Saturday, 26 December 2015
Wednesday, 23 December 2015
Roch goes back to the training room
On 3rd December, Roch held court at one of the sessions on a Study Day Programme for Health Professionals at Princess Alice Hospice. He was there at the invitation of Gill Thomas, (Professional Practice/Therapies Educator). The subject of the study day was ‘Supporting People with a Diagnosis of MND’ and Roch was there to talk about MND from the viewpoint of a Person Living with MND. Many thanks to Gill who made it easy for both of us, ensuring that everything possible was done for Roch’s comfort. Rock's segment of the training day was presented by Gill as a series of questions and answers. Gill had spent time with Roch in advance to talk through his experience and on the day the questions she posed were around those areas of his life with MND which she knew would interest and at the same time instruct her course participants. The session went extremely well and Roch was in fine form - as eloquent and charming as always. I’m sure those present found it very useful. I was relieved that he didn’t run out of ‘puff’ as he says himself.
|Roch with Gill|
West London & Middlesex Branch MND Association 20th Anniversary Dinner
|With Mandy Garnett, Branch Contact - "A Force of Nature..."|
On the evening of 4th December, Roch, Kate, her boyfriend Will and I went along to the West London & Middlesex branch 20th Anniversary Dinner. Chairperson Janis Parks had asked me to give a speech on the night, just before the auction. I spoke about what the Branch has meant for us as the family of a person living with MND. I was flattered and amazed at how well my speech was received and I can certainly record here that the entire night was a resounding success. I was too nervous to eat much, so I can’t really comment on the food (except - Mick Stone did you work out what the flavour of the green sorbet was in the end?) but the company was great, so was the music - and the decorations were very festive. Best of all, I believe quite a lot of money was raised.
|Will, Kate, Me, Roch and Janis Parks (Branch Chairperson)|
|"And another thing..."|
So many people came up to me after my speech and told me that what I had said resonated with them - usually their comments were prefaced by “My husband/wife/partner/brother/sister/uncle…died twenty years ago of MND - or ten years ago - or six years or two years ago” - so many people affected, having gone through what we are going through now. It’s a disease that leaves its mark, even after many years. It creates a feeling of fellowship and understanding, yes - but I notice that amongst carers and relatives, even many years after their loved ones death - the healing must continue, because the scars it leaves are deep. In my speech I mentioned, for the benefit of those present who may not have been aware, that MND comes in different forms and that each person with MND experiences symptoms differently - this is one of the reasons I think, that it is so difficult to find a cure. But although patients’ experiences differ, I believe that the family caregivers’ experience is similar. We all have to watch as our loved one is physically devastated by this cruel disease. Our family is lucky as the progress of MND in Roch has been slow. In its most common form we know it proceeds with a stunning rapidity, which, for family, must be overwhelming to witness.
I talked about my experience of the first Open Meeting we attended (pretty overwhelming) and contrasted it with the latest, which took place on the Sunday before the dinner (amazing). Both were Christmas gatherings. The dinner and the most recent Christmas Open meeting reinforced for me the feeling of being part of another, bigger family. Like family should, the members of this family welcome us, value us and wish us well and I know they will do whatever is in their power, to make living with MND easier, more bearable - not just for Roch, but for me and the kids too. That evening was one hell of a ‘high’ for me.
I cannot end this ‘Highs’ and ‘Lows' blogpost without mentioning one other High - at the Christmas Open meeting we met Branch Patron Jeremy Vine. The usual welcome treats were present, including Santa, a massage for me and plenty of delicious cake but the highlight of the evening for me was meeting Jeremy, who brought his talk to a close by wishing Roch a Happy Birthday and introducing the Birthday cake!
|Happy Birthday Roch!|
Saturday, 19 December 2015
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!)