, but HE'S NOT DEAD YET!'"


I was pretty angry, wasn't I? I don't feel angry with those people any more and I've learned how to deal with unwanted expressions of sympathy. It was hard for people to know what to say, it still is. But as I said before, there were people who got it right for me. Here's just one example.

My friend Carmel called from New York when she heard the news. I had sent her an email to tell her about the arrival of the monkey. I remember Roch answered the call and they made small talk for a few minutes, then he passed the phone to me and brought the kids out for ice cream, because he knew I would want some time alone with her. When she knew we were alone, she simply said, 'You've a hill to climb.' My eyes filled with tears and they were partly tears of relief. It was all I needed to hear to feel understood.

Panic and apple cake

Oh it's hard to keep the sadness away when you're tired and I was really tired today (Kate please remember your keys next time you're out late!) Daily I manage to keep the full enormity of our tragedy at bay but there are times I catch a glimpse of what lies ahead, for him, for me - just out of the corner of my eye - and I hear a whisper of the grief that lies ahead. I don't let myself think about it. The sadness is always there but I can't let it overwhelm me. There will be plenty of time for grief and the day will come when I will have to face it, but -it is not this day!



So I kept the panic at bay and took comfort in the little things. We went out for lunch together and that gave me a chance to check in with him. We're honest with each other, I think - some of the things he talked about I can share here. He's worried about when he should retire, how long before he can't walk, being dependent - that damned rollator...what can I say? I listened, and touched his hand - and let him pay for lunch, as usual! Then I settled him outside the cafe with an espresso and the eternal cigar, and took refuge in the balm of retail therapy. When we got home I made an apple cake and took a housewifely pride in its success. I brought Roch into Hammersmith to meet Christy, just to have that time with him (it's so easy to talk in the car, I find) and later I finished the ironing (my sister will appreciate what an achievement that is!), listening to my new Paul Brady CD. I remind myself that we still have him, and there are many joys to come.

Its called a rollator...

Ok let's be positive. That was the intention yesterday. The good news is after a masterly email to our OT at Richmond SS (are ye a legal man yourself? that one's for R), one phone call and an email exchange, we are back on schedule with the Plans. SS have them, and their standard specs have been sent to Chris (our wonderful architect friend). Job well done. Apologies accepted, by the way.

The walking aid (or 'rollator' would you believe?) had a mixed reception. Disbelief from our Tom 'Oh no, you've got to be !!**!** joking' - now now Tom) followed by several turns about the room, sitting on the seat and propelling himself round, using his feet. 'It handles well', he remarked at last. Kate had to have a turn too. By the time Roch got home interest had faded. He stood for a moment at the entrance to the room and shook his head. 'It's not too bad.' He's thinking maybe he'll go for the wheelchair.

He's pleased with the handrails - he says they make an enormous difference. To be honest, the squashy sofa is more comfy raised up - but the toilet frame has more than a touch of the hospital about it. I had thought it - and this morning, he voiced it. The truth is no longer out there, it's in here with us and we've got to get used to it. But hey, we did agree that it makes reading the paper in the loo that much more comfortable (arm rests). He's a positive guy.

By the way, those nice guys yesterday? They were from Medequip - just for the record.

The walking aid has landed

14:20
So now some very nice chaps from Mediquip have arrived to fit some hand rails and chair raisers. Their timely arrival is due to the usual excellent efficiency of Richmond Neuro Rehab Team (special thanks to the lovely Susannah there). We now have a hand rail going up the stairs, a smaller rail on the newel post at the top of the stairs and one of the squashy sofas has been raised to make it easier for him to stand up from a sitting position. Also delivered were a rather nifty board to help him getting in and out of the bath and a frame for the toilet upstairs. These were expected - however, we weren't expecting the walking aid to be delivered today. All these things are necessary and it is such a relief that this has been arranged, hassle-free for us. However, much as my control freaky nature takes pleasure in these things being done on time and so efficiently - having mixed feelings, seeing these reminders of the monkey all around the house. I have to tell you, I don't know how Roch will feel about the walking aid. We weren't expecting it until next week...let's face it, he's only 48 and this is the kind of thing your granny would baulk at. But for him, it's keeping the wheelchair at bay and fair enough - it's up to him. Not sure what the kids will think.

Those guys were so sweet. It was raining when the second chap arrived with the walking aid and they were busy trying to wipe the wheels before bringing it into the house. People are lovely.

OK now I'm mad

I had planned to write some positive stuff today, but hey? Richmond Social Services intervened. You see, we've had some plans drawn up by an architect friend, for adapting the ground floor of the house. We really need to crack on with this. We're thinking get the works done over the summer - ok maybe it will seep into the Autumn - we can cope with that. Next step should be someone from SS taking a look at the plans, checking the measurements for wheelchair access, advising about the height of the new toilet in the wet room etc. We're not asking them to pay for it, we're not asking them to do it but guess what? Having contacted the OT, I am then told to contact the Access Team who tell me that once a 3rd Party Assessment is received from Roch's OT at Richmond Neuro Rehab, it will be sent to the local Duty Social Worker Team from the Access Team and if we're lucky it will take at least 8 weeks before someone looks at the plans.



I've always hated monkeys - hairy, scratchy creepy things (no offence to monkey lovers - it's a personal thing) so I think it's apt to refer to this disease as the monkey and hereafter will do so.

Ok lets get this monkey going

Ok so now I've started. I'm a blogger! I've decided to blog about my life, specifically since my husband was diagnosed with MND last June. For those of you who don't know, MND stands for Motor Neurone Disease. It's a progressive degenerative neurological condition (what a mouthful) and at present he is 'living with it' but we all know it'll get him in the end. He calls it 'The monkey on his back'. If anyone ever asks me 'Which living person do you most admire?' I will tell them 'My husband, Roch.' He knows this. I've told him. He is the bravest person I know.