Carer/Caregiver's Comparisons

It’s easy to hop in the car and pop to the shop because you need some milk. You may be waiting for a train and along it comes. You open the door and step up into it then close the door, go and find a seat and sit down.

There’s a film on at the cinema you fancy seeing so you telephone your friend/relative/boyfriend/girlfriend to see if they’re up for it. You get the train to the cinema and walk up two flights of stairs to get to the auditorium then fumble your way to find a seat in the dark trying not to disturb others.

Afterwards, the two of you fancy a meal and find there is a cosy little restaurant just opposite the cinema on the other side of the road.

You edge sideways through the tables because the table at the back looks the most secluded. The waiter then pulls your chair out for you and you sit down pulling your chair towards the table to get comfy and look at the menu. You need to use the toilet and it is situated by the entrance where you came in, so you edge your way through the tables again and you are thankful you are not obese, because the toilet is so small, you just wouldn’t fit in there if you were.

After your meal, you fancy a smoke, so up you get again, edging through the tables again, leave the restaurant through the door you came in. Oops! Mind the steps! You nearly forgot they were there. Just saw them in time. Phew! Now you can light up and enjoy your cigarette. Easy peasy!

Now I will relay the same scenarios from a carer’s point of view. As you know, Pete is in a wheelchair and I am his wife and main carer. These were the circumstances when I was struggling to manage his disability on my own with hardly any help and long before we got our adapted van.

Pete wants to come with me to get some milk. He fancies a ride out. I try to reason with him that it will be quicker to pop out without him but he insists. After all, he’s no trouble.

To get Pete out of the house to the car would mean pulling him backwards to get to the front door. I open the front door as wide as I can before I start. Before we get to the front door, we have to exit the lounge. In order to do this, I have to manoeuvre the wheelchair round with an immediate ninety degree turn (pulling him backwards) because the front door is diagonal to the lounge door. We have a small hallway where the turn can be made, with about three feet of room to do this manoeuvre so I have to pick the wheelchair up at the back and spin it around. But his footplates are catching on the lounge door as there just isn’t enough room to complete the turn so his footplates have to scrape it and the bottom of the lounge door has become furrowed.

There is a small step at the threshold and another step approximately two feet in width (not wide enough for the wheelchair to sit on) with a six inch drop. So we are now going to exit the house onto the drive. We are now in the position of pulling him straight backwards over the threshold and down the six-inch drop. First I lift the back of the wheelchair over the small threshold of about two inches. So now the back wheels are seated on the two-foot wide step and the front wheels are still in the house. Now I have to pull him again down the six-inch drop and get the front wheels over the two-inch threshold at the same time. I tilt the wheelchair back taking all the weight and pulling backwards at the same time. As the back wheels drop the six inches, the footplates crash onto the two-foot wide step. But we are now on the drive!

In order to get Pete into the car, he had a sliding (transfer) board which had been made for him. I would take off the footplates from the wheelchair, remove the side, and would put one end of the sliding board under the right-hand side of his bottom and the other end on the car seat and lift both his legs into the car. He would then grab the dashboard and heave himself along the sliding board until his bottom was on the car seat and he was fully in. I then removed the sliding board, folded the wheelchair and put it in the back of our estate car, together with the footplates.

The technique to get him out was reversed. I would remove the side of the wheelchair (the arm rest), put one end of the sliding board under the left-hand side of his bottom and the other end up on to the wheelchair. I would then help him to heave himself along the sliding board, remove it, take his legs out, put them on the footplates and replace the side of the wheelchair. I have had to take away the door mat that is sat on the two foot wide step because with that there, it makes three steps to get back in.

If Pete wants to catch a train here where we live, and needs the other platform, there are at least twenty steps to get up to the bridge. After you’ve crossed the bridge there are another twenty steps to descend.

FULL VIEW OF THE SAID BRIDGE

CLOSE-UP OF THE SAID STEPS

(There's a few more when you get to the top of these).

I’ll just put him on my back then shall I? Or I could tell the official in advance that Pete wants to catch a train and they could plan his way across, like be wheeled across the tracks when it is safe? I don’t think so. What if he hit something and fell out of the wheelchair? So, if Pete wants to catch the train here, he’d better forget it. To get on the train, he would have to go where they keep the cargo because his wheelchair is far too big for a normal carriage. He wouldn’t fit through the door anyway. So there you have it. Train journeys are out of the question. Oh, forget the bus…they’re even worse.

If Pete wants to travel anywhere, it’s either a specially adapted car or a taxi built to take wheelchairs (naturally, these cost an arm and a leg).

Ok then. I’ll have to drive and I’ve mentioned the rigmarole getting him into the car. Really can’t afford a taxi with everything else. We get to the cinema and park up. Now to get him out of the car. Same procedure as before but now it’s started raining. Oh come on, let’s run or we’ll be soaked! Umbrella you say? Pete can’t hold an umbrella and neither can I because I have two hands on the wheelchair pushing it – and it had to be uphill didn’t it?