Nick was discharged from rehab on 18^th December 2009.  We were not prepared.

None of us.

We could have allowed the system to place him in care, but that was never going to happen. Even though Nick himself at that time thought it might be for the best. He needed an enormous amount of care and even the things he could do for himself had to be set up for him. Kevin, now sadly my ex-partner, pushed him to at least come for Christmas, hoping that once home, Nick would stay where we could care for him properly. We had seen enough of the system, protecting Nick as best we could from the worst of it.

We had redecorated the house for Nick’s homecoming, wanting it to be a bright, welcoming place for him. Our initial thought was that Nick could share a room with his brother, but between the need for space and the snoring, that didn’t work.

So my partner and I moved downstairs into the family living room while Nick had our room. Not ideal in any way, as we had neither anywhere for our clothes, nor any privacy. With my partner getting up and down from the makeshift bed on the floor immediately after a knee replacement and me recovering from liver surgery, it wasn’t easy

Having spoken to the local authority, social services and everyone we could think of, we didn’t think it would be for long. . Every day the ‘bed’ had to be put away to allow space for people to move. Every night, out it came again. It was a year before we managed to acquire a sofa bed, which helped a little. But after a few weeks that two inch ‘sprung’ mattress was telling us it wasn’t happy. Nick desperately needed housing somewhere suitably adapted. He wasn’t allowed an electric wheelchair as it wouldn’t fit through the internal doors of our home, and one has to be able to use them both indoors and out to qualify. Which robbed him of so much independence.  We had been given handrails on the stairs, so with help Nick could at least manage them. Walking to and from the stairs…and anywhere else… required his 5 foot mother to take the weight of his 6 foot frame.

And they wonder why I have spinal problems.

So we were five adults in a small, three bedroomed home. We had already crammed the contents of Nick’s flat in with us, now came the wheelchairs, frames and exercise equipment. It was tight.

We had no training, no idea of what was involved in having Nick home apart from a couple of weekend visits. It may be okay to ‘wing it’ for a night or two, but long term.. well, we hadn’t a clue.

At night, Nick couldn’t sleep upstairs if the TV was on downstairs, we couldn’t sleep because he was tossing and turning above out heads. During the day, whenever Nick needed anything, which was every few minutes as his mobility was so restricted, he would bang on the floor and I would drop whatever I was doing and run upstairs. If I didn’t, not knowing if I had heard or was busy, he would bang again. The trouble was, I was running upstairs for every bang… even one’s that had nothing to do with being called. And Nick banged a lot. He dropped things, put weights down, the bedstead banged against the wall…You can imagine how frustrating and annoying that became for everyone in the house.

So we bought him a wireless doorbell, mistakenly thinking it would be less intrusive. BIG mistake.

So annoying was that doorbell that on the blissful day Nick moved into his own place 18 months later, my partner took great pleasure in hiding it there and pressing the button periodically until the batteries ran out.

They lasted quite a while….. 🙂