Carers can come in all shapes and sizes, they can be parents, family members, friends or professional people.
I’m very lucky in my life in that I have a special mum and special friends who are there for me. Here are statements from 2 of my very special people who look after and care for me very much.
My mum – “A mother as a carers view”
My friend Rolf – “A friends view”
Caring for an Epilepsy patient is a very hard task. There is no help available unless the patient is a child orhas severe impairment. Adults with Epilepsy don’t seem to qualifyfor help unlike other conditions such as autism/ cerebal palsey . Unless the person with Epilepsy has other health issues effecting mental ability or a severe physical impairment there is no help available. There is this barrier and the care has to be provided by the family.
There are no day centres, no respite and no professional carers to help. There are no charities that help carers unless the cause of Epilepsy is severe head trauma and then there is “Headway”.
The category of being a young adult with severe uncontrolled Epilepsy but is mentally fine, who needs constant supervision and care to stay safe is being totally neglected by the authorities. Epilepsy doesn’t in itself qualify you for any help at all.
The carer has to rely on family and friends however this is not always possible as not everyone will take on such a task.
My daughter Jo falls into this category. Im her sole carer. We have no family that feel able to take on the task of helping me have a break and friends who are capable of the task are limited.
It is thought that a seizure happens and then the patient is fine. NO the patients stop breathing sometimes. They injure themselves when they fall everything can be a danger and so an Epilepsy patient is hard to look after. Its a 24/7 job that falls to the parent, even when the patient is in her 20’s !
As a carer and a parent the financial effect can be hard. If the parent is at pensionable age such as myself carers allowance is not applicable anymore. This shouldn’t be.
The physical side is hard but the mental aspect is harder. Jo also has cluster headaches and heart failure. (We still don’t qualify for help because mentally she is sharp as a pin!) to watch your child go through struggles after struggles, battling Epilepsy everyday and watching her in pain every minute of every day is mentally draining. She had a career, a life, all that was taken away because of the complaint. The frustration that the patient has can sometimes get them really depressed. Jo is so frustrated that she can’t work anymore, frustrated she can’t be alone and so many other frustrations that all the restrictions of this condition impacts upon us. The patient can become very depressed and this alone can be devastating.
There needs to be more help out there. For us as carers too.
Sharon Mumford (2014)
The first time I remember seeing Jo was at the concert band that we both play in. It was autumn 2013 and she came back from a long spell of absence, armed with flute and oxygen flask. And played with full gusto. Little did I know how poorly she was. Yes, she’s got epilepsy, I heard. Oh, that’s not very nice, I thought, being totally ignorant on the subject.
In December we travelled to a few Christmas gigs together. Talking and observing, I started to get an appreciation of the troubles she has and the pain she endures, just to be able to come and play music with a group of friends. Having gotten to know Jo better, I have nothing but the greatest respect and admiration for the fighter that she is. “Just keep swimming” is her motto, and that is what she does.
We spend quite a bit of time on chatting Facebook. Early on I found it quite disconcerting when, in mid-conversation, Jo suddenly stopped responding. I could only guess that she had yet another seizure, but could do nothing but wait and hope for the best. At those moments I think I felt most ‘useless’, because there was nothing I could do to help. It is somewhat easier now, as I realise that the best way to help from afar is to be a friend and spend time talking and laughing, even if it is ‘only’ on Facebook or Skype.
One of our favourite pastimes is playing music together, developing this website and other ‘Team Jo’ activities. Often Jo’s mum stays around, but of late she is quite happy to go off to work or shopping, leaving us alone. In one of her posts Jo talks about me: “I have very few friends with the guts to be with me alone & isn’t scared of me.” That comment actually surprised me. It never occurred to me that one would need to have guts to be alone with Jo. And the idea of being scared of Jo is simple preposterous to me.
Yes, there’s a good chance that Jo will be ‘floored’ yet again by a seizure. We’ll deal with it as and when it occurs, it is no reason for avoidance at all. In my mind it is not Jo doing the flooring, but it is that beast within her, called ‘epilepsy’, that is responsible. Jo never asked for epilepsy. Most certainly she never wrote a letter to Santa asking for some nice seizures. Neither did anyone wish it upon her. It just happened, and she is a victim of the beast. If you saw one of your friends being beaten up in the street, you would help. I see an epilepsy attack as no different. The attacker cannot be chased off here, but the victim surely needs all the help you can give.
In my mind, Jo and ‘epilepsy’ are separate entities. There’s Jo, funny, bouncy, smart, caring, and then there’s the horrible beast. And I cannot be scared of Jo. Yes, I’m scared with her, when she’s under attack, and I’m scared for her, when it gets really bad. But I’m not scared off. I’m a friend.
Jo’s motto is ‘just keep swimming’. And only Jo can do her own swimming. But surely it will be a lot easier for Jo if she has got friends that swim along with her, and care.
Rolf.