The month of October – part 2

Calendar entries highlighted in yellow

8th October – Fixed! / Toileting woes

Tim from Liftech called early this afternoon to fix the glitch with the stairlift. It turned out to be a problem with the way the swivel seat microswitch was set up. He’s also reprogrammed the upstairs and downstairs wall controls that can be used to summon the stairlift. They stopped working when the stairlift track was extended which forced them to replace the electronics card because of the increased amount of teeth on the rack and pinion. So now I have a reliable stairlift that my carers can operate to bring me down stairs. The only thing outstanding is the ‘hands-free’ control mechanism which they are currently working on.

As my legs continue to weaken answering a call of nature is becoming quite stressful. Although I already have a raised toilet seat which I haven’t had that long I am already finding it difficult to stand up after sitting on it. The latest idea is to supply me with a Mowbray toilet seat and frame. This is basically a tubular metal frame with telescopic legs that is placed directly over the toilet. Sitting on top of that is a plastic toilet seat. Because it is height adjustable it can be raised up further than a simple clip on seat. Unfortunately it has not proved that successful for somebody like me with upper limb paralysis as the design of the frame and seat is too restricting on my arms and legs. This came to light this evening and resulted in a rather embarrassing moment for me as I was forced to call for help from my carer. This disease destroys all your dignity!

9th October – Planning submission under way

I had a guy from the planning department call on me this morning to take some photos of the side of the house where the proposed extension will be built. So far so good as it was only about a week ago that the planning application was submitted. Let’s hope the rest of the process is as quick.

11th October – I give up with some people!

My care agency were struggling to find anyone to do my care this evening as all my main carers were either off sick, on holiday, or out-of-town. And for various reasons all my backups were also unavailable or out-of-town. Things became so desperate that the out of hours on call woman had to come out and do my care herself! Later that evening and shortly before she left I took special care in describing how to operate the power doors in the living room and hall way as for some reason people still continuously get confused in which switch does what despite the fact that there are only three. I also stressed the importance of making sure that the front door was shut before leaving. So what happens? I’m upstairs at my desk as she walked out of the house. Immediately I notice something is wrong as usually I hear the sound of the lock on the front door engaging except this time everything is quiet. I immediately call the out of hours number hoping to catch her before she leaves but there is no response. After a couple of failed attempts I phone my next-door neighbour (who fortunately has just arrived home) to ask him if he can check my front door as I am unable to come downstairs on my own anymore. A couple of minutes later he notifies me that both the front door and hallway door are wide open! So thanks to my neighbour the house is secured again. After another hour or so I finally get through to the woman on the out of hours service who called earlier. When I ask her if she checked to make sure that the door was locked before leaving my house she admits that she was in a rush to get away. So basically she failed to comprehend which switch to operate and simply walked out of the house without looking back. I am completely stunned at the stupidity of this person. I am terminally ill, progressively paralysed and trapped upstairs unless helped. I depend on these people not just for my care but also when they leave to ensure that I am safe and secure. To walk away from such a person’s house without having the commonsense to make sure that the house was secure is bordering on criminal negligence. I could have been burgled or attacked in the night or one of the neighbouring cats could have found its way into my house as they like to do given the chance. Until my recent accident when I was still able to walk upstairs by myself at night I used to do a final security and safety check just to make sure that everything in the kitchen was switched off, that all the lights were off, and that the front door was shut. Now I am dependent on others to do this for me and as soon as somebody new comes to my house it all goes wrong. Needless to say I shall be having a quiet little word with the care agency tomorrow.

12th October – An afternoon at Birdworld

Fresh air at last! After three weeks of being confined to the house I’ve finally been able to get a change of scenery, the first since my accident, thanks to Kim who kindly donated her time. But the days of just grabbing a jacket, putting my shoes on, and jumping in the car are gone. Getting ready to go out is becoming a bit of an adventure in its own right. The wheelchair, sponge seat and detachable foot rests have to be packed away in the boot of the car. I then need help getting shoes, jacket and glasses on. We need to make sure that I have my blue badge, drinking straws and radar key (for disabled toilets) with me. I then need to be helped into the car, buckled in and my arms positioned for comfort. At the moment I am at least able to walk out of the house into the car but there will come a time when I will need to transfer from a wheelchair to the seat of the car and that is going to be interesting. The only part that caused me apprehension today was stepping out of the house because of the high platform outside the front door that was erected last year to make it easier for me to reach the lock. Nowadays stepping off the platform onto the driveway plays havoc with my balance and as this was the first time I had need to do it since my accident I was even more worried that my legs might collapse beneath me. Fortunately Kim, being the good carer that she is did everything she could to help steady me as I gingerly stepped off the platform. Silly isn’t it? Even a year ago I could not have imagined that stepping outside my own front door would be so traumatic.

We spent the day at Birdworld which is within about half an hour of where I live. We were very fortunate with the weather. The sun was shining and it was a beautiful clear blue sky although it was a little chilly in the shade so I was glad that I had my jacket with me. Being a weekday and out of season the place was pretty empty so we often found ourselves walking (or in my case being pushed) along pathways with no one in sight. From a disabled visitors point of view there are plenty of level pathways so it is easy to push someone around in a wheelchair. However there were a number of doors to attractions that needed to be pulled open which is difficult to do when you’re also trying to handle a wheelchair.

As the name would suggest there were birds, big and small, from all over the world. I’m hardly an expert in remembering the names of all the birds, but the more familiar ones such as flamingos, ostriches, kookaburras, vultures, parrots and my favourite, the snowy owl, stick in my mind. In addition to walking around 26 acres of aviaries and landscaped garden there is also an underwater world, basically a building housing a multitude of tropical and freshwater aquariums depicting ecosystems from around the world. And for the children there is the Jenny Wren farm where chickens, turkeys, goats, sheep, rabbits etc can be seen.

Halfway through the afternoon we stopped for lunch in their restaurant where we were the only visitors. Kim and I enjoyed delicious hot jacket potatoes with lashings of hot butter and a mountain of grated cheese. Yummy!

It had been an enjoyable way to spend an afternoon and I would like to thank Kim for sparing the time and for taking such good care of me.

Just a few photos this time unfortunately. We’ll try harder next time!

The birds at Birdworld!

At Birdworld

Mister Snowy Owl just didn't want to look our way!

13th October – I could have done with this yesterday / Planning application

Roger, the technician with social services called round this morning and set about building a ramp outside the front door. Originally the ramp was to be part of the house extension project but disease progression i.e. weakening of my legs and an unpredictable balancing system, necessitated a more rapid response so my OT made arrangements for it to be built using their own resources. It’s fully wheelchair ready so has a fairly gentle slope which of course means that it extends out from the door quite a long way. The surface is covered in the same nonslip material as was the platform and on one side there is a full length guard rail. In fact the whole thing looks a bit like a wooden bridge. Kim has suggested that we hang flower baskets along its length but I’ve got a much better idea, hehe. I was thinking we could paint the driveway beneath it and to either side a nice shade of blue, then I could get Remap to fashion some plastic dorsal fins which could be liberally sprinkled around the imitation moat. A nice little sign with the words ‘beware of the sharks’ would add the finishing touch and provide the ultimate double glazing salesman deterrent smile_regular. All joking aside I’m pleased with the outcome as it will make it a lot less traumatic to walk out my front door. There is also a ramp on the other side of the door in my hallway so that when the time comes it will be possible to leave or enter the house by wheelchair. The only downside is that my double width drive can now only hold one car.

I received a planning application notice this morning which needs to be displayed outside the house for about 21 days notifying the general public of my intention to build a single-storey side extension to my house. Kim has attached it to the tree at the end of my front garden. Fingers crossed I don’t get any objections. I’ve also been given a reference number which enables me to visit the council’s planning application register website and view the status of my application. A quick check reveals that it is at stage two of six ‘consultation’.

15th October – A visit from Lara

I had a visit this morning from the folks at St Michael’s Hospice. It was my regular checkup visit to see how everything was going. We talked about my slight loss of appetite, which is particularly noticeable in the mornings but can also manifest itself in the evenings. Lara is going to arrange for a dietician to come and see me although she feels from what I have described that I am already eating quite well. She’s suggested that I might like to try some Ensure drinks which are nutritional drinks high in calories for people who cannot take in all the calories they need from food alone each day.


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