A while ago someone suggested that all us carer’s should write downwhat we do. Basically a job description, which I thought was a good idea and it’s not until you write it all down that you realize how much you actually do as a carer. A while back I had to write down and explain everything I do for @raspberrytalk for a letter I had to write in support of him to get his DLA. It surprised me how much I actually do and how many of the things I do without realizing I do them (sounds strange I know but it’s true). For example, making sure that @raspberrytalk does not drift into a road/person when walking. Also, while writing the letter, it made me see that I do things that I never thought I'd ever be able to do. Which also made me realize how much being a carer has changed me. It’s made me stronger and more assertive when I needed to be; I’m normally not an assertive person but, when it comes to being a carer, I am. Sometimes I read my old blog entries and think I'm reading about someone else entirely. I’m sure other carers will be able to relate.
JOB TITLE:
Carer
DESCRIPTION:
Looking after the physical and mental health and well being of @raspberrytalk.
DUTIES:
Administering First Aid when required.
Administering Medication
Assist with getting in and out of bed
Assist with dressing and undressing
Assist with personal care and hygiene
Offer mental stability and point of focus when required
Lift off floor after a fall or seizure
Assist with walking
Watch for changes in behaviour and act accordingly
Maintain a safe environment
Takecare of nutritional needs
Provide encouragement with simple tasks
General house work including making beds, tidying,
washing up, laundry and cooking meals.
Assist with feeding when required
Take to appointments and chaperone
Collect medications
Help with completing forms
Managing finances
I have probably forgotten loads of things, but this is all I can think of at the moment.
Psychogenic Non-Epileptic Seizures – PNES - are attacks that may look like epileptic seizures, but are not caused by abnormal brain electrical discharges. They are a manifestation of psychological distress. Frequently, patients with PNES may look like they are experiencing generalized convulsions similar to tonic clonic seizures with falling and shaking. Less frequently, PNES may mimic absence seizures or complex partial seizures with temporary loss of attention or staring. A physician may suspect PNES when the seizures have unusual features such as type of movements, duration, triggers and frequency.
I think it was in 2012 when @raspberrytalk had his first seizure. To cut a long story short we went to see our GP who made a referral for @raspberrytalk to be tested for epilepsy. So he had a very basic EEG test which came back clear for epilepsy … which both myself and @raspberrytalk were relieved about. But it meant we didn’t have answers and meanwhile these seizures were becoming more frequent and violent. Some of the medications @raspberrytalk is on are sometimes used to help people with seizures mainly epileptic, but they don’t seem to work for him.
Because the doctors and specialists can’t find anything biological causing these seizures they put it down to stress, “unresolved psychological/emotional issues” and so on and there is supposed to be triggers. I’ve been watching my husband have these for a long time now and I have even tried to see a pattern - and I’ve yet to see one. So how on earth can someone who doesn’t really know my husband or even seen his seizures say they’re all in his head? Surely if this was the case I would have seen these triggers and could help my husband avoid them when possible? I’m constantly telling the specialists that I can’t see a pattern and that there appear to be no specific triggers … but they just ignore me and still ask us to keep a record of the seizures and what he is doing/thinking/feeling when they start … very frustrating for both myself and @raspberrytalk.
@raspberrytalk even has these in his sleep! I have to sleep in a separate bed away from him because I have been injured before by him having a seizure while in bed … not a lot of fun getting smacked in the face, elbowed, kicked…….
I believe that if more in-depth tests were done that they may reveal something. But where to start? @raspberrytalk has already had a spinal tap done, MRI’s done, blood tests, EGG but all these have been basic tests … what other tests could be done if we had money to pay for them? Maybe a Functional magnetic resonance imaging with contrast, a more in depth EGG or further/different blood tests? What is the answer? Unfortunately, without money to pay for more tests privately, there not much more the doctors and specialists can or will do. So for now all the medical professionals are treating these seizures as a mental health condition …!
So, how do other people react to seeing or hearing about these seizures?
Tell most people its not epilepsy and they seem to think they’re not as serious or as harmful to the people having them. I assume its lack of knowledge making them think this, but these types of seizures are just as bad and, unlike epilepsy, a lot of the time the person having one of these seizures is aware of what's happening to them and they can feel it too!
When @raspberrytalk has these while out in public most people just stare, but there has been some people who have asked if I/ we need some help. If we’re in a shop I usually ask them to get a First Aider who can then assist me with keeping @raspberrtalk safe. Going food shopping has become a real challenge because of these seizures (just read the following link seizures in supermarkets).
I was recently asked to describe these seizures and I found it very difficult to put them into words, mainly because when remembering seeing my husband have these it makes me very emotional and usually end up crying. One way I do end describing them is by referring to the film The Exorcist because a lot of the movements he makes remind of some of the scenes in the film for example this! Also, a lot of the movements look like muscles tightening, he sometimes arches his back and twists his neck in such a way I think his head is going to turn round like in the film!
So what do they feel like? Let’s ask @raspberrytalk
Non Epileptic Seizures, PNES, Non Epileptic Attack Disorder, Pseudo Seizures, Conversion Disorder Seizures. They have loads of different names for the same thing – but I’ll start by saying that everybody’s NE seizures are different. What I go through can be wildly different from what others experience, so I can’t presume that this is what everyone else experiences. I also get absence seizures (or possibly Atypical absence seizures).
Regardless of what they call them, for me the NE seizures are excruciatingly painful and terrifying.
I assume everyone understands the basics of how we move, that muscles only pull not push? An example – at a basic level, if you want to lift your forearm your bicep contracts. To lower it again your triceps contracts. Obviously there’s a lot more to it than that involving tendons, bones, etc, but you get the point. If you’ve ever lifted heavy weights, or had an arm wrestle you’ll understand what it’s like straining your muscles against something. Well now imagine what it would feel like when ALL your muscles and tendons decide to pull or contract at once! What would happen to our basic arm example above if the bicep and triceps decided to BOTH contract at the same time!? Well that is what happens to me. Arms, legs, shoulders, neck … all trying to pull against one another in all directions at the same time. We have the fun of abs spasming while my back muscles join in, so I start knifing backwards and forwards at the waist. Apparently sometimes the back muscles win and I’ll arch my back so high that only the back of my head and the backs of my heels are touching the floor!
My jaw locks tight. I have stress fractures in all of my teeth now. My chest and diaphragm go mental, so my breathing is buggered and I start juddering like I’m attached to a jackhammer. And lets not forget the clenching and unclenching of fingers and toes, wrists and ankles and everything in between.
So while my arms and legs are flailing about, bashing objects, the floor … sometime people … I can feel all of this. The agony in my muscles, tendons and bones, my arms and legs bashing things. Even my head smacking repeatedly into the floor because of the shaking and my neck muscles going “exorcist”!
At the same time that I’m going full on possession, I can barely breath because of hyperventilating or holding my breath while my muscles strain, my heart (a muscle remember) is pounding a drum solo and trying for the world record of “most beats per second”, my blood pressure is up, blood sugar is down, I’m barely aware of what and who is around me or where I am, I can’t see properly, I’m screaming in my head because I can’t scream out load (no air, jaw locked, etc) and all I’m fully aware of is that my entire existence, at this moment, is pure, agonising, burning pain. Just pain. When I do try and scream out loud it usually just gets cut off while my throat closes and stops me breathing.
And lets not forget the terror. What is happening to me? I can’t control my body – what if it never stops? Is this it? Am I going to die this time - have a heart attack or burst a blood vessel in my brain? Stop breathing? Are my muscles going to tear or a tendon snap (it bloody feels like it!)? What if I survive, but get brain damage? Snap my spine and end up in my wheelchair permanently? Burst blood vessels in my eyes and go blind …. and on and on and on … all running through my head, while at the same time still worrying that I might hurt my wife or someone.
Afterwards I feel like I’ve run a marathon and then gone 5 rounds with a seriously pissed off tiger. All I can do is lie there, completely unable to move, everything hurting and aching and just concentrate on breathing … IF I’m lucky … because sometimes what follows my seizures is the fun of a panic attack!
And what have I been offered at every turn, by every doctor I’ve seen? A referral to a psychiatrist. Hmmm, well, it must all be in my head then.
update 03/08/15 My response to Warner and reading there letter.
***UPDATE 01/08/15***
Just received a response from Warner Leisure Hotels basically saying thanks for the feedback and that they feel are expectations are too high.......also they have blamed me for inappropriate conversation on twitter and facebook.....WTF they also feel we should use another holiday company......I'm disgusted with this response considering in my letter there was pictures of a damp room and dirty room........not good for a company that have fancy adverts..........I very rarely complain and when I do I get such a bad response..........not sure whether to write back or not..........either way warning to you all don't complain to much with warner they don't like it.........
***UPDATE 25/07/15*** - In response to this blog and comments on twitter, Warner have responded by simply blocking @carersvent from both their Facebook and Twitter pages. Well done Warner. A great way to treat customers when YOU always say you welcome ALL feedback, both good and bad.
Those of you that are regular readers of the blog will know that @carersvent and I have had a few issues with Warner Hotels over the last few years. Water running down walls, dodgy fixtures and fittings, stained carpets …. even the joys of a half bath!
So, after our last visit we were offered a free holiday by the General Manager at Corton. Yep, FREE! 4 nights including food. They were going to have a £1.5m refit in 2015 which included new lodges with sea views and new beach garden lodge suites.
Initially we were told we’d get one of the cliff top lodges with a sea view because they wanted to WOW us and show us what they could REALLY do.
But there was a delay in getting sent the confirmation of the offer, so I can only assume that by the time we booked only the beach garden suites were left.
But hey! Free holiday, so no complaints, but no Wow yet.
So we went down last week for our wedding anniversary and first thing we noticed on arrival was the disabled bays right next to reception. Great you say? Yep …. but these bays were once normal single bays. They have been painted yellow and had a wheelchair added …. but hey, wait a minute, these bays are actually narrower than a normal standard bay. In order to get numbers up they have squeezed the lines closer together! When we came out of reception after getting our keys I could barely get the car door wide enough to squeeze in. NOT a WOW by any stretch (and I’m sure there are planning regs about the required size of disabled parking bays …. ).
So … we got our keys and went over to the beach garden and it was really nice! Our first little wow.
It was nice and quiet and had a seating area in the middle for just chilling out. All of the apartments faced into the garden and all had their own seating areas ……. well, all except nos. 1 and 2. Due to the poor layout design, apartments 1 and 2 were set back to allow a stair case to the 1st floor apartments. I’m sure with a little more thought and some jigging around this could have been avoided. But that might just be the layout designer in me (I did it for 13 years!), besides which there was probably costs and other issues involved.
In any case, apartments 1 and 2 didn’t have seating out front facing the lovely gardens. And even if they did, the view from no 2 would be blocked by the side of the adjacent apartment. ……… So guess where we were? Yep, No. 2!
Definitely NOT a WOW!
Well in we went … the apartment was actually very nice. Prefab, but still nice. Well decorated, TV in both the sleeping area and seating area, Tea & Coffee, mini fridge, safe. Everything you would expect from a normal room/suite. Of course I would expect this as the basic level of fit out in all of the rooms, not just the “premium” suites/lodges. Maybe I’m just spoilt.
Anyway, next on the agenda. Our “private patio”. Ah ha! This will make up for the loss of view out front. I was looking forward to this. BIG wow coming I expect …….
Oh dear….. Oh dear, oh dear oh dear. Here is where it all fell down.
We stepped out of the lovely bi-folding patio doors on to a nice deck. But was it private? Errmmmm ….. no. It was built in the car park!
Now I don’t mean it faced the car park. I mean it was IN the car park. The same idiot designer that had stepped the building had removed some parking bays and designed a deck area that extended out INTO the car park. And no, not even a fence to make it “private”.
And to make matters worse they couldn’t even be bothered to make it accessible from the car park. We parked right next to our deck and had to walk out of the car park and all the way around to the other side of the building in order to get in. The very least they could do was add some steps from the car park up onto the deck!
What’s the opposite of wow!? I don’t know, how about Duh!? WTF? Are you sh****g me!!? Yeah, one of them I suppose.
So we went back inside determined to make the most of it. Sam checked the bed – 2 singles zipped together. Pretty standard stuff. We had phoned in advance and asked for a mattress topper because the zip always sticks in me. Nothing there (non-wow).
So we went to see the manager. After speaking to 3 different people on reception we finally got told that no managers were available … but then the Head of Sales came out. She nodded and ummed and erred and said thanks for the feedback about the deck.
Sam then mentioned about the mattress topper…. No record of our request (non-wow)… and they don’t actually do mattress toppers for the doubles (non-wow). But we could have an extra duvet put under the sheet….. Hmm ok, but hardly a wow.
Then Sam mentioned that it would have been nice if someone had offered us some help with our bags when we arrived. At which point the lady perked up a bit and asked who had checked us in? We spent a few minutes describing 6 or 7 possibilities from all the staff wandering about, but couldn’t agree on who it was.
Well apparently there is a porter service and it should have been offered when we checked in. Another non-wow, but we’ve been to other Warners and have NEVER been offered a porter service! …. all together now “non-wow”!
Well we weren’t offered a different room or anything like that, but she did give us some vouchers for lunch. Of course these couldn’t be used for everything (i.e. the stuff you might actually want, like a bacon and brie panini or any drink). No these could only be used for specific items on a special, very limited, menu. A tuna sandwich, a slice of victoria sponge. Nice, but not what we wanted for lunch. … oh and I think a baked potato was on there too.
We’d also requested a couples table in the same phone call as the mattress topper, but yep, you’ve guessed it, no record of that either (non-wow). However the young chap giving out table numbers in the restaurant was very accommodating and made sure we got a good table.
Overall we had a relaxing and enjoyable time, but I can’t really say we were wowed:-
The room was nice, but that patio bugged the hell out of me. We never used it and instead took our coffees over to the chairs in the middle of the garden. Nice, but a lot of walking back and forth for this disabled guy. When every step you take is painful, having to walk 100m just to use the toilet is like running a marathon (not to mention how bloody annoying it is to have to keep going back and forth whenever you want to “quickly” grab something).
The service in the restaurant was great as always. Our waitress even went and hunted down some grated parmesan for my meatballs and pasta, even though it wasn’t on the menu!
However the food was … erm … nice. OK. Don’t get me wrong, by no means was it bad. No, it was lovely. … But it wasn’t stunning. We’ve stayed at several of the other Warner hotels and the food has always been top notch. It’s one of the things we enjoy about Warner. But this was … nice. It just seems to have lost it’s edge since last year.
Swimming pool is still lovely (although the steps are far too step), sauna was just what we needed too. Unfortunately the steam room was out of order. Oh well, we can’t have everything.
All in all an enjoyable time …. but I was certainly not Wowed by any stretch and to be honest I don’t know if I’d go back.
