It was my usual early morning start today with Brendan waking up a bit after 6am. It was the start of what has been a very busy day. 12 hours later and the day isn’t over yet.

Once I got Declan off to school, I started getting Brendan ready to head out for the first appointment with our new GP. Getting him ready takes about an hour. Loading him into his wheelchair, then into the van, takes about another 15 minutes. It’s not a quick task, to be sure.

In the midst of getting Brendan ready, the post came. A letter changing the appointment time to see his new Paediatrician. (Insert a rise in blood pressure) The appointment with the new dietician was scheduled for immediately after the original appointment with the Paed. Now, they were 3 hours apart. Brendan is on a 2 hours maximum restriction sitting in his wheelchair because of his recently-healed pressure sore looking very red again. Considering the 30 minute drive to the hospital, the 30 minutes back, and the time taken in the appointments, he’d be stuck in his chair – on his pressure sore – for approximately 5 to 6 hours…and that just can’t happen. So, I rang to change the dietician appointment, but had to resort to leaving a voicemail. No surprise there and no reply since.

I’ll never stop saying that sending a letter to a patient to notify them of an appointment, or a change to an appointment, is a frustrating and nonsensical way of doing business. Ring the patient, tell them what dates/times are available, and let them choose. Happy days for both parties!

Brendan and I got to the new GP clinic no bother, that is until we went down the path to the side of the building to find the door to the lift up to the clinic. The path was barely wider than Brendan’s chair. We get to the door. It opens outward. I couldn’t reach it and with the narrow, walled footpath, I couldn’t turn him around. So, I backed him up down the path, turned him around, and wheeled him backward back down the narrow path to the door. I pulled the door open, held it open with one hand while trying to pull his chair in with the other hand. Yeah, it was pretty much a disaster. Just another example of how wheelchairs are not considered. Accessible? Yes. Barely accessible? Definitely better put.

We get to the lift, go in, and the doors won’t shut because Brendan’s chair is fairly big in comparison to a lot of wheelchairs. So, I had to lift him up in his wheelchair and wedge him in at a 45 degree angle, with me stuffed in the far corner of the lift. Finally, the doors closed and up we went.

Shall I mention that *barely accessible* issue again?

The GP was running late and without me saying too much, the appointment was rushed toward the end. I didn’t get to tell him some of things I was really hoping I could. I left feeling like he was glad to see me go. Now, I’m not saying that’s how he felt. I’m saying that is how I felt in the rush for him to see the next patient.

After the appointment, Brendan and I took a quick stroll along the boardwalk. Wouldn’t you know, he ended up with a dirty nappy. It wasn’t pretty. In fact, when we got home, I ended up having to remove the seat and back of his wheelchair to remove the covers so to wash them. Then I had to scrub down his wheelchair on one side. Yeah, you get the idea of what happened. As they say, sh*t happens…and trust me…it did!

I also received confirmation today that I will not be able to get a Rebuilding Ireland home loan because I am a full time carer, and being a carer 24/7 is not “employment” in the eyes of the government. The struggles that full time family carers face as they are relegated to social welfare is soul destroying. 

With only a few months left to get a safe, suitably-modified bungalow for Brendan before his spinal fusion, this is truly a crisis situation.

Declan goes off tomorrow evening on his first camping trip with Scouts. That’s me tonight – finishing up the packing of gear and double checking the long list of items he’s to bring. Homework, dinner, and here I am, sitting down for a few minutes before carrying on with the bedtime routine for both boys, washing up, wheelchair re-assembly, laundry and finishing off the camping gear packing.

…and the day isn’t over yet.