"The Times They are a-Changin'..."

"The line it is drawn

The curse it is cast

The slow one now

Will later be fast

As the present now

Will later be past

Your old road is

Rapidly fadin'.

And the first one now

Will later be last

For the times they are a changin'."

Bob Dylan

"The times they are a-changin". That's what the song says and it's a line I  find repeating in my head.

No more attempts to walk in the hoist. The plate, which for so long lay in wait underneath the bed has been dusted off and attached at last and now he is wheeled around in state. The walking is over. It's dispiriting for him. It's a big change. I'm finding the adjustment difficult myself. Like feeding him. That's a big adjustment too.

Telephone conversations for him are increasingly stressful. I find it frustrating on his behalf. People don't understand how it is for him.  So I have decided to set out some handy guidelines. Before I start, please don't be offended. You weren't to know, but having read this, you will:

1. He needs to pause for breath. Don't rush to fill the silence. He may not have finished expressing his thought.

2. Please, please don't interrupt him or talk over him. He will just give up. You will never hear what he wanted to say and he will never get to say it.

3. It's tiring for him. If its not too much trouble for you, plan a little. Don't fill the conversation with meaningless small talk. He doesn't have the time or the energy. What do you want to say to him? Say it. If it happens to be meaningless small talk - fine - but don't start with it if you really called to say something important. You won't get to that. 

4. Group calls can work, but only if one person speaks at a time and please don't all talk together or shout to him from the background. It's confusing and tiring for him and it makes him feel worse. It's different now. It's all different now. You've got to adjust to the changes too. 

Christmas

Christmas morning pancakes with Tom.

We did our best with Christmas, a valiant attempt to produce something more than the ghost of Christmas past. Oh we put a brave face on it and there were some fun moments.  But this year I fought constantly against a rising tide of sadness. The ghost of Christmas future rises to haunt me, all the more sinister for his nebulous form.

Roch sits in his riser/recliner in the midst of our lovely Christmas decorations, twinkling lights and sparkly baubles, the centre of our family celebrations.Christmas dinner (his favourite meal) was fed to him for the first time this year. The children are marvellous and feed their father with grace  and good humour. How can it not affect them? There have been some tears shed this Christmas as the shadows lengthen but always my magnificent, brave, beautiful children shoulder their burden again and like the good little pilgrims they are, continue their journey alongside us. 

We did wrap his presents although he cannot unwrap them without extreme difficulty. But he wanted to try to unwrap them himself. He tore feebly at each gift and with some assistance managed to open each one. It tired him out.

Kate and I made it to Christmas Day Mass and I was pleased. I haven't been to Mass in a while.  For the second year, Tom chose to stay with his Dad and we returned to find Roch showered, dressed and ready for the day.I couldn't help thinking of years gone by when we would both be busy in the kitchen preparing the food and toasting each other with the traditional sweet sherry, served in the Waterford crystal sherry glasses which were Wedding presents. The sherry was absent this year as I was hit with a migraine on Christmas Eve and my head was more than delicate on Christmas Day. But there were toasts aplenty.

Christmas Rose 'A Christmas Carol'.

The sun shone on my Christmas rose which bloomed beautifully for me, we were all four of us together and able to share our Christmas feast and the pile of presents on our Christmas table could not but gladden the heart! As Jo March famously remarked "Christmas won't be Christmas without any presents!"

Christmas wouldn't be Christmas without any presents...

Buck's Fizz!

Family S-Elfie!

St. Stephen's Day (Boxing Day to our UK cousins) brought its own excitement. Brentford played Ipswich Town at home and thus presented us with an unmissable opportunity to meet the great Mick McCarthy,  Tom's hero since the 2002 World Cup, when as The Republic of Ireland manager, he brought the lads to the last 16.I wrote to the club in October and they made contact with me last month. Yes, Mick would be delighted to meet Tom and Roch if at all possible, on the day of the match. The secret was kept until match day dawned.Well, Ipswich made short work of Brentford but I didn't begrudge them their win. The teams were on the pitch, the match about to begin, when the familiar tall  figure emerged from the tunnel. He walked along the side of the pitch by the disabled supporters' section, searching the crowd...I stood up and waved and over he came. A perfect gentleman, he greeted us with handshakes all round and I swear it made Tom's Christmas.Now there's a memory to cherish and I guess every MND family carer out there will relate to that, because we are the memory makers -  wives, partners, mothers, sons and daughters. Making what's left of it a life worth living and storing up a treasure trove of memories to glow for us in the dark days ahead. Thanks to Mick McCarthy and to Val at Ipswich Town FC, who did her best to make sure it happened.