Like Pádraig who managed a new PB today. I want to be upbeat. I want to be positive. I want to look at the bright side of life. I want to be energetic and forward looking. At times I am. At times I ain’t. Tonight I ain’t. Because I wonder about a good coping mechanism that would allow me to cope with the most unbearable things happening not just from time to time. But almost every day.


Take today. Carers are not allowed to do what I would consider to be the most basic things in terms of care for Pádraig. We are not told but find out by default. We have been ordering the most basic items for Pádraig’s day-to-day care. They are not being delivered. I write to the HSE and care coordinators. A fistful of messages is immediately returned to me saying they will not be in the office for the next few days. Some just say they are not in the office. And the standing bed? No word.

This is beyond being funny. This is beyond being slow or disorganised. In my mind, this is negligence. There is endless time for an endless number of endless meetings. There seems to be no time to get the basics right.

Any health programme will tell you that you have to get up and move to stay healthy. You don’t have to be a doctor or a researcher to know that this is right. So what does it mean for someone who is recovering not to be moved, not to be standing up for months? The doctors, the nurses, the therapists, the managers, the people at those meetings should try that for themselves. Not for a few months, just for an hour. Lay down in bed and don’t move. And then imagine, just imagine, what it means to be lying down for months.

Can not providing desperately needed equipment and care products be justified by saying ‘that’s the system’? Or “you know the way it is?”