In New York

In New York

Thursday, 5 May 2011

A visit from Donna

Voting today for UK Parliamentary elections. It's the first time Roch won't be taking on the role of Presiding Officer. It's a loss for Hammersmith & Fulham and it's another loss for Roch. He is sad about that.

This morning our Hospice Nurse, Donna, came to see us. We both look forward to her visits. She's such a positive, cheerful person and very down to earth. We have a good laugh together. We can talk to Donna about just about anything.

Donna's visits are a great way for me to check in with Roch, without having to make my own enquiries! It may surprise you to know that Roch and I don't talk about MND all the time, we're not constantly asking each other the 'How do you feel?' Question. We're pretty good at communicating, but I don't expect to know or understand how he is all the time. So Donna asks the questions and I listen with interest to his answers. Today much of what he said was expected. On the plus side, he's still eating and drinking with no problems, still working full time (two days at home) and still driving. On the down side, the strength in his arms is diminishing and his walking is a lot worse. He uses a stick in the house and he can just about make it to the car but he uses the dreaded rollator more now and for longer outings the wheelchair. I learned today that he is expecting the next fall at any time and he's afraid of this happening.

We told her about our exit from Exeter on Monday, which was a bit hairy because we couldn't find parking anywhere and Roch needed to pee. In the end we parked outside a railway station and a very obliging station guard let us use the lift down to Platform 2 to use the toilet situated there. What a palaver. Donna expressed some surprise that it had been a problem and advised the purchase of a Lenor bottle, which she told us, she had been reliably informed was just the right size! Problem solved.

Today was a surprise when Roch talked about his worries for me. I've talked before about how we used to share a lot of the household chores - you never would have caught him with a hoover but his ironing was way ahead of mine. He often prepared the evening meal if I was working and he was home first. It doesn't happen much any more, it's so tiring for him and it's getting more difficult for him to prepare food. Although having said that, he did manage to cook his signature dish 'Carbomahera' the other day. Sooo nice!

I do most things now and today I learned that Roch worries about this and told Donna that he thought I felt 'trapped'. I was surprised because he hadn't said this to me, but sometimes it's easier to say these things to someone else, even when the person you're talking about is there too. I thought about it - do I feel trapped? No. I don't feel trapped in my life at the moment, because although it has changed and it is constantly changing, I still feel we are partners, living through this together ('in sickness and in health' to coin a phrase). It's like we're ranged together against a common enemy. But I can still make time for myself and pursue my own interests. I still get to go to work, so although yes I do feel more tired a lot of the time and there are certain limitations on my time, I'm not feeling trapped or burdened - not yet. On reflection, this surprises me. Surely I should be feeling burdened? Yes I wish it hadn't happened to us, yes I could have imagined a much better future for myself and yes, sometimes I do feel overwhelmed when there are so many things to do. It can be a problem for me when my priorities and Roch's priorities are different and I know he's relying on me to do stuff for him he can no longer do himself. A clash of agendas! But trapped? Where else would I be? Where else would I want to be? This is my family.

In the past there may have been times when I have felt trapped but not now. Maybe it's also because my counsellor and I work hard together to devise coping strategies, to assist with survival and strengthen inner resources.

I am aware of the fact that this may change. I don't know how I'll be as Roch becomes more dependent. But there's no point in imagining how trapped I may feel sometime in the future. I'm just happy not to feel trapped yet.

1 comment:

  1. Jude & I are a bit further down the rocky road than your good self & Roch. Like you, I observe with avidity contact between Jude & specialist/ support people. As you say, it's when you really find out what is happening. The problem with Jude is compounded by her having lost the power of speech. An ipad with the Proloquo app downloaded helps in that department. Your current post strikes a lot of resonant chords for me.

    Keep it up. You are doing a great job not only caring for your man, but also spreading support for the rest of us that are care givers for this insidious disease.