Category: Experiences

Care companies come in all shapes, sizes and qualities. I’ve had excellent experiences, bad experiences and yes ugly experiences. Ugly in the sense of the bad side of human nature, not ugly physically.

I won’t name any companies, although the companies referred to, if reading this will recognise themselves. My first real story will show two sides of things, good and ugly.

A few year ago, we had a care company for a short time, who seemed to be working out fine. Most of the carers they sent me were really nice, friendly, helpful and kind. One day one of the carers managed to catch my foot, while I was in a collapse. I was obviously unable to move it. It hurt a lot, and she was very slow to do anything about it. When Mary heard what had happened, she was understandably upset. The next day when the same lady came back Mary challenged her about it. Instead of listening to Mary, the carer said, “Take it up with the office.” Then proceeded to scribble copious notes about the incident in my care plan. Mary asked her to leave after that rather than do any personal care for me.

A couple of days prior to this event, we had introduced this same lady to therapeutic lymphatic massage. It’s something my previous carers had done every day for me and so we were introducing it to the new company. My first carers were directly trained at Bridgewater College on a specially tailored course. The course was no longer available to my carers. Fortunately, the tutor had allowed the course to be videoed for future carers and one of my carers at the time had volunteered to be the guinea pig for the demonstration. It would take a pretty filthy mind to see this therapeutic massage as anything other than the therapy it was. We hadn’t allowed for how someone looking to get back at us for asking them to leave could twist and distort the facts.

Later in the day of the incident, we phoned the manager of the care company to ask that he didn’t send the same lady back. By this time the carer who had injured me had already returned to the office. Shockingly we were told that they would no longer provide care for me. She’d told the manager, her close relative, as we later discovered, that I wanted sexual massages. We obviously explained the true facts, but he was uninterested in facts and chose to believe the lies told by his family member.

We had given the carer a copy of the training video to look at and learn from prior to doing the massage. She had given this to the manager but neither of them had actually viewed it. Instead they believed their own imagination of what it contained. It doesn’t say much for their imagination. Because when I suggested the manager view it, his response was “I don’t want to watch such disgusting filth.” Rorschach ink blots spring to mind here. In other words, they both imagined what was already in their own minds, which had nothing to do with reality. The worst of it was that Mary had a wedding to go to that coming weekend and they were just cutting us off immediately with no warning. I had no care cover from the next day. That was devastating.

Then comes the good. In desperation of what to do next we rang around other care companies. A fairly new one had started recently in the area. In contacting them the manager not only got everything set up within a couple of days, but she personally did my care while Mary went to the wedding. By the way their minds were not distorted or perverted, they saw the massage course for what it is. A therapy that helps me in my immobility. Every other care company and carer we have had has seen the massage course for what it is, a therapy. None of them have had the distorted view of the other company. I will let you draw your own conclusions from that. If you are curious to see what I am referring to, look up ‘lymphatic drainage massage’ on YouTube. It won’t be identical to the Bridgewater course, but it will give you an idea of what I am talking about and why the manager and carer who thought it was some sort of perverted sex massage have big issues they need to look into themselves.

Most care companies don’t really come into any extreme, they are just average. Like most of us sometimes they fail, sometimes they succeed brilliantly. I have found over the years, that’s true of the companies we stay with. They have really let us down badly at times, not being able to provide cover when Mary had shingles, so she had to do all my care for a few days while she was in agony. But other times they have provided cover over important birthday and wedding weekends and gone well above and beyond expectations.

In reality it’s actually the carers themselves that are the stars in any care company. They are the unsung heroes, the underpaid, over worked and often unappreciated majority. It’s the carers who go above and beyond in helping us, whereas it tends to be the admin which messes up.

Carers are amazing and if I ran the world anyone who cares for people would be paid what is currently paid to those who care for money and vice versa. We live in a back to front world where people are seen as less important than money or things. All the high paying jobs are to bankers and IT experts rather than to those who value and look after people. Where there are large amounts of money being made in care it’s going to franchise owners who came up with national and international franchises for care companies. Next down the pay scale are those who buy a local franchise and manage it. The people delivering care are paid just above minimum wage for doing a largely thankless task. It’s a hands dirty, sleeves rolled up, messy and difficult job, they deal with dementia patients, older people and disabled people like me. They clean up, wash dress, tidy house, toilet people, help with shopping, encourage, act as companions, hoist people, operate wheelchairs, take people on trips out, prompt people taking their medicine, call medical help when they see problems, act as an interface with family and many other small and large things. Yet often they are not appreciated or valued either by those they help, the families or even the companies they work for.

In my ideal world carers would all work in cooperatives sharing the profits and workload. Or perhaps a model similar to John Lewis, a partnership where the boss can never make more than a certain multiple of the lowest worker and everyone is a partner in the business. Rather than the profits heading upwards to millionaires. There would be less paperwork that really only acts as a fallback for litigation and more actual guidance and care. Less repetition of what needs covering and more common sense. Less layers of bureaucracy and more streamlined care. I know it’s easy to criticise and hard to actually fix things, but the answer is not to accept that carers should be low paid and on zero hours contracts. Carers should be valued and well paid, their worth acknowledged. They should be on proper contracts. People who care for people are vital to our society and should be seen as a vital part of it. Believe me if you spent as much time with carers as I do, you would realise what a truly amazing group of people most of them are.

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Have you ever heard of body mapping? Neither had I before I was ill. My first experience of it came in a care home a few years ago. First I promised in a previous post I would explain about two carers being assigned to me at once, well here we go.

Because I am very limited in my mobility and I need hoisting for transfers, plus in a collapse I lose most muscle function I am always allocated two carers in a nursing home. They are not always needed, but they are always there when I’m in a nursing home. It’s probably a health and safety thing. They have portable hoists that need two people and they always put both bed sides down at once. Whatever the reason, it’s different to at my own home, where I have one carer at a time.

On my arrival day for a respite stay in a nursing home, the first job is a body map. This is to check my naked body from top to tail for any marks, wounds, pressure sores etc. They are then mapped on a drawing for reference. That way if any new ones appear in the week, they were obviously caused while I was staying at the home.

The process involves the two women, I only have female carers, standing either side of me peering intently at every inch of my body while making notes. Yes it does feel just a little embarrassing. I have been to other establishments that do it much more subtly, while doing my first bed-bath for instance.

A bed-bath by two women is an experience in itself, one either side of the bed. Being undressed, washed, having cream applied and dressed by two pairs of hands at once is, to say the least, confusing mentally and physically. They say patting your head and rubbing your tummy is confusing.

I can imagine that some men reading this might think it sounds like it might be fun. Some might even think it’s a sexy notion. Let me just put that idea out of your mind. Unless you have a perverted desire to be a baby again, then there is nothing but embarrassment involved in this. I use humour to help me cope with it. I use humour to help me deal with being cared for generally. The first time I had to be undressed and washed by two women I’d never met before, it was not exciting, it was horrifying. Now I just don’t think about it, I laugh and joke with them. It’s much easier coping with the one to one care I have at home with carers I get to know over time

When I was well and, on my feet, I was extremely active. I never used to lie in bed in the morning and I didn’t really enjoy sitting watching TV. I was a bit hyper active, preferring to walk places rather than drive, make things rather than read. Ironic then that the illness has limited me to bed and made me so reliant on others.

When we used to have visitors, I would always leap up to make drinks and be quick to cook and or wash up. I actually enjoyed tidying up!

How frustrating then to have to sit or lie down and watch others do everything for me. The most frustrating thing being when someone helps me with DIY, I want to be able to do it myself again.

There was one time, years ago, when we hired people from a local, low cost, social services funded group, to do some work in our house. I needed the TV putting where I could view it. That involved moving the TV and aerial, a job I would have expected to take me less than an hour. I watched the guy work all morning in fascination wondering just how long it could take to do such a simple job. In the end it took 4 hours! I was glad their hourly rate was so low. But I was also frustrated I couldn’t just get up and do it myself.

Many times, my wife Mary is rushed off her feet sorting out the house, organising everything ready for my carers and looking after me when I have no carers around. I have carers visit around 19 hours a week. As I need to be looked after 24/7 that means the remaining 149 hours are down to Mary.

We often find that everything happens at once. When we arrive back from a trip out there is a lot to do. Mary must remove my coat, then hoist me out of the wheelchair into my bed. My bed is in our front room and that is only small, so the wheelchair needs taking into the kitchen to give room and be charged. Then she needs to take off my sling, put up the bed sides, remove the sheets that protect our carpets, wheel across the trolley that holds my urine pots and off course empty them. Because of course I need to use them. If you are a man and have ever tried to wee sitting up in a chair into a urine pot, you’ll understand why I wait till I am in bed if I can. For the benefit of women reading this, you get easily injured, enough said. My drink also needs filling. Then my duvet needs bringing across along with a pillow for my legs to rest on and it all needs tucking in. When you are immobile your feet get very cold. Add to that the fact we often arrive back at meal times, the phone often seems to ring, or someone calls at the door and you can see how busy it becomes for Mary.

One time I was in the middle of being dressed in my pyjamas on arrival home, fortunately I was in my underwear, when a delivery driver found his way into our back garden and was knocking and waving at me through the window while I grabbed a blanket.

As I watch Mary rushing around getting everything ready, waiting for a duvet or drink or a urine bottle. I just wish I could get up and get it. It is very frustrating to look at something just beyond my arms reach, that would perhaps be only one or two steps away and just not being able to get it myself.

There was one time when I was so desperate to reach something just out of my arms length and Mary was extremely busy. So, when she was in another room sorting things out, I decided to try and reach it. The cot sides on my bed only go to half way down so I dragged myself to the bit without bars and sat on the edge of the bed, holding the bars. Still I couldn’t reach. Then I thought ‘maybe if I knelt on the floor?’ My bed is very low to the floor and I have quite long legs, but even so I dropped quite hard onto my knees. Hard enough that they bruised, and I had to explain to my carer the next day what I had done.

Now here’s a thing I should have realised, I can’t stand up or weight bear because I lack strength in my legs, all my legs, not just below the knees. So, you can probably guess what happened? I fell flat on my face. After I recovered, I used a great deal of effort to drag myself back onto my bed before Mary came back through. I still had to explain it to her. Obviously, I was exhausted, I caused a collapse, I was bruised. I never repeated it. Yes, I can be very foolish.

It’s easy to take for granted the simple things of life. Being able to get your own drink, go to the bathroom, fetch your coat, walk across a room, wash up, so many things you do without thinking. When they are gone, each one is a mountain you can just look at in wonder and be amazed you could ever do it.

Mary and I on a trip to Dawlish a few years ago