Tag Archives: care

From The Sublime to the Ridiculous

From the Sublime to the Ridiculous

This blog post is brought to you courtesy of 2 iPads, an iPhone and 2 add-on keyboards.

Well, where do I start? Possibly with my so called support worker blaspheming about the 2nd keyboard I’ve dug out of my bag this morning. Yes, that’s right folks I have 2 of them! My trusty iPad 2 3G state of the art about 4.5 years ago, recently joined by the iPad Mini, (mostly because it has Siri, Apple’s voice recognition software that is built into the iPad’s operating system) aimed to reduce my reliance on fellow human beings. This is all very well in theory, until you find yourself in a technological void and the batteries have gone in the 1st of your ‘qwerty’ keyboards. Such is my life. Parts of each appliance works, but no singular tool will complete a task for me.

This situation prompted several memories of similar technological faux pas. Some months ago I attended the British Sociological Association’s (BSA) annual conference in the lovely surroundings of Glasgow Caledonian University. This involved a mammoth train journey, the usual pre-booking of assistance a week in advance and the finding of an accessible hotel room, all of which was going swimmingly until I found my way to the taxi rank. A very pleasant man asked if I could get out of my chair and into his taxi, to which I responded, “No, I need the ramp.” It is worth pointing out here that there was a beautiful fleet of white hackney carriages, relative bliss compared to where I live. The man dutifully got out with a perplexed look on his face brandishing a large key to open up the floor to unfold the ramp. He had never done this before and I was developing a sense of impending doom as he couldn’t do it now.

The ramp made an unhealthy, creaking noise sounding rather like a badly worn, octogenarian hip joint. The result had a definite contracture in the middle of it that should not have been there. The whole car looked as supple as me on a good day. He was able to manhandle me up this undulating ramp into the back of his vehicle, then came the need to fold the ramp back up into the floor. Well that just was not happening. I suggested he wedged of the 3 sections against my wheel, so he could shut his door and take me to my destination. Having got in there, I was not about to give up.

We did this and I arrived at my hotel in 1 piece. He unloaded me in the same, ungainly manner and I left him to the problem of folding his ramp back up into 3 and into the floor. I was sitting in the hotel reception, when I heard banging followed by a string of expletives. Rather embarrassed, I said to the receptionist and queue at large, “Terribly sorry, I seem to have broken his car.”

However, this was all nothing compared to what I had to do to get into my support worker’s grass-green, 3 door, Vauxhall Corsa. To embark on a journey in this vehicle I would stand, bodily hanging over the passenger door whilst my colleague folded my chair and slotted it behind the seats, I would then sit in the seat, bring my knees up to my chest, while my support worker lifted my feet into the car (sometimes having to force the issue a little). Once the seatbelt was on, I was comfortably situated with my knees rammed against the dashboard and my nose practically on the windscreen. On reaching our destination, the above description was applied in reverse. This was done on a weekly basis for around 4 years; ‘needs must when the devil drives’ and drive me he did! In fact, I think this qualified as suffering for one’s art.

I got into my university library this week in the most unique manner possible. There is something about universities where, at the end of term, they become building sites. At least ours does anyway. Every year around this time I begin to get a feeling of dread; my well-practiced routines will inevitably be disrupted by this maintenance work. This time my usual place of study is being renovated to become a teaching area, gone are the comfy sofas, coffee lounge and TV with rolling news. For years my only access to the news as it happened was in this coffee lounge. I have had to find a new haunt.

There are tables and a reading area in the library itself, no cups of tea and cake, but you can’t have everything. Disaster struck this week when I arrived to find a group of workmen busily digging up the tarmac and roping off my usual entrance with tape. Ever intrepid I found the side door and made my way to the lift that allows you to access the main counter; I found it, presenting in the 1st floor position i.e. above my head, with the buttons flashing different coloured lights. I have to say, more in hope than expectation, I depressed the button that should make the lift descend, no response. I prodded a few other buttons just for good measure, then asked a passing member of staff what to do. “Does it have a plug you can turn on and off?” I asked, thinking of the many times my digital TV box had done a similar thing. We found a switch, but nothing seemed to change except perhaps the noise it was making became subtlely different. Ever helpful n the face of my adversity, a staff member went to ring the maintenance department, apparently to turn it on and off required a special key. I sloped off for a cup of tea while he and the key were found and put to use.

Anyway as I said at the beginning, this post may have taken 5 appliances to produce along with a good old dollop of ingenuity, but we got there in the end. What can I say? The world loves a trier. We just have to make this thing go live now, see you in a day or two.

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Economic Predictions of a False Economy!

A few years ago my mum and I were sitting in a hospital waiting room, a situation not uncommon for either of us. Chatting as you do to relieve the monotony we began to wonder just how much of our lives we had spent in this situation. My mum, ever the whizz with number crunching, began this complex calculation. The end result equated to about 12 months as an inpatient at various hospitals and 5 years if you counted outpatient appointments and all other disability related meetings.

The amount of time spend waiting of things got so ridiculous at one point that I considered sending a petition to God for a refund on the bits of my life I had spent in health and social care transit. That is the thing when you have a disability in tow, everything takes twice as long. I have a friend who used to say that having a disability was akin to the scenario of having your first child, it changes life as you know it (something my brother will undoubtedly agree with having had his first child earlier this month).

Change is in the air for all of us. I decided it was time to sort out my own needs that previously had been so deftly met by my late mother. To this end I got myself a social worker; well technically my district nurse did, apparently these services are integrated. I waited a week or so and heard from one of the adult social care workers who made an appointment to see me at my house. We had a discussion about my needs, lifestyle and sources of appropriate support.

The social care landscape has changed significantly over the course of the last 5 years, now many social services departments across the country only provide for individuals who meet the critical and severe category. This leaves a substantial number of people in a black hole; there are those of us that don’t require intense levels of care but we do need ongoing support and care to prevent deterioration to the point where we do require more significant intervention. For example, I require the application of regular emollients and assistance to wash my feet and legs, this prevents skin breakdown, risk of infection and ulceration. However, because I want to continue to try and maintain my independence and only have outside assistance with this particular task, there is seemingly no criteria I meet that would initiate statutory provision.

I have been told to source the support privately, which I am happy to do. This has created a very interesting dilemma, finding an organisation that provides this service, covers my geographical area and is willing to come out for 2 calls per week of half an hour duration is like searching for gold at the end of a rainbow. I have never had this experience in any other walk of life. I cannot imagine walking in to a shop and trying to spend money, only to be turned away. It does seem financially sensible and it certainly in my opinion lacks good business sense.

The best I seem to be able to do currently is sit on a waiting list and wait for new arrivals to one care agency to be trained up in about 6 weeks or so. This process has made me realise just what a precarious situation I am now in. Support available would seem to make it almost inevitable that my situation will deteriorate to a critical point, where I will need costly, intense support and possibly hospitalisation. This has got to be a false economy in every possible sense.

Too Much of a Bad Thing

One Sunday night about 18 months ago there was a knock at my door, I opened it to be greeted by a smartly dressed young man. He proffered his badge and informed me he was working to collect donations for a cancer charity. He gave me a statistic that one in three people will be affected by cancer during their lifetime and went on to ask if I would like to donate money regularly to fund research into cancer and its treatments. I responded that I would give money regularly to cancer charities when neurological disability such as cerebral palsy got the same level of publicity and financial backing.

I have to confess, it had been a bad day. I was coming to the end of my battle with Social Services to obtain support to enhance my quality of life, give me a purpose and help me achieve some life goals. Whatever I did, I felt like I was falling through the cracks. I felt very vulnerable with only family members and a bit of private support I was able to fund with my Disability Living Allowance. It exasperated me that people grasped the need to provide good support services and treatment for cancer but seemed to be blind to my situation.

However, three months ago now my political stance regarding cancer charities came back to haunt me in the very worst possible way. My mum, who had been ill for some months, was finally diagnosed with a rare form of cancer. You see the adverts on TV of people falling backwards having been hit by the tsunami of their diagnosis, that’s exactly what it was like. Cancer has always been in the background, like the mist and fog which comes with the onset of winter. The women in my family carry the predisposition to develop breast cancer, lumps, bumps and breast changes all of which were openly discussed. I was almost blasé, when my mum told me that a breast biopsy had revealed a high risk of malignancy and she had decided to undergo a mastectomy.

I have to say mum sailed through the whole thing; applying the same logic and fortitude to her recovery as in the past she had to my physiotherapy, that good old ‘no pain no gain’ ethos. Within a month she was back to helping me with physical tasks and even lifting my wheelchair in and out of the boot of the car, not medically recommended. I have to confess to breathing a sigh of relief as the risk, in my eyes, was gone and the panic was over.

Two things are interesting about the current situation: one, the cancer was a type that was entirely unexpected and two, the diagnosis has led to some odd conversations with my mum. For example, immediately after announcing that she had cancer she told me not to worry as my dad would be able to epilate my legs. This was the first of my personal care issues that she reassured me that dad was going to learn to support me with. I find it fascinating that of all the things she could worry about, leg hair was a priority.

I have now found myself judging mum’s health and wellbeing by whether or not she comments on my posture. Historically she has been like a human spirit level when it comes to how I sit and stand, whether my clothes are on straight and if my trousers need pulling up. When she has been really poorly, this level of awareness disappeared and I thought I would find it restful, but found that I do not. I have resolved never to internally whinge about this ever again.

Similarly, now dad has taken over many of the household chores he has begun to apply his engineering training and logic to various scenarios. He has a complex spreadsheet to help him organise the weekly food shopping, column headings are: item; need it; got it. Despite this he managed to forget the milk recently as they fell off the end of his sheet. Interestingly, mum has noticed that the food bill has inexplicably gone up.

Mum has developed more of an understanding of the necessity for television, the lack of which created a 2 day stand off when she was allocated the 1 bed in hospital where the TV did not work. She had been in there for 7 weeks and felt isolated from the outside world. It proved to me that the little things really do matter.

Once someone close to you has this diagnosis, you feel that it is everywhere. Dad and I went to the canteen at the hospital and the lady at the till asked if she could interest us in a cancer awareness badge, I told dad that I thought we were aware enough of cancer without the need for a physical reminder.

Dad’s car previously used to be an engineer’s mobile office and now routinely carries 2 wheelchairs. It has begun to resemble a patient transport ambulance. Dad is now becoming as conversant with the lingo of hospital as mum and me and has to work out what to do when both mum and I have a hospital simultaneously, which has happened more than once.

Dads are much less tolerant of NHS idiosyncrasies, he will ask the question, “Why is that desk so high?” and “Why are all the bins in this hospital foot operated when half the people in here lack the use of their lower limbs?” Compare this with mum’s perspective that yes, in an ideal world there would be a low counter but we have more pressing issues so, we have to pick our battles wisely.

The transition of moving from mum’s care to my dad’s is taking some adjustment for me. Dad and I are not so polished as my mum but, like many British institutions, we get there in the end.