It’s a Smart life

Back in 2014-2015 I had a Mother. OK so we all have Mothers, even if we’ve never known them and I’ve had one since birth that I do know. But this Mother was a 6” white plastic electronic unit with a big wide bottom and a narrow top, blue glowing eyes, red lips and a tendency to make weird noises. Don’t say your Mum’s like that, it’s rude. My unit was a Sense Mother, one of the first the Internet of Things (I.O.T.) smart devices. From such humble early devices, it’s a surprise the idea ever took off. My Mother was a crowd funded device, made in France and unfortunately the company has now gone bankrupt. Probably because Sense Mother didn’t do enough things to make it useful.

Sense Mother

The idea sounded great back in 2012 when they first talked of developing it. The concept was of a smart unit that would monitor your life and give you prompts. The slightly creep advertising talked of a mother better than your own. It certainly wasn’t that. But as someone who needed prompting to take tablets, monitor temperatures and wanted to know when people came in and out it sounded great. In practice the reality was more limited. Little devices called cookies were attached to things you wanted to monitor and when they moved the Mother unit registered their movement and checked the temperature around them. It’s ability to register movement was limited in distance and type. So, I could know if I had picked up my tablet pack and I knew when Mary returned home by the front door monitor clunking. But beyond that it really only enabled me to monitor temperature in different rooms.

Fast forward to 2018 and the I.O.T. had leapt forward. Amazon Alexa devices, Hive heating, smart plugs, smart cameras, smart switches all connected and controlled through the Internet. They could be controlled via voice or directly on an app. Enabling me to radically improve my setup last year. So that now I have Amazon Echo devices in all rooms. The one next to me even has a small screen. I can use my voice to call any or all other rooms. Which means wherever Mary or my carers are (including the garden, I have a portable) I can request help. If I don’t know where they are, I just broadcast everywhere.

Echo Show, like I have by my bed

I can view any of my external or internal cameras by requesting the relevant one with my voice, “Alexa show front door”. I also have a Fire TV stick, so that I can display the front doorbell come camera on the TV. I can even talk to a person at the door. The Hive heating gives me control of the heating, “Alexa change the heating to 20 degrees”. Smart switches and plugs give me control of some lights, “Alexa all lights on.” I have control of devices around the house. Before I get transferred into my reclining chair, I can turn on my ripple cushion by voice. When we go away, I can turn off the ripple cushion on my bed. There are several switches that cannot be changed as they are too complex and therefore too expensive. The ones I have changed have been presents for Christmas, Father’s Day and my Birthday. The Hive heating and Alexa were a grant to give me control of the heating from my bed. Most of the smart cameras I won in free competitions. That’s how to have a Smart house cheaply.

Hive Thermostat
Netvue Doorbell camera

One of the big frustrations of limited mobility is lack of control. Smart technology gives me back at least a little control. I would love to have electric curtains/blinds and even door controls, electric door locks do exist, but those are beyond my means. I would also love a smart hoover and a smart mower but the same applies. There is a lot of smart tech out there that I will never be able to afford.

On the none smart, but useful to control side, I love the fact that I can operate the control on my hoist and the control on my profiling bed. It’s also wonderful when I am in the park or a large building so I can operate my own wheelchair. A lack of control is not pleasant. I am so pleased to live in this modern age with modern technology. The speed of technological advance in the last few years is amazing.

I know a lot of people worry about smart devices monitoring their conversations or smart cameras monitoring their actions. For me the control and convenience outweigh the loss of privacy. Let’s face it, I don’t get much privacy in my life anyway. So, wherever I can regain some control I will.

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A basic misunderstanding

“You’re the client.” I have heard this said to me several times by care companies as an explanation of why the focus is mainly on me. Mary and I are a couple and the care allowance we have been granted was granted to benefit us both. It is to enable me to be washed and dressed, but also to give Mary a break. Both of those factors are mentioned in the care statement.

One of the biggest misunderstandings I have come across in care is the idea that I am separable from Mary in care companies’ dealings with us. This can cause huge problems and is the main reason we have seen certain carers as more suitable than others. A carer who ignores Mary is totally unsuitable. As with most people, I may enjoy being the centre of attention, but I don’t enjoy my wife being ignored. You would not believe how blatant and rude it can be. In the past we have had carers who have not even said hello or goodbye to Mary. They respond almost in monosyllables to questions she asks. We are a couple and even though I am the client, my care fully includes Mary. Any care for me must fully involve Mary. If she is in any way excluded or ignored or if her wishes are railroaded, the carer is unsuitable.

If a carer takes over our home, putting things where they think best, without asking Mary, that is only going to cause problems. Imagine coming back and trying to find your coffee cup only to find it has been put in a cupboard you never use, out of your reach. It can negate the benefit of a break if too much hassle is involved in finding everything when you return. It is always best to ask. Mary tends to say to carers “if you don’t know where it goes, leave it on the side, don’t guess.”  

Another area that is overlooked is Mary’s role as my main carer. Because of this role, she always asks the carer as they leave if everything is alright. The purpose of her question is the same as that of a handover in a care home. Are there any issues she needs to know about? You would be amazed how many carers have said to Mary “yes everything is fine.”, having just filled in their care notes details of a problem they’ve found, a mark or bruise that needs monitoring. Because they obviously mention it to me, Mary finds out from me. But if I had dementia she would be in the dark. It’s a big problem and one that some carers need to be more aware of. With couples, where one is the main carer for the other, that partner needs to be kept informed of any issues.

We are slightly unusual in terms of care. I am younger than many of the people the agency we use cares for. Perhaps if we were both much older things would be different, but I would assume even in that case the partner would want to be kept fully informed. I would also assume no one would enjoy having things moved to places they couldn’t find them.

Let me balance things now. The current carers we have are excellent. They fully include Mary and do not leave things in places where she can’t find them. They keep her informed and communicate well. That is why they are the carers we have stayed with; they are very good. There are previous carers we have had who have moved on to other companies who we keep in touch with. They were every bit as good and we miss them.

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Mary & I on a trip out

“Had a good sleep?”

“Did you have a nice sleep?”, he said it as a jokey comment, meaning to make light of the fact I’d just come around from a collapse. Words very similar to this are said to me all the time and everyone thinks they are being light. I suppose some cases there’s a genuine misunderstanding and they really think I’ve been asleep. (see photo)

I used to watch thrillers where one of the main characters was dosed with a paralysing agent. They would be lying on the floor unable to move and watch as a murderer entered the room. They would be completely at the mercy of the murderer. That sense of being helplessness in the face of danger is not an uncommon fear, we experience it in dreams, being frozen in the face of danger. In all cases it is very unpleasant and not something anyone would crave.

It is similar, if not identical to what I experience. It was when I was first struck with what I now call ‘collapses’, that first I experienced the reality of this. I become like a rag doll, unable to control my movements, not a rigid paralysis, but a complete loss of voluntary muscle control of my arms, legs and neck. My eyes are also closed. I can breathe and with some effort and concentration, talk, I have gained better control of this with practice. Over time I have realised that I can breathe and talk because my core body muscles are not affected, just everything attached to my core. I should just point out that danger, pain, discomfort or shock do not cause my muscles to move. One other thing that demonstrates this is not a choice (me just deciding not to move), but something neurological is that my autonomic reflexes are muted to non-existent when I am in a collapse. I know this because they have often happened when doctors are around and can run tests. This is a very rare condition and according to doctors I have chatted to, know of only a handful of people this happens to. Because of the sudden onset of these episodes, they are classified as fits or seizures and I am not allowed to drive or operate my wheelchair on a public highway or path. It’s also why I have bed sides and a supported wheelchair. I have written elsewhere about this (The cot sides).

When we sleep, we are obviously vulnerable, but we are also unaware of that vulnerability. In a collapse I am fully aware. I am completely conscious. So that if I am lying or sitting fully awake in a busy environment hearing activity around me and not knowing what might happen it is very unnerving. That’s why it took me so long to venture out. I used to choose to stay inside. It was safer, I recovered quicker because I was less anxious of what would happen, and it was less tiring. I had to learn to cope with the anxiety to be able to face going out. I learnt to control my fear by meditation, breathing deeply and focusing on God. In my head, I pray, sing Christian songs and sometimes just take my mind on imaginary journeys, all to distract myself. This doesn’t take away from external jolts into reality that can cause me a sudden and unpleasant shock. Even something as simple as someone suddenly grabbing my arm to say hello is shocking when you don’t see it coming. In my wheelchair if a child decided to switch on the power and operate the chair you can imagine the consequence. Hence, when I am in a collapse in a public place Mary or my carer stays next to me. In a park or garden there are extra nuisances, wasps, bees, even flies. Have you ever had a fly crawl on your face and been unable to brush it off? Or what about a bee? I have, it’s not pleasant. If you start to think about it, you will realise why I must have someone with me. There are many hidden dangers if you are on your own in a public place and unable to function. There’s also the added possibility someone might phone 999 if I was unattended and looked unconscious.

Sleep is refreshing and leaves you feeling ready for the day. After a collapse I come around with achy muscles and often very relieved it is over. They are not in the least comparable. That is why I don’t really like it when people say, “had a nice sleep?”

I realise that it must seem as if I have many criticisms to make of what others say. I am just as likely to say the wrong thing. I only point out unhelpful comments to try to educate and help people. I have had things pointed out to me many times.

Here are some of my classic blunders in the things I say. Taking the credit for what others do is a big one for me. Very often when Mary arrives back and is chatting to my carers to catch up, I will chime in with how “We, have washed up. We have hoovered. We, have tidied this or that.” The funny thing is the carers never point out I was just watching.

I am far too quick to criticise when I don’t like something and far too slow to thank Mary or my carers. It’s easy when you are limited to get focused on yourself, your world does get reduced, so in a way it’s understandable. But that’s never an excuse. It’s because I realise that I need to learn and get better that I also share things that may help others.

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Me in a collapse at RCH, Dawlish. You can see why people think I am asleep.

You’ve had your chips

Chips, chips and more chips. I really love a bag of chip shop chips. After her stroke a couple of years ago Mary must avoid fatty food, so I don’t suggest that we go out for chips. But when Mary goes to visit her dad and I have a carer for the day my first thought is ‘chips’. Well maybe it’s my second thought after getting ready in the morning.

There are two places locally we go to eat our chips. The Quaker garden, a little quiet garden behind the Quaker meeting house, off Wellington High Street and Wellington Park. Often, we will eat chips at the Quaker garden and then carry onto the park. That way the chips stay hot as the chip shop is near the garden.

Wellington park, in case you’ve never visited, is a great place for a wheelchair. Getting there is not so easy. Wellington High St is an obstacle course and whether you take the narrow alley by Lloyds bank or the car park it’s a bumpy ride. Going across the path by the football field and cricket club is like a potholing trip. That is if you are trying to avoid potholes. There are some places where that’s impossible and the articulating suspension on my wheelchair gets a good workout. The tiny car park opposite Wellington Park is best to avoid at school arriving and leaving times. It’s not big enough for all the cars that try to squeeze in and it’s really a case of taking your life in your hands when weaving through the cars.

Once you enter Wellington park you feel you have stepped back in time. Of all the parks I have visited it is one of the prettiest. It’s also one of the best used by the greatest age range. There’s a family feel about the park. Some parks feel like spaces for the young or old, Wellington park feels like a place for all. The borders, though a bit of a blast from the past, are beautiful and well kept. There are winding paths, surprises around most corners. A bandstand that has live music for three months every summer and many events over the year. There is also a large and beautiful pond with a Chinese bridge at one end next to a waterfall.

There are trees to look at and even climb, a classic fountain and a fun and almost invisible feature, a ha-ha. If you don’t know what that is, then think invisible fencing. A drop off in the grass to give you an unimpeded view from park to countryside. In these days of health and safety gone mad, it’s survived without fencing.

The best and most wonderful things about Wellington park for me are that it has new tarmac paths, they are super smooth and I can operate my own wheelchair in the park. It’s quiet enough at the times we go to not risk the safety of others.

There is an old fashioned four-sided covered seating hut. One wet day I was visiting the park with a carer and we decided to shelter there. The lowest part of the shelter still had a 2” step up to it. I positioned my wheelchair and powered up it, the wheelchair lurched up and the front two of the six wheels flew in the air, the whole chair seemed to fly. It didn’t really, it just felt that way. With a bang the front wheels hit, and the chair stopped about an inch before the seat. I hadn’t noticed what a white complexion that particular carer had before that moment, nor did their complexion seem as white later on.

The other really nice feature of the park is a beautiful house built around 1900 that is still lived in by the park keeper and family. I have seen a glimpse inside through the front door and I hear the inside is really lovely.

Mary and I go regularly to Wellington park and I go there when I can with my carers. It’s a little haven of peace in the middle of Wellington.

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Music at Wellington Park

Disability and the state

When I was younger, I studied social work as an ‘A’ level at night school. My enduring memory is of the night I turned up to watch a cine film. This was the 1970s and you first need to know I have played with and used cine film and projectors since I was very young. The teacher, a woman, was trying to thread a 16mm film into the projector. I went over to offer to help as I know what I’m doing.

She said, “what makes you think you could do this better than me? The fact you’re a man?”

“No, the fact I’ve used cine projectors for years,” I said.

She was still reluctant to accept my help. I realise she was a bit of an extreme feminist, but that event and the course material from the 70s forever influenced my view of social work. I know that’s very unfair of me, but I’m human, I jump to quick decisions about people and ideas. I will give myself some credit though, I am open to changing that opinion.

I had the mistaken idea that social workers were a group of misguided do gooders. I also thought they were set-up to sort out the “dregs” of society. Clean up the mess that no one else was interested in. I certainly didn’t see them as having any relevance to me.

Imagine my shock then when in 2013, I was assigned a social worker for the first time. Even being in contact with Adult Social Care felt like I’d failed. As if somehow it reflected on who I was. I doubt I am alone in feeling that.

Let me take a step back even further than that. I was first unable to work due to illness in 1994. The private company I work for fired me for being long term ill. I suppose that’s fair enough as I had started up and headed a department that was marketing a brand new range of products. Without me, there was no department. They closed it after I’d gone and gave the business I’d hard won directly to the manufacturers. I was suddenly left unemployed with a family to support. Due to my illness Mary had to be around to look after me and couldn’t go back to work.

I grew up believing in hard work and not hand outs. But once I could no longer work, our only choice as a family were benefits. Reluctantly that’s the route we were forced to take. If you’ve heard how difficult it is to get and maintain disability benefits then let me say you don’t begin to grasp the hoops you have to jump through. It’s harder than you can imagine. Being ill and having to fill out long forms and have face to face meetings is stressful and makes you worse. It took me days to fill out each form. Because I was so ill, not only did I get the benefits I applied for, but at one of the face to face interviews the doctor (they were doctors then) suggested I apply for additional benefits, which I then got. As my condition worsened I eventually needed not just financial help but physical care. That’s where social workers first came in. They coordinate and authorise carers and later if you choose direct payments, then the payments. They are part of the team that includes occupational therapists and district nurses who initially assess you. They also recommend and highlight options to help day to day needs when you first contact adult social care. I doubt I have included everything they do as I am going on my observations rather than a crib sheet. When I first had a social worker you were assigned one for all your time. Now you start with one for a few months and then any social worker on duty will deal with you.

It may appear externally as if illnesses or disability in itself is a limitation and embarrassment. But for me I have found the intrusion into my financial and personal life by the state as represented by the DWP (Department of Work and Pensions), far more limiting and embarrassing. We were one of the families chosen for a full in depth check a few years ago. I seem to be regularly checked up on, but I guess that is the system. The DWP basically take your privacy apart. Looking at every statement, transaction, and invoice; spending hours in your home investigating you. It’s like being treated as a criminal, they seem to make an assumption of guilt, and you have to prove you’re innocent. I was and am innocent of cheating the system so that’s OK, but it doesn’t make it less stressful or embarrassing. You may think it a justifiable action to catch those who do cheat the system. But much more money is stolen via tax fraud. I don’t see millionaires being subjected to random in depth checks based on assumption of guilt. If it’s about ensuring the government isn’t cheated of money that would be a fair comparison. Illness and disability are really tough in themselves, the state shouldn’t be making it harder for the minute saving they make.

I understand that when you receive help from the state you should expect scrutiny. But, let me explain it this way. I started work at 16, I didn’t go to a brick University, I started paying tax and national Insurance at that point. I was able to work full time until I was 33 before I became ill. I worked part time whenever I was able to after that. My understanding of any insurance is that you pay it so that in the event you need to claim on it, you are covered. If you claim on your house insurance are you made to feel a pariah? Why should I feel that way having to claim disability benefit from my national Insurance. I am not making a choice not to work, I cannot work. Whenever I have been able to, I have. Surely that’s what disability benefits are for. I should not feel guilty or a lesser citizen for receiving them. Disability benefits should be a safety net for those of us, who through no fault of our own are prevented from working.

Let me finish with my personal experience of social workers. I have known several really good social workers over the years. I won’t name them. They have been compassionate, kind, caring, helpful and understanding. Without their help we would have been in a far worse mess. My misunderstanding of what social workers were led me to have an initial anxiety about meeting them. Now that I have know several I realise how wrong that expectation was. I can only say if you are a social worker, thank you for your dedication and hard work. If you are going to be meeting one, you will find them helpful and understanding.

How can it be OK?

It’s an odd situation we are in. On the surface everything has gone wrong. I lost my independence, mobility, ability to work and hadn’t even finished the work on the house we own. Yet I am at peace and joyful, I won’t say happy because happiness is based on what happens. Joy is not based on circumstances. You can feel joy when everything goes wrong. You can feel joy even in the hardest of circumstances. You can be at peace in the midst of difficulty. That’s what this blog is about a positive viewpoint on a difficult situation. How can things be OK, when everything is wrong?

The situation we are in doesn’t have to rule the way we feel. Feelings are deceptive things anyway, they so easily rule our hearts and minds. The one thing I have found that is unchanging and sure is my faith in God. I can hear all my non Christian readers turn off here and stop reading. But persevere a little longer. After all, I am saying this as someone who has truly tested this out. So maybe I have something worth hearing.

Faith is not religion, religion is not faith. There can be faith in religion but most often religion is just a blind obedience to a set of rules. A legalistic obeying of laws and statutes expecting a positive result. I am definitely not talking about that. You will not find peace and joy that way, because ultimately that is empty. I am talking about living faith.

What I have found to be true is that knowing a personal God, who also knows you and has a relationship with you transforms your life. Faith in God is life changing.

Forget harps, old men with white beards or dusty old books. I am talking about human relationship. We all understand that and feel it’s lack when it’s missing. God didn’t just create humanity and leave us to it. He saw the mess we were making and came into the world he made as a human being. Jesus was fully human and fully God. He wasn’t a blueprint of a future kind of human. He wasn’t a man pretending to be God. He wasn’t an angel. He wasn’t a prophet. He was the one and only, unique son of God. Fully God and fully human.

What on earth am I talking about!? God as a human. Am I mad, don’t I realise how crazy that sounds. Yes I do. There are many incredible and crazy sounding things in this universe that God created. Particles of matter that can be in two places at once. A force that cannot be seen or fully understood and yet holds everything together, gravity. Something that fills the gaps in the whole universe, dark matter. A perfect balance of push and pull at the big bang that prevents the universe collapsing. The more you look at the universe the more amazing and puzzling it is. I don’t have to be able to explain everything to know truth.

I know what love is, not because I can analyse it. I know what compassion is without pulling it to pieces. I can feel the benefit of mercy without fully understanding it. God loves us, God has compassion on us, God shows us mercy. We may not understand his reason or how he does it. We may not be able to explain how he became a man in Jesus. But we can know it is true. We can feel the transforming power of his love.

Before I realised that truth I was a loud voiced mocker. I see many such mockers now on facebook. We tend to mock two things, things we don’t understand and things we fear. Often our fear is that it’s true. That was the case for me. The more loudly I mocked the more it expressed my desperation. So I don’t feel anger at those who mock. I understand something of what they might be feeling. I know God loves them anyway.

Let me return to why I am at peace and I feel joy. It’s because I know God loves me. Jesus has made that known to me. But how you may well ask.

“Sticks and stones may break my bones but words will never hurt me.” And, “A rose by any other name will smell as sweet.”

Two really well known but equally untrue quotes. Words are very powerful things. Ask any psychologist, in fact ask yourself. What words said to you as a child still ring in your head as an adult.

Jesus is The Word of God he embodies God’s Word but he also spoke it. When we read God’s Word as recorded in the Bible and we receive Jesus the living Word into our lives then God’s transforms us. For some that transformation is instant and dramatic for others slower and less dramatic. But everyone who accepts Jesus Christ into their lives will be changed. The Word of God has the power to change our lives.

It is this change that means I can cope in the midst of disappointment, despair and seeming hopelessness. Because with Jesus there is hope and a future.

Some of you will know that in May 2015 (see video below) I had a miraculous healing, one that the doctors still can’t explain. For about two and a half years I could walk, and even do work on our current house. When in January 2018 that ended and my health again declined, I was devastated.

You may be aware that the most effective form of torture is to stop torturing someone, pretend to let them go and them re imprison them and start again. Doing this can completely destroy a persons spirit. I felt a bit like that. I had been free, able to walk and work, then it was taken away again in an instant. I reeled at the unfairness of it. I shouted at God about it. He is big enough to take that. When I had calmed down I felt I got an answer.

God had not taken anything from me. On the contrary He had given me a gift. Two and a half years of being able to walk again and being able to do normal things. A wonderful, brilliant gift. Far from being angry at the loss, I became thankful for what I’d enjoyed. I started to enjoy re living what I had done. Then I realised all the blessings God was giving me in this new season. The amazing carers God was bringing along for me to meet. The opportunities I had that previously I hadn’t enjoyed. Everything looked different and my joy and peace returned.

Whatever is thrown at us we can find peace and even joy. You might think it’s an empty joy based on nothing. But you’d be wrong. I have a depth of strength and durability to my faith that stands up to the rigours of life. Faith means you can put your weight on it and it can take your weight. My faith in God can bear the greatest testing. I can put all my weight on him. My faith is stronger than a reliance on material things. They come and go as I know all too well. God is unchanging, He is faithful and true.

To a lot of people Jesus Christ is a swear word. To me he is my way, my hope, and my life.

I am aware that I raise as many questions as I answer. One place that’s good to go and explore those questions is a local Alpha course. They are free to attend and run all over the world.

Find one near you

This video doesn’t exist

Me able to walk in 2015 following a miracle.

1st Day on my feet in 4th May 2015 (the 2.5 years of being able to walk)

Planes, trains and automobiles

I discovered the other day that it’s physically possible to fly in my condition. I don’t yet know if it’s practical, but it’s something airlines can do. Apparently when a wheelchair user can’t transfer from their chair by standing or walking there are two options, depending on the airport. 1/ Some airports have hoists that take you from outside the plane to your seat. 2/ Some airports use a few people to physically lift you from your wheelchair to your seat. No extra cakes before your flight then eh? Of course, in my case that doesn’t answer the problems of what happens if I am in a collapse at the point of transfer. I can’t be hoisted when I’m like a rag doll. Or whether I could sit in an airline seat, would it be supportive enough when tilted? I could certainly take a pressure cushion and my neck brace. First class would work, but prices are crazy. I won’t give you the nitty gritty, but as I can’t access a toilet on the flight, I do have a way to cover that, external catheters etc. Planes then, while very tricky might be possible. I have never tried it, but they obviously aim to make themselves accessible for people in my situation. Interesting as I had assumed the only way to fly would be on a stretcher by purchasing several seats and therefore well beyond my means.

I have tried the train a few times. It’s an interesting experience. With train travel, if you want the easiest trip you need to book assistance at least 24 hours ahead. Then you are told to arrive 20 minutes before your train. On a cold day, if there is no waiting room that is a nuisance. The reason is so that the station staff can get ramps ready and plan where you need to be. I have only travelled between Taunton and Dawlish, with the occasional enforced stop at Exeter St David’s due to bad weather. Taunton is a great station, large lifts and plenty of helpful staff. Exeter St David’s is similar. Dawlish is a 2-platform station, the staff are great but not always there, so you can only travel at certain times if travelling to Dawlish. Taunton to Dawlish gets you in on the seaward side platform, the only way off that platform via wheelchair is across the railway line, via locked gates. You must be escorted by railway staff. It’s a busy line and we have had to wait 10 minutes to cross at times. As Dawlish is right next to the sea, it’s vulnerable to high waves. When high waves crash over the line they don’t allow wheelchair users to cross the line. Something about not wanting them to surf their way across. Therefore, the rail company lays on a free taxi from Exeter for any wheelchair users. When the line was damaged in the storm and a replacement bus service ran from Taunton, they laid on a taxi from Taunton for me.


Dawlish train station in distance by the sea

One time we were on our way to respite at the RCH convalescence hotel in Dawlish and had a train booked. A storm hit before we travelled and we got a phone call from GWR to say we would be taken off the train at Exeter and taken by taxi to Dawlish. We arrived at Exeter and waited to be taken off the train. No one came, but the train stayed in the station. Eventually a rather hassled looking couple of train assistants arrived. Apparently the person who booked our assistance on the phone had put the wrong carriage on the station system. Then just to add to the confusion, they found in that carriage an elderly lady with mobility issues who was going to Dawlish. So when they had asked about who was needing assistance she was taken to be the one in need. They got her off the train into the cold and wet. It took a few minutes before someone realised it was meant to be a wheelchair user they were assisting. They got her back on and came in search of me. The train was held up about 15 minutes.

Our problems were not over there. Outside the station we were taken to our taxi waiting in the pouring rain and icy cold. It was too small for my wheelchair even though I had told the guy on the phone I needed a big taxi. The driver tried to load my chair 3 times all while leaving our luggage in the rain. I have to hand it to GWR, they stayed with us and when the taxi failed they took us to a warm place, ordered a bigger taxi and made sure it took us all the way to our hotel, no extra cost. They rescued a difficult situation, even though they had caused it.

The lady who had been removed from the train was staying at our hotel and unfortunately caught a cold later in the week. Many people on the train were staying in our hotel and had wondered about the delay.

Trains themselves are improving. In the past they used to lay a metal ramp onto the step of the carriage for the wheelchair to travel up and down. I guess some must have fallen off, which is no surprise to me. As I never felt safe on those old ramps. I used to watch them lay them on the step and make sure they were well in place before I moved. The new trains have a brand new and rather slow system. The automatic doors are locked, a plate is flipped out and the ramp clips into two holes. Therefore, it cannot slip. I watch the process equally carefully to make sure they engage the toggles in the holes. The ramps themselves are not very wide, neither are the doors. But the new trains are massively better than the old. On the older trains I could not always get into the wheelchair space, I sometimes had to stay in the corridor. The alleyways were also very tight to turn in. On the new trains everywhere is wider and easier to access. On some of them I have actually been able to access the toilet.


On a train in First Class (Upgraded as second class off platform)

One extra bit of fun with trains is platform length. For some reason they always put disabled carriages at the end, normally one in first class at one end and one in second at the other. Dawlish station can take a 9-carriage train on the seaward side and an 8-carriage train on the other. So, when we are travelling home, and the train is 9 carriage it depends which end has first or second class disabled as to which class we are put into by the booking service. If they get it wrong, or the dispatch change it, we get moved. We have often travelled first class with a second-class ticket. I guess there have to be some pleasant aspects of disability. I had never travelled first class before, but I do enjoy it now. The snacks, drinks and sandwiches all being free is a great bonus.

Motor vehicles have to be specially adapted for my wheelchair. Vans need a lift or ramps, plus clamping points and cars or taxis need a ramp and anchor points. My wheelchair is so long and high that not every taxi can fit it. It’s a bit of an art being anchored into a taxi. They attach long seat belts to my front anchor points, then I drive the wheelchair in as far as I can just before my footplates make contact with the seats in front of me. To make these lock I should really go back a bit, but my chair is to big for that, so they stay a little loose. Which means the front of my chair can lift about 2-3” on a big bump. It feels a bit hairy. The driver then locks the rear two anchor points of my chair with ratchet clamps. This prevents it moving at the back. If the vehicle crashed, I would not be able to move forward. He also presses a switch to lock the two front seat belt that have retracted as I drove in. I have a car grade seat belt in my wheelchair, but they also add an extra one.


My view in a taxi

Vans vary a lot in how they latch my wheelchair in. In some I have room to recline fully before being latched in. We discovered that the front latching points are on the moving part of the tilting mechanism, so I need to tilt it before they connect the straps or I pull them out of the floor. Vans are very bouncy and a problem I find is being in a collapse while in a van my arms can hang down very uncomfortably. Mary therefore sits next to my wheelchair so that she can hold my arms if necessary. If I set everything up right ahead of time, tighten my shoulder straps, remove my head pillows and have my neck brace on, them my neck stays on the head rest. But once I had my shoulder straps too loose and my head bounced off the neck rest and was hanging by the side of the neck rest. Mary couldn’t reach and we were on a dual carriageway. The driver pulled off at the next exit to rescue me. I still had a very sore neck for a few days. I have mentioned before that exiting a van or minibus involves a big trust exercise on my part. I am not able to see backward, so whether I drive the wheelchair under guidance or whether it is driven I have to trust the person in control. Remember the ramp I reverse down is only a few inches wider than my wheelchair and the ridges at its side are not sufficient to prevent my wheelchair driving over it. I much prefer vans with lifts.


View from my wheelchair in the Slinky accessible transport bus

One thing makes me laugh every time I am loaded in a minibus. The rules of most minibuses say the driver or an assistant has to guide or push the chair up the ramp and back down. This rule ignores power wheelchairs. Modern ones do not have a motor disengage, or at least not fully. Even if they did, my chair with me in it weighs 250kg, that’s a quarter of a metric tonne. Good luck pushing that up a ramp unaided, even better luck preventing it falling. The most ridiculous sight was one respite centre that had a young girl of 17 who was instructed to stand behind the chair to stop it falling. I pointed out, if it fell she would just be crushed. I don’t understand the logic of some places.

Buses are a complete non starter for me. I tried one out once. But the space allowed is too small for my type of wheelchair and the turning space too tight. It has put me off trying again. Coach companies say they cannot accommodate my wheelchair.

I am always glad train companies are so helpful and that we can travel in taxis and accessible vans.

Apparently there are hoists available that can be fitted to ordinary cars, but they cost £3000 and are fitted to one car at a time. My wheelchair would be far to big and heavy to transport even if my friends or family had such a hoist, which they don’t.

Travel is a much bigger adventure when your mobility is limited.

Waiting at a train station

The most amazing carer of all

Mary is my wife, but she is also my most amazing carer. The other day I realised that in my blogs I’ve concentrated on professional carers. Without Mary I would be completely lost, not only does she pick up all the slack but she is my rock and anchor, my best friend and the love of my life.

Mary is utterly amazing. When I totally lost the ability to stand or walk the hospital wouldn’t even let me home before asking Mary this question “are you happy to care for Mike 24/7?” It’s not that they weren’t going to supply carers to assist, in fact we get payments for 26.5 hours a week, which in real terms equates to 19 hours of care a week (care costs are higher than social care payments). But, Mary is responsible for me the majority of the time. So carers on their own wouldn’t enable me to be at home. Caring for me at home is a huge thing for Mary to undertake, it is life transforming for her. She had the absolute right to say it’s too much and after the stroke she had a couple of years ago it is hard for her. I know of several couples where they chose care homes rather than home. Let me show you the real choice she had. I said to Mary that I would be OK to be cared for in a nursing home so that she would not have the weight of my care. She was having none of that and insisted she could manage.

I am not a complete doddle to look after, however it might appear from a quick view on facebook or on a Sunday. I need someone around pretty much all the time. I can’t get things myself, like food or drink, I can’t get myself washed and dressed. I need help with toileting, let me tell you helping an adult with a bedpan is not a laugh. Even if there was a fire, I couldn’t get myself into the wheelchair or get out of the house on my own. I need help with all the basics. It’s wearing, like having a grown up baby. When you marry someone you don’t expect to be looking after them in their 50s.

I would be a useless carer, I am not patient or understanding. I don’t do well with wiping bums or clearing up sick. I coped with our children, because they were children. But adult mess is a whole other thing. Mary copes so well and takes things in her stride. That doesn’t mean she finds it easy, but she does it from love.

When we go out Mary has to overcome her embarrassment in order to move furniture or people and make room for my wheelchair. As we squeeze down roads, into rooms or find places to setup Mary makes space. That takes courage born out of love and care.

The other thing that is really difficult for Mary is giving over her husband and her home to a series of strange women. That’s how each new carer seems at first, it does get better over time. A new lady arrives and takes over my care. How difficult must that be to see your husband being so intimately cared for by another woman and yet knowing it’s needed. How tough is it to have different women coming into your home, your kitchen and taking over for an hour or so. Perhaps only the women reading this will understand that. That’s why it’s so important to find carers that connect with both Mary and I, who understand the whole picture. Carers who we get to know and who get to know both of us. Carers who don’t ignore Mary, but include her. We’ve had carers in the past who see their job as just me. They zone in on me and totally ignore Mary. They don’t last long. It might be fun for me to be the centre of attention, but it doesn’t work if a carer does that.

Illness doesn’t make for grateful patients. It’s not always the fault of the patient. Illness and pain make you grumpy. Tablets can change your character as can many illnesses. So gratitude doesn’t flow easily. Care can be a thankless task for anyone, but somehow it’s often loved ones who bear the brunt. I know I am most grumpy and ungrateful with Mary. I’m much more likely to be sour and negative with Mary than anyone else. I guess we are most real with those we love. The mask comes down. It means Mary really gets the tough end of the deal, negativity and grumps from me then later hearing me laugh and be positive with one of my carers. How unfair is that. But it’s the way it often happens.

Mary really is my most amazing carer, because she is my wife and yet has to cope with all this extra. It’s not how it should be, but Mary has taken a difficult situation and made the best of it. Over all the years of my illness Mary has been incredible. Sitting with me in my pain, praying with me, clearing up the mess, bringing me food and drink, taking me out and about, sharing together, and still loving me.

The good, the bad and the ugly

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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Home from home

“Help, mummy, help me.” The shouting had been going on so long I finally began to switch off to it. Another resident, who was suffering from some degree of dementia, was obviously confused. I was staying for a weeks respite at a nursing home. From my room I could hear the regular visits from care staff to the room of the person shouting, reassuring them and trying, without success to get them to stop calling out. Only time was effective at stopping the shouting as I found out over the week. Their calling was a regular punctuation to the day and night over the week. How the care staff, as busy as they were, managed to stay patient and understanding all the time, I’ll never understand. I was only there a week and I’d had enough. I wanted to shout “shut up!” At them. If you think you would be more patient, try it out, have someone call out day and night at random times.

Nursing homes are probably the most unsuitable place for me to stay, but the only place adult social care will fund. I need nursing care, so a normal care home is unsuitable. There is only one nursing type home that is suitable in this area and it doesn’t routinely take adult social care rates. I am left with standard nursing homes, these are mainly filled with elderly patients with dementia. As you can imagine I don’t have a lot in common with the other residents. Mind you it does make me a novelty with the carers. At first I was complimented by the fact they thought my skin was so good, until I realised they were comparing it to other residents who were at least in their 80s.

Most of my time is spent on my own, either in my room, or in the garden. There is no one I can socialise with. My day is therefore punctuated by visits from carers. Two in the morning to wash me, one bringing breakfast, one at lunch, one at tea, two getting me ready for bed. In between I watch Netflix on my iPad.

I normally cause an issue in most nursing homes. I need lots of power sockets for all my electronics and they often have only one by the beds so I now have a multi USB socket. My iPad, smart watch, phone, Alexa plus wheelchair and wheelchair ripple cushion all need plugging in, plus I have an electric toothbrush. My bed side table ends up resembling an electronic work table full of wires and gadgets. I do like gadgets, but I also find them extremely useful in my limited condition. A smart watch is brilliant when you need to easily check messages. The Alexa is an essential disability aid. I can call for help, even in a collapse, or check any number of things while waiting to come round. It acts as an entertainment centre, but it also connects to all my smart home stuff. So at home I can control heating, lights and cameras on external doors.

One nursing home I stayed at I ended up helping a visiting lady from head office sort out the wi-fi setup. I’d been having problems connecting, so I did some trouble shooting from my bed. When she arrived, I found they had sent a none technical person, so I explained the problem and how to fix it. I have worked with computers and networking for years before I was ill, so it was simple for me. It’s always good when I can achieve something helpful even in my limitations.

Let me describe a typical day in a nursing home. I wake around 4am or 5am, that’s my usual time. Ring the call bell. You would not believe the image on many call bells. They have 1960s style female nurses in mini skirts, sexist or what? Someone looking totally different to the promised image turns up. Then the joys and embarrassment of using a bedpan begin. I won’t describe it in detail. But just think about what it would be like having two people, they have to call a second, help you onto a bedpan or commode then off it and wipe your bottom. Think for a moment about the procedure that would be involved in that. In some nursing homes I have to use a bed pan on the bed with all the balance issues that involves, in others I can be hoist onto a commode. Yes it’s all as unpleasant as it sounds. For me the worst bit is that when you ring the bell first time one set of carers come to help, then when you are finished and ring again you don’t know who will walk in the door. Will it be the same people or two complete strangers you’ve not met yet. Night staff tend to be bank staff, so you don’t really get to know them all. I don’t enjoy it at all, would you?

After this I ask for a first breakfast. I am like Winnie the Pooh, I have first and second breakfast. I’m probably full of fluff too as I always have fluff in my belly button. My first is coffee and a slice of toast or bowl of porridge. I then watch Netflix till the two carers arrive to get me ready for the day. Typically that varies between 7:30-9am. When you are on respite you are last on the priority list.

I covered what it’s like to be washed and dressed by two people in another post. After being dressed I either get hoisted into my wheelchair or stay in bed. It depends how well I feel and what’s happening. I can only manage a certain amount of time in my wheelchair, even now it has a battery powered ripple cushion. We will assume this is a day I have got hoisted into my chair.

Second breakfast comes next, again in my room. Then I would explore the less used rooms or go into the garden, weather permitting. I avoid the more used rooms as I have found from experience that the other residents look puzzled at me. I put the battery powered Alexa on my lap tray so I can call for help if needed to the one I have left with the office. My lap tray is a Trabasac which fits by straps to my wheelchair and acts as a beanbag tray and a bag for my wallet, iPad and phone. As I mentioned in a previous post, you won’t be surprised that Trabasac sell trays for pushchairs too.

Normally I request to be hoisted back into bed in time for lunch. In most nursing homes once you ring the bell there’s a wait. How long depends when you ring. If you ring during the morning rush, when everyone is being washed and dressed, it’s a very long wait. If you ring at one of the handovers between shifts, again the wait can be long. At other times it is normally really fast. At least it is for me. I’ve noticed that some residents don’t get answered quite as fast. But, those same residents seem to press the bell an awful lot, maybe that’s why.

Lunch, like all meals in a nursing home is OK, about the quality of a café or a low star restaurant. The meals are small, which suits me as I have a small appetite. I have to have someone with me when I eat. This is because if I have a collapse while eating I could choke. It has happened at home and Mary removed the food from my mouth. At home Mary or my carer are always a few feet away, so in a nursing home a carer has to stay near me too.

The afternoon is a repeat of the morning. I sometimes have visitors, which is great. My day generally is punctuated by collapses. I keep a running record of them, looking for patterns. I have between 2 and 6 per day up to 20 minutes each one. It’s the quiet days where I have 2. Due to the stress, noise and disturbance of being in a nursing home I generally have 6 a day while staying there.

Tea time, again a carer has to sit with me. Nursing homes give you a choice of food for the next day and I do like that choice. The thing about being in bed or a wheelchair all the time is that food becomes a big focus of your day. You might think ‘food is a focus for me.’ but this is different, I mean it occupies a large part of the day because there are not a lot of other things happening. There is a tea and coffee trolley normally morning and afternoon, but I can ring for drinks anytime. I tend to find that once the ladies doing the tea trolley find I have my mental faculties, they spend more time in my room chatting. One of the younger carers kept appearing in my room to chat. I thought she must be on a break each time until one time a supervisor came in and said “There you are, we’ve been looking for you, you’re meant to be in room 6.” I would like to claim it was my witty repartee, amazing good looks or animal magnetism that kept drawing her to my room. But, I know it was two things, a desire to escape working and the novelty of a resident able to chat normally. She is a very nice young lady but just not suited for care and she no longer works in it.

The time I get ready for bed is up to me but if I time it wrong and hit a busy moment or handover I can have a long wait. So, I normally get ready early, before 8pm. Getting ready for bed is not just pyjamas, again with two people, but also tooth brushing and preparing my CPAP. I have sleep apnoea on top of everything else. A CPAP is a device that feeds pressurised air down your nose and throat to keep your airway open all night. This prevents the episodes where I stop breathing. Sleep apnoea is where you stop breathing many times an hour during the night. Your body eventually kicks in with a gasp and starts again. But it causes an oxygen drop and heart rate race each time. It’s dangerous and disturbs your sleep. Without a CPAP machine people fall asleep at the wheel of cars or lorries and it can cause all sorts of health problems.

Once the carers have got me ready for bed at 8pm I don’t actually go to sleep till about 10pm. For me in a nursing home I don’t get a very good nights sleep. When I first stayed there I used to get woken every 2 hours by nurses checking on me. Some actually asking “are you OK?” They had gone before I could respond “I was till you woke me.” It took a while till I realised the reason. Because I have bed sides and a CPAP the night staff automatically see me as a risk that needs checking on. The problem with being in a nursing home full of dementia patients is that even when I first realised that and told them not to check on me. I got the response “yes, that’s fine.” In a pat you over the head, patronising way. They thought I had dementia because they didn’t read my care notes, so they ignored my request, thinking I didn’t know what I was saying. I had to have the day staff cover it at hand over to ensure I wasn’t disturbed. Even then one over zealous night nurse still popped her head in quietly one night, forgetting the door is not quiet.

Overall I do not enjoy nursing homes for respite and would choose to stay at home with 24/7 carers. I don’t get much sleep, I find it stressful and difficult. I certainly don’t enjoy using a bedpan or commode with a constantly changing audience. It would cost adult social care nearly the same to cover 24/7 at home care through some agencies, but the system doesn’t allow it. Less money is available if I am at home than if I am in a nursing home. It’s one of many peculiarities of the social care system.

One last comment on Nursing homes. I don’t enjoy staying in them because they are unsuitable for where I am mentally and not setup for my physical needs. But, everything I have seen while staying at different ones tells me they are safe and pleasant places to stay. The staff are incredibly patient in difficult circumstances. The food better than I expected. The environment pleasant, especially the gardens. I don’t fear a time when I might need to be in a nursing home full time. It just doesn’t suit respite in my current situation.

One of the nursing homes I have stayed in.

Body mapping

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

Everything happens at once

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

My Amazing Wheelchair

I am fortunate to live in a country and a time with the NHS. It is a brilliant institution. Any failings are more to do with political decisions on funding. I can’t fault the wonderful caring staff.

My wheelchair (shown in the photo) a Quickie Salsa M2, is supplied by the NHS, it took a long time to get, but it is excellent. It fully supports me and enables me to recline.

Quickie Salsa M2
Mechanism under the chair

Let me describe its brilliant functions:

My wheelchair has two electric reclining functions, operable via the front or rear (attendant) controller. The backrest can tilt and the whole chair can tip. When both are at their maximum the chair is as seen in the photo, it is almost flat. Due to clever design it is in no danger of tipping over and the speed automatically drops to a very slow crawl.

The legs are also electric they can raise separately or together and go straight up. The photo shows them up.

Another great feature on this chair are the raising arms. They flip up out of the way. This means that in a situation without a hoist, the wheelchair can be lined up to a bed, profiled to match, a banana board (plastic board used to transfer people) used to transfer me with assistance from others. Or the arms can just be moved away to get closer to a table.

The arms also have extra wide indented rubber tops so that my arms can sit in them. This is to help them stay in place if I have a collapse in the chair.

Note tiny gap next to door, between chair and bed wheelchair has accessed

The seat is high backed and has a wrap around back for support. The seat cushion is a battery powered ripple cushion that I added with money from donations. The NHS will only supply mains powered ripple cushions for wheelchairs or ordinary pressure cushions.

Here you can see the Alerta ripple cushion & the padded cushions Mary added to headrest

The main seat belt is a car type lap belt, then it has additional shoulder straps to keep me in place in a collapse. I have added a neck brace because my neck also loses function and the neck brace holds my head securely against the head rest. The combination of seating and straps hold me securely even on a bumpy van journey, apart from my arms. Mary has recently made arm restraints for these.

The NHS no longer provide lighting for wheelchairs if you live in a town. Even though we live down a dark alley. So we have added bicycle lights, an led strip light (also for fun, this one) and strips of reflective tape. Best to be seen at night.

The six wheels on this wheelchair keep it secure even over rough ground. At worst the front two leap up, four always stay firmly on the ground. The articulating suspension and springs are not perfect (its still bumpy) but they are an improvement on my previous wheelchair. I notice the biggest improvement on uneven ground. Where before, I would have skidded left or right or just lost all traction, the Quickie Salsa M2 seems to cope and keep going. I have managed to get through some pretty tough ground conditions, gravel, sand, mud, leaves, very uneven ground and potholes in the path.

You will see on the photo I have added side bags for my bits, a drink holder (hidden the other side) and a rear bag (hidden behind) that holds my waterproofs. Waterproofs are the one thing I have struggled to get for this wheelchair. I cannot find one that fits such a big chair from head to foot. So I have a separate head and leg covering.

Waterproof covering, in two pieces.

Mary has also made me removable cushions for the arm rests and head rest.

All in all I am really pleased to have such an incredible chair.

(Also see my blogs “Climb every mountain.” and “Keep on rolling“)

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I can go places I previously couldn’t

The cot sides

I didn’t just wake up one day and find myself in a hospital bed with cot sides and carers. It was a gradual process of decline over years. My muscles used to lose function without much warning, from my viewpoint without any. It was when I could still walk and drive that it first happened. I was driving on a motorway! I need to tell that story separately. That incident stopped me driving. Then months later a collapse happened while I was walking, I just crumpled like a rag doll onto the concrete path, then another time down behind a toilet and even into the bath! That stopped me having baths. Gradually my ability to walk and safety factors meant I was limited by the doctor and nurse first to a reclining chair then to a hospital bed.

Then came the day that led to bed sides, they call them cot sides. By this time, I had daily carers as my general ability to function had declined. Not all of them were helpful. At this point I only had a diagnosis of ME, which is really a non-diagnosis. It means they have ruled other things out. Lots of people either have that diagnosis or know people with it. As I now know ME is the least of my problems, it’s no surprise I never found anyone with the same symptoms.

One day a particularly unhelpful carer came, whose husband had a diagnosis of ME, he’d actually been exposed to organophosphates, which gave him the ME type symptoms. She decided I needed encouraging to get well, a kick up the pants, as that had worked for him. So, she sat my bed up to nearly 90 degrees, flung a wet flannel on my chest said, “you start washing your face and I’ll get a bowl of water for the rest of you.” I objected, warning her my muscles were very weak and I had sudden collapses. If she’d read my care plan, she would have known all of that.

By the time she returned I had collapsed, I was head first out of bed all my weight on my head pressing on the edge of a wooden tray between my bed and the wall. Only the narrow gap between my bed and the wall stopped me falling further. I was in agony and calling for help. But the collapses immobilise my main muscles, I am effectively paralysed in that condition. No amount of pain and discomfort, danger or fear can overcome it, time is the only thing that changes it. They can last from 10 to 30 minutes.

The carer went into panic mode, she leapt onto the bed, no mean feat for a large lady. Still totally unaware of my limitations she hauled me up a little and I slumped back harder onto the tray edge. Realising I was too heavy for her to manage on her own, she rushed out to a neighbouring house where her supervisor was giving care to a neighbour. Returning after what felt like an eternity to me, I now had two large ladies leap onto my bed and heave me up. Feeling they had succeeded they let go, I slumped onto one lady’s large bosom. They lifted me again, I slumped onto the other ladys’ bosom. I don’t think they were quick learners because this happened a few times before they understood I was like a rag doll and they lay me down. They were soft pillows, but my head was at some awkward angles.

I have often wished a camera was filming the whole event, it must have looked hilarious. Their faces must have been a picture. I had no idea what was happening until I felt my head cushioned on each soft breast. Even though it’s funny in hind sight, it was not funny at the time. Being like a rag doll, my muscles and joints were easily pulled in ways they were not meant to go. I was so relieved when they eventually laid me down flat.

Two things came of that day. I refused to have that carer back and cot sides were fitted to my bed. I still have those even though I have learnt to be cautious and my current carers know me well. Sometimes safety features come after we have been hurt. This carer was an exception. I have only had one other who so completely ignored my care plan and caused me pain and difficulty in all the many years I have received care. Carers are mainly really careful and helpful.

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Cot sides on my bed

An odd request from Amazon

Wouldn’t it be great to have a shower again? That was the simple thought which started it all off. I can’t have a shower or bath at home, so my carers must give me a bed bath every day. The idea of a shower kept growing on me, water running down my hair, the little I have left. The luxury of water flowing over my body. The more I thought about it the more the desire to make it happen grew.

We had booked our first respite of 2019 in a convalescent hotel in Dawlish. We’ve been there before, and it works well. They have two rooms that have profiling beds, wet rooms and are on the ground floor. All rooms have call bells and a nurse/manager is on 24/7 call. Mary must do all my personal care, which isn’t a break for her, but all food is made, which is.

I decided that a wheeled shower chair with lifting arms could be used to enable me to have the occasional shower, while we were there. So, I ordered a folding one from Amazon to be delivered there. The plan being to bring it back on the train. The assistance people on the trains are brilliant.

Day one, we arrived, and the shower chair was waiting. I was desperate to try it out, so that evening I did. I need to explain something about those of us who are limited in mobility. We are at high risk of pressure sores. Our skin is more delicate than someone who is mobile. Then you need to know that this particular shower chair was badly designed. It had a hard-plastic seat and four holes in a triangle shape about 10” wide by 2” deep. The holes were a little bigger than a 5p piece.

I had a lovely shower, not thinking anything of this hard seat. Not knowing the information which the manufacturer later told me that I should have put a soft cover on it. Would be helpful to include instructions if that is a necessary thing to do. Information is so helpful, especially if given when needed rather than after.

Lying on the bed after the shower, being dried by Mary, she gave a cry of surprise. Two red circles had appeared on my bottom, exactly were the outer two holes had been. The inner two lined up with that part of my bottom which didn’t make contact with the seat. My skin had been sucked into the holes and bruised by the experience. Mary called the nurse and she recommended I stay off my bottom. The upshot being the next three days I spent most of the day in bed on my side.

I contacted Amazon and they wanted photos of the chair and my bottom showing the injury, an odd request but I sent them anyway. Two days later I was speaking to a very nice lady who had studied all the photos in detail. It was an absurd situation, here I was chatting to a complete stranger, not even a medic, about my bottom.

She said, “I studied the photos and I see exactly what you mean.”

What did she mean? The mind boggled. In what other situation would that happen? I don’t know how I kept a straight face. I am just hoping I don’t see my bottom on a lightening deal or illustrating a review for this shower chair.

This is a photo of the seat of the shower chair showing the four small holes. They are a little bigger than a 5p piece.

Shall we get in the bath?

“OK, shall we get in the bath now.” This was said by one of the two young ladies who were preparing my bath at a nursing home.

“Is there room for all three of us?” I asked innocently.

I had noticed over the previous few days that “we” was used by carers a lot. I guess it was to be encouraging or they just hadn’t thought of it. But once I zoned in on it I realised that carers were asking to join me in the bath, in the shower and even in bed “shall we get into bed now?”. They were wanting to eat my food, wear my clothes, get into the sling before me and even sit in my wheelchair! “Shall we get into the wheelchair?” I suggested they might be heavy on my knee.

When I got home from the nursing home, I was so focused on it I noticed my carers at home similarly wanted to eat my lunch “shall we eat now?” and wear my clothes “what shall we wear?”. Of course, once I pointed it out, they started to catch themselves saying it. 

The one that inspired the name of my site is, “shall we get dressed now?” This is probably the most common and one I have to bite my tongue not to respond to the most. Having pointed it out, one of my regular carers has become so aware of this that she will occasionally joke “We! Are going to get dressed now.” Waiting for my eyebrows to raise and then we both have a good laugh.

Then again it can be two way. I’ve become much more aware of saying to Mary on her return, “We’ve tidied up.” Taking credit for the carers work. 

Language is such a funny thing; we say things without meaning to and of course it’s so easy to distort meaning. But it’s also important to be aware of what we are saying and why.

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This is the type of Bath I am talking about

Hello world!

“Hello world!” I was sitting naked on a commode with a carer either side of me. The bathroom was so tiny, and the ladies were not small, so they left the door open, as was the hall door into what was acting as my bedroom but was actually our front room. Our bungalow had been cleverly designed to line up the bathroom door, hall door, front hall door and front outer door. A brilliantly designed tunnel effect from bathroom to outside. Mary, my wife opened the front door and inner hall door as she came in, they were close to each other.

Picture the scene, a clear line of view from bathroom to outside street. If anyone had been passing, which fortunately they weren’t, I could have waved. I could probably have had a chat. Hence my exclamation “Hello world!” The two carers slowly looked at each other and me in shock. They were new and had not yet met my wife. Assuming she was a stranger they looked slightly confused at each other for a moment. Then they looked again at Mary. Eventually they covered my embarrassment just in time for Mary to introduce herself. By this time, I had requested Mary close at least one of the numerous doors leading to outside. Oh, the joys of being cared for. Oh, the joys of being unable to get up and do things yourself.

I used to joke that I had the best-known bottom in Somerset, because I saw so many carers. On that my posterior had the potential to become even better know.

This happened back in 2012 when I was still able to stand for a transfer and sit on a commode for washing, these days I must be washed lying down in bed and have to be hoisted from the bed to a chair or wheelchair. We have a high backed, reclining commode/shower chair, but no wet room that I can access. Our current situation saves a repeat of that embarrassing situation but has its own limitations.

My current lounge/bedroom has a patio door to our enclosed garden, that I always saw as private until recently. I never asked my carers to draw the curtains as our garden has high walls and a locked gate. Then a few days on the trot the gate was accidentally left unlocked and two different delivery men decided our back garden was the obvious way to deliver a parcel.

One of the occasions I was lying in bed having just been undressed awaiting a new lot of clothes, when a face appeared at the window trying to peer in and knocking on the glass. The other time I was just lying in bed watching TV when I saw a delivery guy wondering around our garden. You won’t be surprised I now follow the advice of one of my carers who had always suggested I have the curtains closed. Having told her there was no need, I now sheepishly admitted she was right.

While on the topic of embarrassment. I’ve been in one nursing home where they were taking me down the corridor to a shower in a wheely commode. Think about what a commode has on its seat, a big hole where your bottom is. So your bottom hangs through it. I was naked ready for a shower, but covered on top for decency. As we wheeled along the corridor I thought ‘This is very draughty around my rear.’ Once I realised why, I was quite glad we didn’t pass crowds of people.

I want to finish by saying carers try very hard to respect my dignity and privacy. They do cover me up and make sure doors are shut. I’ve had carers for years and there are bound to be the odd slip ups. I only mentioned these incidents because they are funny, and I can look back on them and laugh.

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Our bungalow (2014) in Creech showing ramp to front door. Window on left had my bed behind it. Bathroom in line with front door.
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