In New York

In New York

Saturday, 19 December 2015

Updates - Highs and Lows: Tax and Team Roch

There have been highs and lows since my last post and I will tell all in the next few blogposts, not necessarily in chronological order.

But first, thank you to everyone who contacted me with messages of support. I tweeted ‘The Taxman Cometh’ and was fortunate in that my tweet was noticed by Jim M, who offered great support and advice and signposted us to TaxAid, a Charity which helped us out of our tax hell. Caroline there advised us not to answer the door unless we knew for certain it wasn’t the Bailiffs! This was helpful although slightly embarrassing as I had to call through the door to ask who was there - thank you for that HMRC - but it was good to get practical help on this. 

Caroline worked out that HMRC had estimated an amount of PAYE Employer contributions owed by Roch based on the amount paid in respect of Jenny’s employment last year. However, Amelia is self employed and so no PAYE employer contributions were owed. The payroll company should have notified HMRC that the PAYE Schedule should be closed and they also should have filed the appropriate Notices of No Return. They had failed to do this. As you already know, their failure to act left us in an extremely stressful and anxious situation, not to mention embarrassing. Roch had sent them copies of every demand letter asking them to deal with it but they never had. In fact, they told us that they couldn’t speak to HMRC and that we would have to sort it out ourselves. When we eventually managed to speak to someone at HMRC (not an easy task), he told us that this was ‘nonsense’ as the payroll company were clearly marked down as Roch’s agents, as they dealt with payroll on his behalf and he told us to ask them to call HMRC themselves. 
As far as we know, they have now filed the necessary notices but they have yet to confirm that they have spoken to HMRC. I feel safe enough to have taken down my notice from the inside of the front door, which reminded everyone in the household not to open the door, without politely enquiring who it was outside. The postman, the amazon delivery man, a few neighbours and a number of people who called to the door in the evening and did not answer my question - were all treated to the “Who goes there?” treatment, the latter few being denied entry as I could not be sure it was not the Bailiffs. So, sorry if that was you out there on the doorstep. You should have answered!

The search for new Carers to add to Team Roch continues…

I was very low about this last month but things seemed to be looking up in the first weeks of December when two people were recommended to us. We arranged shadowing sessions for each of them for the morning routine and Roch gamely consented to be showered and dressed in front of strangers (on separate occasions). I had to admire him for attempting small talk whilst having his morning piss in a bottle. Both women were lovely and we all got on really well, which made it particularly disheartening when neither of them accepted the position. I know they had their reasons but I must admit to a day of darkness when I realised neither was coming on board. All my optimism evaporated and my mood crashed. It was one of those days when tears were never far away and the knot in my stomach got tighter and even more tangled than usual. 

Whenever I feel that my life is spiralling out of control - that’s when I need to control the little things.  I wake early but cannot rest, my mind full of negative thoughts. I have to get up and I find myself constantly on the move, doing things, ticking tasks off a mental list. It’s only when I’ve tackled most of the items on the list that I feel like I’m regaining some kind of control, but by then I am worn out. I can barely eat when I feel like this so I am probably ‘weak from inanition’ to quote Jane Eyre. As you may have guessed, this was one of the low points.

(Monika, it was at this point that the Daily Energy Routine took a hit after two weeks straight without missing a session. In what felt like a bitter twist I didn't have enough energy for the daily energy routine. However, I am back on track now, hoping to be energised and have clarity of mind coming up to Christmas!)

In better news, and to record a definite high point, someone who has shadowed me twice (clearly unfazed by conversing with Roch as he pees) has agreed to come on board and help us and you will be hearing more about her in later posts when I will make an official announcement. You know who you are and we are thrilled to have you! 


  1. hi dierdre

    I was reading about your carer woes and agree that it's a very stressful aspect of the disease. Care is so complex and many carers run a mile when faced with the prospect of doing it everyday. Therefore it's important to, within reason, make the daily routines as simple as possible. You mention Roch pissing in a bottle, which is probably as unpleasant for the carer as it is for Roch. Doesn't he use convenes with a leg bag. It's far easier for everyone. Also, if the shower routine is anything like mine it's exhausting for everyone. I changed to showering twice a week several years ago and now have it just once a week and just wash strategic areas daily. So much easier. I hope you don't think I am speaking out of turn, just trying to share what I have learnt. Wishing you a very merry christmas, best wishes, steve

    1. Hi Steve, thanks for reading and commenting. It's true, we are so used to the routines we don't realise how intimidating it is for new people. You are so right about simplifying things. We will have to use the convenes - but I have heard they are unreliable and tend to leak? Roch is keen to continue trying to stand in the hoist to have a piss but we will have to look at this again. As for the shower, sometimes it's every second day, but it makes such a difference to his mood to have the shower - he hates to skip it. So exhausting now for everyone as you say. You are not out of turn, very helpful. I hope you and Tracy and the boys had a good Christmas. X