59to60

My journey from 59 to ………

Archive for the tag “Carer”

5 months on ……

….. since I last posted. And how life has changed, yet again!

The beginning of this year was extremely difficult. I was finding my role as a carer very hard and could feel myself slipping into depression.

I did change my behaviour and, instead of bottling it all up and pretending that as superwoman I can deal with everything, my usual tactic, I asked for help. I asked the GP and agreed that I now wanted counselling, not tablets, as I needed to be able to talk through all my feelings after 28 years of caring. She gave me a number to call to refer myself which I did.

I then had a telephone assessment where I made it clear that I needed 1:1 support as in a group I’d just try to solve everybody else’s problems and not address my own. The assessor agreed and said she’d refer me for 1:1 but recommended that, whilst I was waiting I should go to the 6 week CBT group sessions.

I did this, starting on the 11th February. I’ve always thought of myself as a positive person and this course showed me I was right!

I am extremely good at looking for the positives in any situation (let’s face it, I’ve had to be!!!) and this course did not help me in any way, although I know plenty of people that it would!

It is now June and I am still waiting to hear about any 1:1 help. :-/

Ray’s been very depressed, his diabetes was out of control (I now know that his glucose meter can say Hi & Lo not just numbers!) The nurse at the surgery was great and referred Ray to the specialist diabetes nurse, the falls clinic, the service that provides aids and told me to contact Social Services.

The specialist nurse was fantastic. She could  see I was struggling (I did have a bit of a melt down in her office0  and so was Ray. She wanted to get his blood levels measured throughout the day for a week and FOR THE VERY FIRST TIME IN 28 YEARS did not just assume that I would stay indoors to do lunch time readings every day, she arranged for the district nurses to come in to do them.

I cannot begin to explain how much that meant to me. Finally somebody was giving me some practical support and encouraging me to have my own life, not just to be an unpaid carer. We got Ray to admit to being depressed and he agreed a course of anti depressants may help, she said she would contact our GP. His insulin doses were adjusted a bit which helped the diabetes but his moods remained the same and life was very difficult.

Somebody came from the falls clinic, took lots of notes and tried to get Ray to do a few exercises to help strengthen his muscles and improve his walking. Ray found it difficult to understand what was wanted and some of the exercises were completely beyond his ability. When I told the man that I did not think Ray would do the seated exercises regularly on his own he said he was going to discharge him, well that was a lot of help! He also said something about referring him for a support shoe but, to be honest, by this point I was so pissed off again I honestly don’t know if he was going to do it or if I was supposed to. Still, we haven’t heard any more about that either! No practical help was offered on how to stop the falls or how I should get him up!!!

We never heard anything from the aids people and, although Social Services said I would get a Carer’s Assessment nothing has happened.

Eventually I blew!

I had had enough. I’d been warning Ray for some time that I could not take this any more, that I had done my bit and that I was sick of it. I even told him to decide which of his two sisters or his mother he wanted to go and live with!

Eventually I blew, I told him that this was MY home, that I had paid for everything in it and provided everything for him and I needed to do stuff for me. He had an ultimatum, either:

  1. We got a dog, or
  2. He went in a home and I got a dog

Guess what?????

On the very first day of looking I found Donut, an RSPCA staffy cross, and three days later he arrived, complete with the cone of shame!

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This dog has changed our lives. Ray was adamantly against having a dog, and now he adores him! His depression has lifted, he’s started laughing again and his health and mobility have improved. He finally has an interest in something!

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And me? Wow, what a difference! I don’t even mind being at home now!

Well that covers the most important aspects of the last five months but there are other things too 🙂

Looking back at the targets I set myself, there will be no problem covering 2016 km in 2016 although training has suffered and I’m nowhere near 3 sessions a week but that’s for positive reasons 🙂 I aimed to be leaner and I have lost a stone, feel better for it and plan to continue!

I qualified as a Lowland Search and Rescue technician and I’ve been out on a number of searches. As our first aid requirement is the same as for First Responders I decided I might as well do that too so now if you put in a 999 call in Wickford there is a possibility you may get me as well as an ambulance etc!

Voluntary work can be so much fun!!!!!!

 

I love the NHS!

On Friday I had a steroid injection in my knee (for arthritis / Bakers cyst) at Brentwood Community Hospital. 

Needles don’t bother me and I was quite relaxed about the whole thing. Linda, the physio, and I share the same sense of humour and attitude to life! 

I caught a glimpse of the needle which was quite big, but she was so efficient that I hardly felt a thing. 

  
After sitting in the waiting room for 10 minutes to make sure there were no reactions I left, with her warning to take things easy ringing in my ears. 

Now I was full of good intentions and decided I definitely wouldn’t go to the gym on Saturday, so I went to Bluewater. 

Driving back I was hit by a pain that I could only describe as excruciating. It was horrendous. I was trying to breathe through it, relax into it, talk through it, anything to get me home. 

I rang Ray, he finally answered, & warned him to have the front door open. I got home, raced in and picked up the phone to dial 111. 

Picture the scene, I’m doubled up in pain trying to answer the questions from the person on the phone whilst Ray is telling me to get Spin CDs up on the computer for him!!!!!! 

My answers were such that led to me being put through to a clinician who said I should go to the out of hours GP (an appointment was made for 20:20 and to take a urine sample with me) and that I could take paracetamol and ibuprofen. 

Got Ray fed, tucked him in, prepared his injections and tablets for the next day and, as I could not settle, set off early. 

Stopped en route to but him some biscuits and me some ibuprofen then got to the out of hours GP based at Basildon Hospital. I knew where that was as I’d taken Ray there a couple of years ago. 

Doctor was very pleasant, asked lots of questions then tested my sample. Now I drink loads of water and I’d been surprised at how dark it was, thought I must have been dehydrated for some reason for the previous few days but no, turned out it was blood :-/

The GP spoke to the surgeons and sent me over to A&E. Staff there were helpful but I had to wait quite a long time until I was seen. I was walking round in circles because it hurt less if I was moving. I was reaching the point where I was going to have to call for pain relief when my name was called and I went through. 

(I have no complaints about the wait, I should have probably told reception how bad it was but there were lots of other very ill people there, staff were doing their best and it is just not my way!)

Memories after that become a bit hazy. I remember seeing a doctor and saying the pain level was 8/9 (again not like me) and being given paracetamol and a diclofenic suppository! I was dubious about thus but happy to try anything at that point. It was magic! I took it just before going to X-ray for a scan and, by the time I arrived there, the pain had eased. 

I didn’t find out until later that I could only have one of these a day, I would never have thought I could look forward to having anything shoved up my bottom!

The scan confirmed all the doctors diagnoses, a kidney stone! 2.7mm in the uretha. 

Back to A&E and the really kind nurse to wait to be admitted. 

I was so relieved to be safe in the hospital and getting help with the pain that I didn’t care how long that took. 

At some point in the night the nurse took me to the Surgical Referral Unit where I was put in a room on my own. 

Time then started to rake on a surreal quality, in fact I think I ‘lost’ a day! 

Doctors explained what was wrong and that they were hoping it would pass naturally, nurses kept checking me, asking if I was in pain, taking my temperature, blood pressure etc and giving me the much needed pain relief! 

Now I’m usually very fit and healthy these days and my blood pressure is good so you can imagine my reaction when, at 6am on Sunday morning, when all I’d been doing was lying down for hours, it was recorded at 189/76!

The pain continued and I was being given liquid morphine and paracetamol which dulled it but did not stop it altogether 😦

  
This was the  best painkiller but, as I’ve said, I could only have it once a day!

  

I think this, incredibly unflattering, selfie shows the state I was in!

 
But, as a carer, I couldn’t just think of me! 

I’d left Ray his injections for Sunday and pills for Sunday & Monday but I needed to sort out future meds and meals. 

The meals side was, relatively, easy. My wonderful next door neighbour Pat made him dinner on Sunday. 

I rang the District Nurses to explain the situation, confident that they would take over his medications until I, an unqualified, unpaid mug, oops carer, who had been doing it for 24 years was well enough to be discharged. 

I was SO wrong! The person who answered my call said they would not be able to help. 

I was gobsmacked, and I am again as I’m writing this! 

You’ve seen the state I was in, I truly cannot remember all the details about what happened. I argued and, eventually, they got a district nurse to ring me. 

She was not at all helpful or supportive. She said they were not covered to do it and hadn’t I got a neighbour or family member who could do it? I remember commenting on how they as qualified nurses couldn’t do it but that I should tell a random unqualified person to do it. She then said “Well where are your family?” In a very disapproving tone at which point I lost it. I asked her what the hell she meant and then said tell you what, let’s forget it and just let him fucking die!!!

That got a reaction, she asked me not to swear at her!

I was beside myself and shed the first (& only) tears of the whole episode!

Another, much nicer, nurse rang me later and said they were going to contact our Health Centre to ask the doctors to ask them to do it. 

Exhausted I went back to my pain / morphine / paracetamol haze …….. The phone rang again later … Ray ….. but when I answered it was a doctor ringing from my house to talk to me about what dosages he should have so that she can tell the nurses. 

Now, as his blood sugars can vary between 1.3 and off the scale I vary the dose, but they can’t do that? 

Still, at least I could stop worrying about it. 

Bacon the good stuff ………

I cannot praise Basidon Hospital enough. 

There was a good choice of food

  
I was going on and off nil by mouth as they debated whether to operate but meals were ordered up for me and prepared the minute I was allowed to eat. 

I was checked regularly and pain relief was given quickly when I asked for it. 

I remember at one point being asked if I was in pain and saying that I honestly didn’t know any more!!!

By midnight on Sunday, after continuous pain, and no sleep since Friday   I asked for, and was given, a sleeping tablet, but by 4 a.m. the pain was bad enough to wake me up again, that was the end of sleep! 

I was getting very good at sucking the very last drop out of the morphine syringe! Anything I was offered I grabbed! 

Another examination by the doctors ….. back on nil by mouth, preparations made for an operation to fit a stent. 

The pain, despite 2 lots of morphine and paracetamol was unbearable and I was walking round the room more to distract myself than anything else. Then I went for a wee, looked back and thought ‘what’s that?’ 

I could see a bit of grit in the toilet bowl, it was still there after I’d flushed but the pain had eased so I grabbed it, took it to the nurses and asked if it could be significant!

  
I cannot believe how something so tiny could destroy me!

I’ve now got to do some praising!

Everybody I came across at the hospital were brilliant! The nurses, the support staff, the doctors, the radiologist, the cleaners ….. everybody! I could not have been treated better!

But not only me, I saw the care that was given to other patients especially a group of Alzheimer’s patients including Annie (not her real name) an articulate, intelligent, argumentative woman with kleptomaniac tendencies. Although in my hazy state she gave me some amusement she must gave been driving all of you mad but you were amazing with her!

All the Facebook comments. The text messages and offers of help (you know who you are) were much appreciated. Thanks guys!

I must also thank brother Nigel and, even more, my sister in law Renei who brought me stuff in, shopped for me, sorted out Ray’s tablets, are a meal with him and took me home with her and thoroughly spoiled me before I returned home on Tuesday. 

Recovery is taking some time and I’m still taking paracetamol but that’s enough!

 I have had to accept that I can’t go to the riot training / control and restraint day that I’ve been looking forward to for years 😦 

I’ve also said I can’t do the search dog assessment on Saturday 😦

My knee has benefited from the rest tbough and feels great 😃

From tomorrow we are going to practice Ray doing his own meds. We obviously need to be self sufficient!
Best comment I have received – had to be added 😃😃😃

  

What does a 62 year old do?

Two weeks since my last post, and in that time I’ve aged another year. I am now 62!

I remember that, throughout my life, I’ve heard people who are older than me saying how they don’t know how they got that old, that they don’t feel any different etc. etc. Very amusing thinking back to a friend’s 30th birthday when I bought him a walking stick and a bottle of Grecian 2000. Well, at that point he seemed old to me!

So, 62!

I’m fairly confident that most of the readers of my blog are younger than me and may wonder how one spends one’s time when one gets to that age.

Well, I don’t know how ‘one’ would, although I do see groups shopping and lunching together, but I do know what I’ve been doing.

So, in that last two weeks I have:

  • read an inspirational book called Unbroken. The true story of Louis Zamperini, an athlete who was on track to run a sub 4 minute mile when he was caught up in World War II, shot down and drifted for weeks in a life raft with no provisions, survived being captured and being placed in Japanese slave camps, got over his experiences,  forgave his captors and continued to be inspirational right up to his death. His experiences have been made into a film but I would really recommend the book, I learned so much about the war that I did not know. I love the photo of him skateboarding at 81!
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  • I’ve spent time in a men’s prison. As I’ve said before I’m on the Independent Monitoring Board of a Cat B men’s prison. It’s voluntary work (my medical problems and early retirement mean I’m not allowed to work) and it’s fascinating. There are masses of voluntary opportunities out there. You could help in a charity shop, do meals on wheels, help with youth organisations, visit housebound or elderly people or find ‘different’ things like I have!
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  • Talking of voluntary work, I’ve been out acting as a missing person (misper) for the search dogs both day and night time exercises. Now this is something anybody could do, you only have to stay put until the dog and it’s handler find you! Google search dogs and your county / area. They need new smells to look for so I’m sure you’d be welcome!
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  • This one is not something I do but only because I’m no longer allowed to and I want to make a plea for all of you to do it. DONATE BLOOD! Or better still donate platelets. A friend of mine’s two year old daughter has leukemia. She’s undergoing treatment which involves her needing a lot of platelets. Raising money is great (https://www.justgiving.com/hattieshaka) but giving blood / platelets doesn’t cost you anything but can make a huge difference to others.
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  • woken up at 4am to hear Ray grunting and shrieking. He’d fallen out of bed and was having a massive hypoglycemic attack. I tried to get glucose syrup into him but failed so it was 999 time. I love our emergency services! The operator took the details and immediately dispatched a paramedic but she insisted on staying on the line until they arrived in case of any changes. Chris, the paramedic, arrived very quickly, blue lights flashing, and established that, even after the bit of glucose I’d got into him, his blood sugar was only 2.3! The choices were: glucose gel (already tried and failed), injection in the bum or an intravenous drip (no chance of that!). Somehow we were able to get hold of him between us and hold him still for long enough for Chris to do the injection …… then we had to wait about 15 minutes for it to work! As Ray was very agitated we managed to get him sitting upright on the floor and I stood, knees bent, behind him so he could lean on me. The noises that were coming form my bad knee were unbelievable, well they kept Chris and I entertained for a while! Eventually Chris and I were able to get him back on the bed, remember Ray’s right arm is paralysed and his leg isn’t much use, it is so much easier when there are two of you! After persuading him to eat his blood sugar eventually rose to 5.7 when Chris felt he could leave him in my capable hands 🙂
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  • There was a four part series on television recently that I was completely hooked by, Walking the Nile. Explorer Levison Wood walked the length of the Nile (apart from a couple of hundred miles of active war zone that it was impossible to enter) from it’s source to the sea. The places he saw, the people he met and the experiences he had were amazing. The journey took him nine months and during that time I travelled through lush, green areas, areas that were almost impenetrable, deserts, war zones, you name it it was there! One of his companions died from the heat. They narrowly escaped in a gun battle. But the thing that stayed with me was the beauty of the country and the people. When I heard that he was doing a lecture on his experiences in London I had to go. My friends either could not come or didn’t want to so I went on my own! I’ve always been prepared to do stuff on my own, if I want to do something I’m not going to not do it just because nobody else wants to!!!!! It was fascinating to see ‘the man’ and to listen to what he had to say. You may remember in my last post I talked about JP Cole, Sierra Leone and how inspiring I found him. Both of these guys talk about the things they have done, seen and experienced in a matter of fact way and see the humour and humanity in situations. Neither of them over dramatise or sensationalise situations which makes their messages even more powerful. I’ve said before that if I didn’t have Ray I’d get a dog. Now I wonder if I would go to Africa???????
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  • There was another TV series I was hooked by, Lost Worlds with Monty Halls and Leo Houlding. I seem to be spotting a bit of a theme here! Whilst I have the commitment and sheer bloody mindedness to go on challenges involving walking and people I don’t think I’d have the skills and therefore the courage to do the stuff they were. If you get the chance watch both of these series!
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  • Last, but by no means least, my training! I love my training! Darryl’s just changed my programs again and I’ve got three new ones to do on my own at the gym. Getting new programs is always exciting because they push me out of my comfort zone and challenge me again! I can’t tell you what they are or I’d have to kill you (ha, ha, ha) but I can say they include kettlebells, dumbells, barbells, boxing, ViPR and TRX! One of the programs is intervals. Now I hate cardio …… unless it’s the right sort of cardio! This is the right sort for me! You may have heard of a formula to calculate your maximum heart rate 220 – your age. What a load of tosh! In that case I’m 40 years old!!!
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  • I trained with Darryl today and we were doing cleaning …….. Which is sort of like this but with a lighter bar!
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  • Last week was our first session on this and I was learning the technique. At the end of the session I tried the last rep with 20kg and failed. By the end of today’s session I was doing sets of 5 with 25kg. Nothing when you compare it to my hero Zoe Smith but I was thrilled for me and it can only get better!
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  • I feel the need to say that Darryl lent me the book Unbreakable and told me about Walking the Nile (I told him about Lost Worlds!) Personal training is so much more than beating somebody up! Time to plug Club One Hundred again!!!
  • So, what can a 62 year old do?
  • Anything she wants!!!!!!!

Blessed is she who expecteth nothing …..

Imagine you were going to the dentist. You weren’t worried or nervous, you just knew it was something you needed to do.

When you arrived at the surgery you were shown into the waiting room. You sat down then looked around the room. On all the walls there were pictures of dental procedures and, as your eyes moved from one picture to the next, your stress levels rose.

That was what it was like for me today. As I sat in the room waiting to see my MP there were photos all looking down on me (literally as well as figuratively) and I could almost hear them saying ‘Why are you here?’

David Cameron, John Major, Margaret Thatcher ………. Not the sort of company an ex teacher from a school in a very deprived area of Inner London is likely to feel at ease with.

So why was I there and what did I expect to achieve? As I said in my last blog I was there because of the difficulty in gaining access to support and, quite honestly, I didn’t expect to achieve much!

My MP arrived and we went into another room, that helped :-).

He began by saying that he’d read my email and that he was sorry I’d had so many problems. That although these weren’t his areas as my MP he had some responsibility.

We started with the Blue Badge photo issue which I was happy to tell him was now resolved, although it cost me two days ‘care’ money to call the 0845 number to pay for it!

The wet room – estimated cost £5000 but we are not eligible for any help from the disabled facilities grants because I have worked all my life and I have got a pension. Yes, you heard that right. Not only have I given up many aspects of my life (& saved the state a fortune) to care for Ray I am now lucky enough to be allowed to give up my pension to pay for his disabled facilities.

The care component. I told him how insulted I feel that what I do is valued at £12.15 a week. I said we would be appealing. He said he would write a letter I could send with the appeal but it would probably not carry much weight.

As I’m writing this I realised £12.15 did not sound right.

Googling reveals that the lowest care component is £21

But Ray has been awarded £12.15!

He said he would write to our County Council asking what help they could offer including respite care. Ray has made it clear tonight he won’t have that!

As we chatted at the end we talked about more personal aspects of our lives which I won’t go into but which were more ‘real’. I told him that what I was really after was not necessarily the money but the recognition of what I, and many, many other people do on a day in, day out basis.

I told him that Ray and I are not married and that we had 28 months of a ‘normal’ relationship followed by 25 years of my being his carer, with no aspects of a normal relationship!

I told him that I wanted people like him to understand what the lives of people like us are like.

As I left he asked if he could ask me a personal question. I said of course, and I meant it.

He asked me why I have stayed with Ray and kept caring.

Some people may have been offended by this. I was not, in fact I felt it was probably the strongest moment of our meeting.

I told him that everybody had told me not to, but I was not brought up to walk away. My mother supported and cared for my father. My maternal great grandmother did the same for her husband.

I am a strong woman from a line of strong women!!!

That said, I am not invincible.

I found this whole business extremely difficult.

Those of you who know me know that I do not do crying. Put on the positive face, laugh, joke, turn every negative into a positive. I explained this at the start of our meeting but warned him how hard I find it and to ignore any tears.

My eyes leaked all the way through the meeting and we both ignored it. I’d like to say thank you for that!

What next?

As our care part has now been assessed at the lowest level again we are now going to appeal to an independent tribunal.

Ray’s mum has kindly said she will pay for the wet room so we will look at getting that started.

I’d like to thank Ray’s mum and my brother and sister in law for the support they give us. They’ll probably never see this or know I’ve written it but it really helps.

I’ve got some ideas on how I’d like to see carers helped and that will probably be the next blog!

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Oh, I told him I write a blog and gave him the details so I expect he’ll come and look.

I hope he agrees this s an accurate reflection of our meeting, and if not, makes a comment.

Be careful what you wish for.

In 1987 Ray and I were looking forward to spending our second Christmas together. But we decided that was what we wanted to do, spend it together, not with our families.

So, rather than upset anybody, we told Ray’s family we were going to mine, and my family we were going to his …… and we stayed at home and didn’t answer the phone! We had a great time just eating, drinking, going to the pub etc. but little did we know what was to follow.

On 30th November 1988 (four days after Ray’s 38th birthday) I came home from work to find him lying on the floor. He’d had a brain haemorrhage within minutes of me going out of the door and lain there all day.

I remember every single detail of that day, it’s like a recording stored in my brain, and I’ll never forget it. Calling the ambulance, running in and out looking for it, reassuring Ray, packing him a bag, answering the phone to his work colleague who’d been trying to contact him all day ……… everything! Going to A&E, where it was clear they didn’t expect him to live. Ringing his mother (who I’d only met a couple of times). Seeing him admitted to a ward and then going home, alone, to clear up! An awful night.

But neither of us had any idea how much our lives were going to change.

Ray was in hospital for three months. We spent Christmas in the hospital. Probably my most emotional Christmas ever. I remember sitting next to his bed when the staff came round singing carols. A bittersweet memory.

We spent three months in Lewisham hospital. I say ‘we’ advisedly because, whilst Ray was technically the patient, I was there every minute that I could be i.e. when the ward was open and I was not at work. At the end of that time we were rehoused in a one bedroom ground floor flat. We’d been living in a basement flat and, whilst I could get him down there (once) getting him back out would have been a different matter!

The hospital social worker told me that if I had not been prepared to look after Ray he would have not been able to be discharged and would have had to go into a home. Some friends and colleagues advised me against spending all of my time at the hospital and agreeing to be his carer. But, as always, I knew best …… or did I?

24 years later we are still together.

We never married (not at all bothered by that, I refer to him as my husband because it simplifies matters) although i do regret we never had kids. We are regarded as a couple because we live together. But we are not a couple in any conventional sense.

My role is more that of being a mother to a very strong willed, 6 foot 4 inch, toddler (paralysed down one side) who has a great deal of difficulty making himself understood.

The frustration this causes can lead to Ray becoming aggressive and abusive. Although he has a lot of trouble ‘finding’ words he’s never had a problem finding “Fuck Off!”.

Ray likes a drink. ‘A’ drink is a bit of an understatement though. He gets drunk, sometimes very drunk. He falls over and cannot get up. Who picks him up? Me!

He’s insulin dependent diabetic, the alcohol lowers his blood sugar and he has hypo attacks which can lead to him going into a diabetic coma. Who deals with these? Have a guess!

Ray hates hospitals with a passion. Actually, that’s not true. He has a lot of respect and gratitude for hospitals and the medical profession but he is terrified of having to go back into hospital. So, when he continued to be in severe pain after one fall, it took me days to persuade him to go to A+E. When we finally went X rays revealed not only had he broken his elbow in his paralysed arm, there was evidence of previous breaks in the same area. Subsequent tests showed he also has osteoporosis. When the hypos have been so bad that I’ve been unable to bring him round and had to call an ambulance we’ve had the farcical situation as he ‘comes to’ of him being polite and friendly to the ambulance staff and threatening to kill me when they look the other way!

Do you watch detective programmes? Have you heard of luminol? If our bungalow was ever sprayed with it they’d be able to turn off all the lights for miles around. Body fluids are us!

Don’t get me wrong. I love Ray, I might not always LIKE him but I do love him. I also understand him, his problems and how he feels. Can you imagine how it must feel to be totally reliant on another person? I’d hate it and I’m sure Ray does too.

But don’t worry, we live in a welfare state so there’ll be plenty of money to look after him won’t there?

Ray gets the higher level mobility allowance as he can only walk very short distances, very slowly and with a lot of difficulty. He gets disability living allowance as he’s unable to work. We’re very grateful for these.

My concern is around the personal care component. The ‘disabled person’ has to complete a long questionnaire describing their problems in order to claim this. Imagine if you became disabled and were reliant on others then had to fill out a form saying all the things you can’t do. Having spent hours and hours trying to build up Ray’s self esteem he would not say how bad things were on the form so he ended up with the princely sum of £20.55 a week to pay for his personal care. There was nothing I could do about this. HE has to submit the claim. He has just agreed to reapply and has now completed the form giving an honest (and very depressing) picture of his needs.

Meanwhile some people who do not need a high level of care have no problem saying that they do because they have no self esteem problems and view it as a way of gaining money. I know they exist be cause I know some of them!

BTW Ray’s care component is only 25 pence a week more than child benefit for the first child.

Oh, and what do I get for caring for Ray? Nothing. Not a penny.

And there are millions of people like me in this country who give up their time, and in some ways their lives, to caring for others. Sometimes because they want to, sometimes because they have to as there isn’t anyone else, mostly (probably) a combination of both.

Ray was used to me going to work and we found ways that allowed me to do that. Since I had to stop working because of my health I’ve continued to go out during the day (we learned the importance of my having ‘me’ time when I had reactive depression) but he wants me here in the evenings and night time.

And we have spent every one of the last 24 Christmases at home, alone. Well it was what we wanted!

Can you imagine being the sole carer for someone who is completely reliant on you for 24 years? I have NEVER been at home on my own during that time!

So I don’t do housework. I don’t do ironing. I don’t do any of those ‘womanly’ tasks.

I walk, I row, I climb steps, I lift weights, I hit a punchbag and I laugh ……….. a lot!!!!

Life is what you make of it, and I’m going to make as much of mine as I possibly can!

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