Show Care for Carers

This is national ‘Carers Week’, when we are thinking about the wide range of carers that there are across the country, including those elderly couples who are looking after one another, offspring who care for their parents and those of us who have ‘children’ with special needs. I have read that the UK’s unpaid carers are seven times lonelier than the general public, which is a really sad statistic. I know when Mum was caring for my father at home , he had vascular dementia, her world shrank as she was tied to home, responding only to his needs. Finally, she got a network of paid carers in to give her some respite and  a few opportunities to go out and have a life of her own. She used to say that those carers were her window on the world. Full time time carers have my total admiration and need to be given as many opportunities as possible to be relieved of those caring duties once in a while, to give them a rest and also another perspective on life.

My situation is very different however , as Joshua goes to school during the day and I work four days a week, so I am not a full time carer – although of course, I always care. So I am fortunate to have opportunities to meet other people and to focus of something that is more predictable and something that I am good at during the day, so that I am more refreshed when I get home from work and Joshua returns from school. I want to spend time with Joshua when I get home, whereas caring 24/7 is exhausting and draining. I have the help and support of Joshua’s Dad and Yorkshire Grandma too, as well as monthly respite weekends, so caring is not my sole responsibility, so I am very fortunate in many ways. I do not suffer from loneliness, as I have friends, family, colleagues and clients even, who I confide in and social media, for me, gives me access to support from both friends and sympathetic strangers.

61% of carers have suffered from a physical injury due to their caring role. Both my husband and I have suffered with back pain, he damaged his knees and I tore my Achilles due to pushing Joshua in his wheelchair, so we are well aware of the physical risks associated with caring. The harsh reality is that as our bodies are getting older and weaker – we are both in our 50’s now – Joshua is becoming heavier and stronger. When he was younger , after a seizure, it was possible to simply scoop him up and lay him somewhere safe and comfortable. But now at over 9 stone, this is impossible, so I have adapted and now I make him comfortable on the floor where he lands, by cushioning his head, and we do not move until Joshua is able to stand up himself. So if that means we are both on the floor in the pet food aisle at Tesco, as we were recently, then so be it.

In this week, spare a thought for carers in all kinds of situations and show them some care and support.

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Back to Normal?

Today I am leaving home early to go to pick up my sister and together, we are heading back to Mum’s home town for another day of jobs to be done : we are meeting a potential caterer at the church this morning, so that they can view the kitchen to assess what they would bring with them. It will be the first time that we have been in ‘Mum’s church’ since she died so that will feel odd and we might even see some friends of Mum’s there, she used to go down there for coffee every weekday. But it will be helpful to confront the space before the funeral next week, as it will be hard enough next Thursday.

We have an appointment with the church minister this afternoon, but she will be coming to the house to see us. We will discuss the bones of the funeral service with her : the readings, the eulogies, the hymns etc. We know what we want to happen, but might need some help with the order and some advice on the length of the service perhaps. She announced the date and time at church on Sunday, so the congregation will all know by now. There was a music concert in church at the weekend, by an instrumental group that Mum was very fond of; we have heard from three people now that they dedicated their final piece of music – based upon the hymn ‘How Great thou Art’ – to Mum’s memory. I found that very moving, even though we did not attend to hear it for ourselves. Fortunately, the violinist from that group will be playing at the funeral, so that is a lovely link that Mum would have approved of.

While we are over, we will also call in at the funeral director to sign some paperwork and we will review old family photographs to use in the order of service. So this promises to be a full on, emotional day. But then, they all have been since Mum died even when we have been quietly at home, trying to relax as we are constantly being advised to do.

Joshua returned to school yesterday and I went to the office, trying to be ‘normal’ , when nothing feels the same any more. I was able to do quite a lot at work in the morning, but then I began to flag later, so I came home mid afternoon. I planned a brief nap before Joshua got back from school but that did not happen, with emails I chose to write and phone calls that I received. Having stayed dry-eyed and calm in the office, I was more emotional at home, so much so that I had tears in my eyes still when Joshua arrived home, so I turned on the smiles and loud, excited voice for his benefit and he responded happily in the way that I knew he would. There was no time to wallow once he was home: he wanted his boots and splints removing, I gave him his medication in a chocolate mousse, he told me that he wanted to watch ‘Robbie’ on DVD and then I got his tea on. On the plus side, I had hugs and kisses from him, but much less endearing was his door slamming and his bashing of the telephone on the  mirror in the hall, both to demand attention. Once he had eaten,he dragged me upstairs and into the bathroom, as he wanted an early bath, so we were both in our PJs by the time my husband got home from work.

Joshua was up and down stairs through the evening but he settled into bed around 9 pm , but he was back downstairs later as he had some seizure activity, as he was still gently fitting by the time he reached us. I took him back to bed and lay next to him to observe his seizures, even though he smacked me at first, I persisted and sang to him in the darkness. I fell asleep next to him, so I got my nap, just  7 hours later than I had planned, and when I awoke, Joshua was snoring next to me. Joshua helpfully takes the focus away from what I am feeling , as he needs such practical care. I was asked yesterday if Joshua would be going to his Granny’s funeral, and I replied quickly that of course he would : he loved his Granny and she adored him, so there is nowhere else that he should be. He is unlikely to conform during either service, but we will be surrounded by friends and family who either know him or who have heard Mum talk about him, so his outbursts  will be excused I am sure and he may even prove to be a useful diversion on the day.

Out of Control

I was at hospital with Mum last Tuesday afternoon, Wednesday evening, Thursday afternoon and Friday morning, so I was able to see, live, exactly how she was and what the  doctors and nurses were doing and saying to her. Now that I have come home,  I have lost that knowledge and I am reliant on Mum’s sparse texts, any emails if she writes and sends them and updates from other visitors during visiting times and I found that difficult to handle, as I wanted more than that. My Aunt was not able to visit until 2 pm and so the morning was very quiet in terms of news, other than Mum’s text condemning the porridge compared to her previous hospital! It seemed that Mum lost her Wi-Fi connection and her hands were in spasm, so typing was not going to be easy in any case. So I had to rely on my Aunt for news and that could only come in the afternoon.

So while it was all quiet from hospital, I had to keep myself busy to prevent myself from worrying too much. So at 10 am, I took Joshua with me to Tesco, which was a perfect distraction, as that is a full time job in itself. All of the Disabled spaces in the car park were full so we had to walk from further away, but he ran towards the trolleys, keen to get started. I found that I had left my shopping list behind, so I had to try and remember what I had written on it, while trying to steer Joshua’s trolley to avoid obstacles. I think he only bumped into one lady, so that was pretty successful and she smiled, kindly. We gathered what he would allow and headed for the checkout. Joshua usually sits on the seats behind the tills, glad of a rest and watches me unload then pack and pay for the shopping. But he only had a quick rest and then he came to give me a hug and kiss – the till operator was impressed by how loving he was and I agreed with her, but added that she could not see the kick to the shins and ankles that I had also been receiving, so I warned her not to be too fooled by him.

We were home for around an hour, before we headed out to our nearest market town, with the wheelchair this time, as we had some jobs to do. Joshua was not keen to remain in his wheelchair in the jewellers, where I was getting a watch strap adjusted. I let him stand up out of his chair and so he began roaming around the store, creating mischief and waving at customers, then giving me little kicks to let me know that he was fed up of waiting. An autistic man fired questions at us, when he overheard Joshua’s name : what school did he go to? when was he born? Then he told me that Joshua was 18 and was born on a Thursday! I knew that he was actually born on a Monday, as we went in to be induced on Sunday night, but I did not like to argue with this young man who clearly thought that he had a special talent, so I left the store giggling to myself. After the first shop, Joshua required to eat lunch so we had two failed attempts at places that were already too full and on the third attempt we found a cafe that suited us well : we each found something we liked to eat , it was spacious enough to bring the wheelchair in out of the rain and there were both staff and customers who were prepared to wave back to Joshua. We enjoyed our tasty lunch then headed back outside in the rain, Joshua being more subdued now that he was full.

So Joshua did a great job of distracting me and by the time we got back home, there were Whats App updates about Mum. I found it hard to let go today, after being so involved and hands on, so much so that I am already planning when I can return to visit again.

Let them eat Cake

It is the second parent coffee morning of the year on Friday and so last night, after Joshua was in bed I made some caramel shortbread ready for the event, so that it was not all last minute and I have a coffee cake baking in the oven now as I write. I was delighted to receive a message yesterday that one of the Mums who comes most months, will be making and bringing a lemon drizzle cake along to share. We never know how many parents will attend, but I have a fear of having more people than cake so I tend to over-cater and then give it away within school, work or  even my hairdresser afterwards.

Due to  the risk of allergies and the unknown ingredients of home-baking, the school Governing Body agreed that homemade cakes should not be allowed any more in class,for the pupils. So Joshua will be having a his first shop-bought birthday cake in school for his 18th next week. I understand the reasons why this policy has been introduced and of course, I would not want to hurt anyone through my baking, but it  still upset me and I examined why that was:

I bake to make people happy, it usually brings a smile to faces.  I also use my baking to show people that I care: if someone is low, poorly or having a bad time, I will often turn up with surprise shortbread or chocolate brownies to try to cheer them up or to simply brighten their day. I use baking to thank people who have been kind to Joshua , such as the staff at respite, who usually find a tin of treats tucked into his overnight bag. I bake as bribery too – for orthotics and school nurses, to make sure that they are kind to , or particularly remember, my son.

So being told that I could not bake for children , who might not be able to judge what they should or should not be eating, for the good of their health, took away one of my ‘caring tools’ and so it did not feel good, even though my head knew it was sensible. The reality is probably that Joshua’s peers in sixth form, like cake , and they probably do not actually care if I made it at 5am in my kitchen at home, or if I bought it from the local supermarket, they will enjoy the sweet treat just the same.

But the new ruling does not apply to staff or parents, who it is assumed, have the capacity to ask what is in a recipe and can decide for themselves whether or not they should eat it. So I  was encouraged to continue to bake for the coffee mornings and for Governor meetings, so it is not a blanket ban on home-baking and so I will continue to do so, while Joshua still attends this school. I have already started to make noises amongst the coffee morning attendees, that they need to start recruiting a new baker,so that somebody else can take over my role next year. They have plenty of notice but so far there are no volunteers!

Duvet Day

When you take your child, or teenager, with special needs on holiday then his needs and preferences still come first. Yesterday Joshua was full of cold and so we decided to let him have a day at home, in the warm. He spent it wisely alternating between his bed, the settee and he had two warm baths too, but by the end of the day he had progressed to the coughing stage of his cold. A ‘normal’ teenager would be left at home alone, at least for some of the day, as he would be either dozing and when he was awake, he would probably read, listen to music or watch TV, but he would be self-sufficient. Joshua needed to be taken care of all day :  he needed reminding to drink plentynad to be dosed up with Calpol and when he was awake he needed to be supervised on the stairs and he needed the DVD or iPad turning on for him. Nursing a poorly Joshua is a full time occupation, except when he is asleep.

While I was fulfilling this caring role, my husband went out alone to walk the dogs and to buy everything on my shopping list.Normally we would all do those things together, as a family. It did mean that the dogs could have a hillier, longer walk and at a faster pace than we would manage together, so they will have been happy with the arrangement. But I am hopeful that we will all get out and about today again, so long as he is wrapped up warm, as it must get cold sitting still in a wheelchair. Joshua’s hands and feet are often cold to touch, as his circulation must be compromised. It is often said that a hat will keep the heat in, but Joshua has never tolerated wearing a bobble hat on his head, it comes off immediately and is usually thrown into a nearby puddle! So I tie him into his hoodie so that his ears do not get cold and it cannot be removed.

We have an outing planned to a local market today, with lunch out, so I hope that Joshua is well enough to oblige so that we can all go out together. Yesterday was an example of how having special needs in the family, can divide a family. In our case, with Joshua being an only-child, it means that often one parent is on their own. My husband has developed Joshua’s cold and so he feels the need to be looked after too, but he knows that his needs will always come in second place to Joshua’s. I am hoping that my sore throat does not develop into anything more, as I am not sure which of these two men will take care of me when I need my bath running or will make me a hot lemon and honey concoction!