At last, my laptop is up and running again after problems over the last few weeks so I'm back again and ready to talk about where I think we are now.
Roch has been quiet and introspective a lot lately. There's a reluctance to go out and we have talked about it. He says he's going through another transition. He is afraid to be out on his own, afraid of the unexpected, of unwanted attention. We had planned to go to our local Aids-Mobility shop to look at portable ramps and toilet seat raisers (for our trip home in July). Not, I'll be the first to admit, a particularly pleasing prospect, but necessary. Twice we have postponed, because he just hasn't been up to it. Well, I don't blame him and I know when he's ready, we'll go. It's another step along the way to dependency. On the other hand, if we don't get the appropriate equipment, it would considerably lessen his freedom to visit family and friends this summer. So...
We haven't been out together much lately, although we did go out for a meal with two of our neighbours a week or so ago. Michelle has featured in my blog before - she was the first neighbour I told about Roch's MND. You can rely on Michelle. She is a woman of action and I know I can ask for her help, any time. Lots of people say that to you, but with Michelle, I know it's true. A friend of her husband Brendan's had MND and so they know some of what's in store. They are quietly (well, sometimes not so quietly!) supportive and we can have a laugh with them, too.
Other things are changing. He is still walking, just, but the strength in his hands and arms continues to decrease. Last week we took the wheelchair and ventured to Kew Retail, where we shopped in Boots for an electric toothbrush. He has been concerned of late that he is no longer able to floss and we were pleased with our purchases. I found a long-handled flosser - floss on a stick basically, so for the moment, that problem is solved - and also a brush head for the electric toothbrush which says it's designed to deep clean between the teeth. We shall see.
That day I left him in the cafe in Marks & Spencers (gettting used to being specific about my order - "Medium latte, but can you put it in one of those cups with the large handle, and please don't fill it to the top?")
Then I ventured to the food hall, which was really busy. I met Gerry McDonagh's widow Pat and her daughter Clodagh there. It was lovely to see them again. Clodagh's first baby is due in a week. They have good days and bad days. The hospital investigation is ongoing. We all know that Gerry did not receive the right care when he was admitted the weeekend before he died. Even the Consultant has admitted as much. One staff member is under disciplinary. Pat told me that although they were married for over 3o years and she first met Gerry when she was 14 years old, the memory that stays with her now is of his suffering before he died and how he was in the final days of his illness. These are heartbreaking, sobering thoughts. Roch's story has been different up to now, the path his illness is following is different to Gerry's path. We can only hope that the end will be different too. Pat and Clodagh are doing their best to make sure it will be different. So thank you to both of you.
Roch is still washing and dressing by himself. Slower and slower but determined not to accept help. I admire him for this, but it's hard to see him struggle sometimes. After his shower, he sits on the bed awhile, gathering strength before donning the first garment. He rests between tasks.
The other night he woke himself by biting his tongue. There was some anxiety that this might be a precursor to some lack of muscle control, some spasm in his mouth, but perhaps not. It hasn't happened since.
It's hard for him to be still - Roch the fidgeter, the mover and shaker! But he is learning to be still, he says. I hope it helps that the house downstairs is such a lovely place to be and the garden is so lovely at this time of year. He sits outside with a drink or coffee and the customary cigar, i-phone in hand. Or you might find him in his comfy leather chair in font of the HD tv, with 'Judge Judy' for company.
So after all that, how am I? Well, I can tell you how I am today. Today I managed to go to Mass. (All you atheists out there - look away now!)
I try to go every week, but I don't always get there. Afterwards I felt lighter, still sad, but not hopelessly sad. At the beginning of the Mass, our Parish Priest, Fr. Willie spotted me and as he walked by, on his way to the Altar, he smiled and nodded. He knows us. He knows about Roch. The first prayer out of his mouth was for families in the Parish who have to cope with the illness of a family member. I'm sure he was thinking not only of us, but I know we were in his mind, when he asked for prayers from the community. That was a good start for me, but it got better. The response to the Psalm today was 'May your love be upon us Oh Lord, as we place all our hope in you.' The choir sang the response and something about it made my eyes fill with tears. I let my sadness surface - I didn't try to push it down as I would usually - so when the words of the Gospel were read, I felt their comfort too. "Do not let your hearts be troubled. Trust in God still and trust in Me."