In New York

In New York

Friday, 18 March 2011

Let's hear it for the carers or 'how petty' (depends on your point of view)

We are lucky with our Occupational Therapist, we like her and she works hard for us. But on her last visit, she made a remark which has stayed with me. She was contemplating the ramp outside the back door, its shortcomings, and what would need to be changed to make it work in a safer way, for wheelchair use. Her very valid point was that the gradient is too high - it comes to an end not far from the side wall and should continue on a turn, taking it well down the garden. I understand all this and if it's necessary, so be it. It was the casual way, almost as an aside that she said "Of course that plant will have to go." I had thought we could have kept it, the Laurel. The first time we viewed the house I noticed it. I noticed it because the previous owner had planted it in exactly the same situation as the Laurel my father had put in at home, many years ago. Exactly the same place in our garden in Butterfield avenue, my childhood home. Seeing it there had meant something for me. Another sign that the house was right for us. Now, of course Rachel had no idea about all this - she was just doing her job and doing it well, and we are grateful. It was just the casual way in which it was said. Why would it matter? What difference would it make? Well, it matters to me. It's another thing I don't want to lose, another change I don't want to make. I am the voice of the carer here and sometimes it sucks! I think I need to say that here sometimes. I don't want to lose my Laurel tree!

Now folks, don't tell me we can plant it somewhere else or say 'it's only a Laurel tree!' Or 'Stop complaining, you're not the one with MND!' Yes, yes, I know all that. If I sound insensitive I do apologise, but let's hear it for the carers folks. Little things can make a difference and sometimes I feel a bit 'run over' by the professionals as more and more of our life gets swept aside.

Friday, 11 March 2011

An update

Well, it's been too long, but I'm back. The last couple of weeks have felt difficult. This past week saw the development of my head cold into a delightful bout of sinusitis and I was surprised by how rotten I felt. I went back to work today and I'm glad I did. I welcomed it and had a good day. It was a bit of a struggle and I certainly feel very tired now but tomorrow off and then two days on, so time to recover even more and finish the antibiotics (or 'antibiotits' as my mother misspelt it in a text to me the other day. That gave us a laugh).

Being unwell myself has worried me. At the moment, Roch is not depending on me to perform many physical tasks for him. He is becoming more dependent on me, yes, but between us, and with some help from Tom, we managed with me more or less out of the picture for several days. Takeaway city. It won't always be like that. For the first time last week, I cut his nails for him. He has been having difficulty putting on his socks most mornings, but he hasn't let me help him yet. Lifting things is a problem, carrying things - well, he just can't. Going upstairs is a huge effort and he doesn't do it often, but he can still do it. He sometimes escapes upstairs without telling me and when I look for him, there he is in our old bedroom upstairs, defiant! It's not that I don't want him to go upstairs ever again, just that I feel quite protective and I don't want him to overdo it, or worse - fall, especially going up or down the stairs. But I get that he needs to prove to himself that he can still do it.

We've decided to do an online shop weekly, or at least, more often. Roch did it this week as I just wouldn't have been up to going out to the supermarket. This way Roch can help. I know he feels I am having to do so much more - and it's true. I don't mind doing it, but it is just more to do and all these things take up so much time and energy. He used to do a lot of shopping, he will tell you that he always put out the garbage (not always, Roch, but yes, mostly!) and the recycling. So now I have been doing the shopping and putting out the garbage (and Tom has been helping with that, and with the recycling). There is so much less that he is able to do - and I will do it willingly, but when I'm not well it's difficult. So the online shop was a great help, and with the amount of alcohol purchased, it was easy to see the hand of Roch at work (no wonder he was so keen!).

I am grateful that after almost two years after diagnosis, we are still able to manage so well - he is still able to manage so well. Yes, he walks like a 90 year old sometimes, but he's still walking - just. Yesterday he had to use his left hand to help his right when washing his teeth (but today his right hand performed the task alone). Too often his thumb disobeys his commands. It's all going in the same direction, but there's quite a way left to go.

Rachel, the Occupational Therapist, visited recently. The ramps are not right, but they'll do in a rush, as they say. She was especially displeased with the ramp outside the back door. The gradient is too steep and it is too short... However, it deals with the step problem we had. When the outdoor non-slip covering is in place, and the hand rail, she thinks it will do for the coming summer. After that, it will not be suitable in its current incarnation for wheelchair use and it will have to go. She is suggesting alternatives.

Medequip delivered the padding for the shower seat yesterday, and a bed rail, so he can help himself into and out of bed (although this hasn't been a major problem as yet). Turning in bed is beginning to be a struggle, so it may come in handy then. It helps when he is negotiating his way around on his side of the bed, too. There are so many simple ideas to help at this stage. They will be back to fix handrails between the kitchen and the tv room and along the wall between the new bedroom and the tv room. We like Rachel.

Roch gave me a wonderful compliment recently. I just hope it's not too 'previous'. He told me he felt I 'shared the darkness'. He talked about the 'ministry of presence'. These are phrases coined by Dr. Sheila Cassidy to describe the role of those who care for the terminally ill. Sharing the darkness. I am glad if I am present in a real sense and that my presence provides some comfort in a terrifying place. I hope to share the darkness as fully as I can, but I need to build up my strength and resources to do that. I am working on this. Anyway, we need to make the most of the light too and there is still plenty of that.