Tuesday, 27 September 2016

Carer Burnout- How do we recognise the signs?

Self Portrait

As a Carer you fear hitting a brick wall. What happens if you wake up and you just can’t care anymore? 
Mentally and physically you are broken. After six years of caring full-time for my twins (who both have disabilities) I am here, I have hit a wall hard and I have crashed to the floor.

I sleep in fits and starts, partly my own mind and body unable to relax, partly because my son who has brain damage rarely sleeps through a whole night. I wake as tired as when I went to bed. At one time no matter how difficult my day had been my head would hit the pillow and I would wake up refreshed. But not anymore. I wake up with joint and muscle pain most days; it might subside but only for a couple of hours.

Over the course of the last 12 months I have been repeatedly dismissed by my GP’s surgery when I have gone in with symptoms. It’s a Vitamin D deficiency, it’s hormonal changes (I’m 44); It’s depression (I don’t feel depressed). I have migraines; well that’s those hormones again.

But through all of this I have continued to have overwhelming exhaustion like nothing I have experienced before. Even when I was averaging 4 hours sleep a night when the children were small I never experienced fatigue like this. At no point did any doctor say ‘Its Carer Burnout’ do they even know what Carer Burnout is?

Last week I went back to my Doctors surgery again. This time a GP with a good listening ear said ‘I think you have Chronic Fatigue’. He has referred me to a Specialist, but then what? In order to get well I have to take away my stress, but I can’t stop being a Carer, and I can’t abandon my kids. In a recent review by our family support worker it was evident that extra support will only appear if I collapse, and I am almost there.

I had not realised how much I had burnt out. Apart from a few hours of respite over the six-week school holidays I did most of the caring on my own. A week away was no holiday for me and my husband as the unfamiliar surroundings sent my son in to meltdown every day. While I have had my symptoms for a year they are worse during the intense times of caring during school holidays.

So how do you recognize burn out? I am seriously angry that no one, not my G.P, not my family support worker has ever given me a list of what the signs are and details of how to get help. But then why would they. Carers are expected to stay silent and just get on with it. Below is some useful information on Carer burnout from Care Watch.

Can you answer Yes to the following? If so then you have Carer Burnout.

I feel overwhelmed, exhausted and drained, even after a rest. (YES)

I feel helpless and hopeless. (YES 90% of the time)

I no longer want to be around my loved one.

I have angry outbursts that are uncharacteristic (YES)

I am increasing irritable and impatient. (YES)

I have thoughts of harming myself or my loved one.

I feel increasingly resentful. (YES, I WANT MY LIFE BACK)

I am neglecting my own needs because I don’t care any more

I am eating, drinking or smoking more than normal
(YES, Pass me more chocolate)

I have difficulty relaxing

I am neglecting important responsibilities.

I rarely see or contact friends or family members

I have difficulty sleeping.

I have lost interest in things I used to enjoy.
(YES, partly because I am so exhausted)

Wow! Why isn’t this in a Questionnaire that Family Support Workers, Social Workers and GP’s can hand out? I don’t have the answer right now, but I am determined to find out. This should be a huge red flag for Doctors yet its not being treated as such.

Care Watch goes on to describe several factors that can push a Carer to the Burn Out stage.

- Providing continual care for someone who is unable to reciprocate their feelings or show gratitude for their care.

- Feeling deserted by family, care services, religion or a partner

- Fears about how long you can cope with limited support

- Frustration and disappointment that, despite the efforts put in, your loved one does not make progress or continues to deteriorate. This is a failure to accept that the care you are providing is not the cause of the decline.

- You are reluctant, unable or unwilling to seek out or accept help from others.

So how do we change things before it is too late? 
I am now in a stage of chronic fatigue and I have to claw my way back to good health some how. As I write this a bunch of people from Social Care are going to sit around a table with my family support worker and decide if I am exhausted enough; and if my kids needs have worsened enough, for me to access more respite care. Should we really have to reaching our breaking point before anyone steps in to help?

How can I help my self? Well Care Watch has some useful suggestions and with some discipline I hope to make the right changes:

Diet – or rather lack of it. I need to ditch the caffeine and the chocolate. Both of these have fuelled my caring days for the last 6 years.

Exercise – Something slow, maybe Tai Chi for now.

Meditation – Not only relaxing but also an opportunity to improve my mental wellbeing.

Creativity – I am currently doing some self-portraiture. Both therapeutic, and creative, I also think it drives the message home of what it is like to be a Carer and feel silenced by a system that doesn’t carer for carers.

Acceptance – Be able to accept my feelings of anger and resentment and understand that they are only natural when I feel over burdened. Of course with acceptance one also has to come to a place of forgiveness and I am not sure I am very good at forgiving myself.

Write about how you feel – Well my outlet is a blog, but you could use a journal.

Most importantly for all of us who are Carers we need to:




If you want to know more about my portrait project visit www.kusuma.co.uk/my-blog

Wednesday, 10 August 2016

The Kindness of Strangers

I had today planned out, but of course the plan and the actual day don't always come together. 
My daughter needed to be at an Osteopath appointment at 10.45am. Mornings are always a challenge as both twins struggle with planning and mapping out in their minds where they are going. Plus there is the breakfast routine and enteral feed to do before even stepping foot out of the house. Most of the morning from 6.30-9am felt like I was stuck in the groove of a record, with the repetitive question of 'where are we going'? I answer then 10 minutes later, one or both of them ask again. 
 I was going to make the day a little easier by leaving my son with his Nana & Grandad. Although elderly both can just about manage an hour with my son if he is plied with biscuits! Unfortunately my mum called to say she was sick and so my son couldn't visit. My mother's voice was distressed on the phone, 'I'm letting you down' she said. 'It's Okay, I will cope' I said in a reassuring tone. But deep down I was terrified of the prospect of coping alone again knowing full well what would happen with a change to the plan. For a little boy with a brain injury, changes of plan have emotional consequences. 
I break the bad news, he screams uncontrollably and refuses to leave the house. I get a note pad and draw out a new sequence for the day, adding in a bribe. Through gritted teeth I say ' I will take you to McDonalds'. I truly hate the place but it is the one place he will sit still in long enough to eat anything. I guess using a McDonalds five times a year won't mean I go to hell, although I can hear the tuts at my parenting skills as I type! 
My son looks at the sequence and agrees to get in the car. My daughter by the way is already standing at the doorway trying to put odd shoes on and teasing her brother that it's her turn to get in the front of the car. 
Disoriented by my choice of carpark my son is anxious before we get through the door of the Osteopaths. When we arrive they head for the toy corner in the waiting room and proceed to demolish the box of Lego and argue at full volume. I am desperately trying to get them to stay quiet as other people stare through gritted smiles! Believe me! In my head I am screaming, 'Just shut up'. I want them to behave 'normally' but that never happens. One child can't share, his brain just doesn't let him,the other is six with the mental age of three so everything is picked up and dropped and argued over anyway. 
A therapist comes out and whispers in the receptionists ear. Next minute we are escorted up to an empty treatment room where the receptionist glares at the children and says 'try to be quiet'. I of course am left in a place of shame! Why ? Why do I feel like that, why does society make parents of disabled kids feel like that. At what point did the world become so cruel? The truth is it's always been that way but I never noticed before, because I wasn't a parent then to a child with Special Needs. I was one of the blissful ignorant. 
We get through the appointment thanks to a Kindle and Minecraft then it's time for me to make good on my promise of a McDonalds. My stomach wants me to put my fingers down my throat before I've even walked through the door. As a vegetarian I drink the water and find there is actually a salad bowl and coffee, no Carers day is complete without a gallon of coffee. Happy Meals in hand we search for a table. It's heaving and there is no room. We miss the last clear space as my son decides to empty half the ketchup pump on to the counter while an impatient woman tuts behind him because he is taking so long and eventually pushes past to the barbecue sauce. 'Seriously is it that great you have to be so rude' I am thinking in my head as I glare. So we wander around the restaurant, with my son and daughter anxious that there is no where to sit. Empty spaces but no one willing to share. Do you remember the days when people shared, rather than spreading their bags and laptops out, so that a one person meal take over a table for four! 
Just when I was about to give up and say we should eat in the car a lady with a young boy catches my eye. 'Sit with us' she says with a smile. What a relief I hear myself say, as I worry slightly about the twins ability to sit with strangers and the fact that my Incontinent child hasn't been for a poo in four days. I remained hopeful that we could get through a happy meal and stay happy. It turns out the lady had worked with children with special needs, so perhaps on one level she had a sense of our complicated life. We chatted, the boys talked about Minecraft and Transformers whilst my daughter was distracted by a woman who was giving out balloons. She caught her eye and soon enough I was juggling a cup of coffee and two balloons. 
The encounter was small but a precious moment because we sat there just as two women with their children making conversation about life. 
There are days when I am not compassionate to myself, in fact I am down right cruel, I punish myself for not coping better, for not being the perfect Carer or the perfect Mum, for not being the perfect Wife. I sometimes need reminding that I am okay just as I am. The kindness of a stranger sharing their table with me and my children was a reminder today that not everyone see's my family and stands in judgement. 
The second kindness was a voicemail message left on my phone ' Hi Kusuma, your name was mentioned yesterday. Lots of people wondering where you are and missing your valuable work. No pressure but you really are missed. We hope you can come back soon'.
Another reminder that in my role as a volunteer Chaplain I am wanted, I am accepted just as I am. I wander around the wards not knowing if I really make a difference but I guess I have made more of an impact than I thought. A gentle reminder today from Amida that my faith as a Pureland Buddhist is always there. Even when I am tired, when I don't feel compassion  towards myself, Amida calls on others to show me I am still loved, I am still worth more than I think I am. Amida loves us Just as we are....really? Yes really, just as we really are. And sometimes it is the moments of acceptance from strangers and work colleagues we barely know that offer more insight in to who we are than the people we think are closest to us. 

Wednesday, 3 August 2016

Five Years Of Caring

The school holidays are in full swing, the children are arguing with each other and I am exhausted. My eye has started to twitch from the stress of looking after the twins single handedly. I haven’t cried yet so I guess for now that’s a positive in an otherwise demanding situation as a Carer to twins with learning difficulties.
This morning Facebook flagged up one of those memory reminders. It is five years ago today that my daughter came home from hospital. She spent the first 6 months of her life on a neo-natal unit and then a further 7 months on a gastroenterology ward that specializes in caring for children with short bowel disease and parental nutrition needs.
A premature birth, followed by an infection called Necrotizing Enterocolitis (NEC) led to my daughter needing a part of her bowel removed. Having contracted NEC twice in the first three months of life, Grace failed to thrive and needed to receive all of her nutritional needs via a Central Line in her chest and a gastrostomy feeding tube in her stomach.
I don’t think that anyone really prepares you for life as a Carer, and if they did we would probably fall apart at the thought of spending the rest of our lives caring for someone we love.
As the weeks turn in to months and then years you find yourself in your quiet moments grieving for the person you once were and for the dreams you once had.
Yes, I was prepared by medical staff on a practical level for what I would need to do when my daughter came home. I learnt how to put up an intravenous feed using a sterile procedure, I learnt how to give I.V anti-biotics and CPR. I can change a gastrostomy feeding tube as skillfully as any nurse. I can do those practical things, but no one prepares you for living on the edge of uncertainty. It’s a very lonely place, and the emotional roller coaster you feel is enough to send you in to a downward spiral of negative feelings and behaviours. But some how I am still treading water, my head is still up although there are days when it feels as though things will never change.
When my twins were babies much of the caring probably appeared to be the same as any other mother with two young children if you don’t count all the medical interventions. Today however life as a Carer is very different. There is some progress as there are no more intravenous feeds, but at age six my daughter still has gastrostomy feeds, is still in nappies, has neurological delay, and behavioural issues and more recently has gone from febrile convulsions to developing epileptic seizures.  

My son had a stroke before birth and while he has exceeded most people’s expectations in terms of his development he now displays behaviour associated with Autism Spectrum Disorder, along with some neurological processing issues.
Getting out of the house is getting progressively harder, not easier. Part of me misses those days when I could just put them in the pushchair and go for a walk.
When the twins were small I got 8 hours of respite a month. The week that Grace’s Central line was removed that was dropped to four hours a month and with County Council Budget cuts the remaining respite was taken away in June 2014. I have since had to fight to get back some respite care and it has taken until this last month to get it back. Four hours of respite a month based on my daughter’s needs and not my sons. My next great challenge is to fight for the care he needs as it is becoming almost impossible to go out on my own with both of them due to their behavioural difficulties.
Yesterday my daughter wanted to look at videos of herself as a baby. I look at myself in those films and I look far less burdened than I do now. The stress is starting to show on my physical wellbeing. I dare not consider how I feel emotionally. I am married, but our relationship is strained by caring for two children with disabilities. We barely know how to be around each other any more and there is no personal space to discuss our feelings or personal needs.  There are awkward silences, arguments about how to parent, neither of us wants the other one to feel the way we do, but circumstances have driven us in to a situation where our relationship is at the bottom of the care pile.
Five years ago we had on rose tinted glasses, we lived in a dream world where we thought things would be better by now. Together we seemed invincible but not anymore. We have grown tired of our circumstances, tired of each other, tired of parenting, tired some days of our very existence. But we are carried forward by the love of our children, the smiles on their faces, and the laughter they bring. It’s those moments as a Carer that you hold on to when the darker times threaten to consume you.
Today while the children were playing in the park I felt the warmth of the sun, took in a deep breath and reminded myself how lucky I am to be alive. I felt a tear roll down my face as I let go of some of the stress I was feeling about my life circumstances. Life is a gift that is so easily wasted in our moments of sadness.

Tuesday, 19 April 2016

Depression & Carer Burnout. Can you recognise the signs?

 Self Portrait

I have been depressed for weeks, maybe even months. It crept in after I completed the PTSD therapy. Yes my flashbacks have virtually gone, which is a huge blessing but I am left with feelings of anxiety, grief and insecurity.
I am not happy. Is happiness not the opposite of Depression? Although I am depressed I am not always miserable so where am I emotionally? 

Then I heard Andrew Solomon say these words "The opposite of depression is not happiness, but vitality, and it was vitality that seemed to seep away from me in that moment."
Yes! I thought to myself, it’s about vitality and nothing to do with happiness, so the big question is how do you nurture feelings of ‘Vitality’ when you are an exhausted Carer? My Doctors answer is a prescription for Prozac. She explained that being an exhausted, traumatised carer, living with high levels of stress and no sleep equals low levels of serotonin.

I am not a great fan of prescribed anti-depressants. Been there back in the 1990’s and that was when I only had me to worry about; let alone a husband and two disabled kids. The Prozac is sitting in the cupboard while I experiment with a cocktail of Rhodiola Root, Agnus Castus, Passiflora, Avena Sativa and Lemon Balm. As a Carer the side effects of anti-depressants do not mix with my caring role. At some point I might have to hold up the white flag and surrender to prescribed medication but for now I want to do it my way. Three weeks in and I would say my anxiety and mood is 50% better so I would say the alternative method is working. My thinking is less fuzzy and I feel like I can make some small plans and pick up the phone. Where as two weeks ago I didn’t want to leave the house.

I have been experiencing problems sleeping and this is a common problem for Carers who are often woken in the night by the person they care for. But this is a serious issue because without four hours or more of sleep you are heading towards multiple health problems. Serotonin levels are greatly affected by the number of hour’s sleep you have. A reduction in the hours you sleep can weaken your immune system and at it’s worst result in premature death.

The Cycle of Exhaustion

You can easily become trapped in a vicious cycle that goes something like this: The person you care for wakes you up several times a night because they are sick for several days or weeks. You average over that time between four or five hours sleep. You are exhausted day and night, which in turn leads you to crave sugar and carbohydrates, which turns to fat! You don’t want to exercise because you feel too tired. Yet exercise is a proven way to boost your serotonin levels and help you lose the weight from the food you were craving. But for some of us the big question is who looks after the person you care for while you exercise? Its not like you can leave them on their own while you pop down the gym.

So you continue in this cycle until the person you care for improves and you are able to sleep a little better. But now you find you are waking up in the night. Why? Because you have been so exhausted your serotonin levels have dropped and not only does serotonin improve mood, it is also responsible for ensuring you get a good nights sleep.  

Here are just some of the symptoms of serotonin deficiency: anger, being unusually sensitive to pain, carbohydrate cravings and binge eating, constipation, digestive disorders, feeling glum from lack of sunlight, feeling overwhelmed, hyper vigilance, insomnia, joylessness, low self-esteem, migraines, and poor cognitive function. Is this all sounding a bit too familiar?

My recent poor health I know I can put down to a difficult few weeks in February when the children where both very poorly and I was living on very little sleep. I am in no doubt that the bouts of depression and anxiety I experience have some connection with the times when I have had poor sleep as a result of being a Carer. At least now I am aware of this and so after periods of poor sleep I need to be aware of the things I can naturally do to boost my serotonin.

Serotonin Boosters include:

Exercise – 10 minutes of Cardio work is all it takes to start boosting your Serotonin levels again.

Balanced diet – try to have a balanced diet and supplement with Omega 3 oils, B Vitamins, Magnesium and Vitamin D during periods of stress.

Herbal SupplementsRhodiola Root has long been favoured as a natural anti-depressant and anti-fatigue supplement that has very few side effects. Passionflower (Passiflora) has in some studies on anxiety been shown to be as effective as anti-anxiety drugs in reducing levels of anxiety.

Sunlight – Proven to increase your levels of serotonin and Vitamin D. Try to go for a walk or sit in the sun for just 15 minutes a day to boost your levels.

Power of Positive thinking – as a carer this can be a tough one, but trying to change who you think about a situation can actively help to increase serotonin levels in the body.

So how do I get this vitality back that Andrew Solomon speaks of? I did read that he personally gets eight hours sleep a night. I am so jealous! I wish I could get eight hours a night as do half the Carers in the country who are looking after someone who requires medical help during the night. 

I think that we can only get the vitality back when the chemical balance in our brain is functioning better. Today I walked in to town for the first time in months, the sun was shining and I felt energised. That would not have happened even a week ago. There is no quick fix; it takes weeks and months of making adjustments to get back on track.

Steps we can take to Boost Vitality:

1.    Meditation. Meditation not only improves our mood but is also an opportunity to release old mental patterns. Think of it as like pulling the weeds out of the garden. We all need a mental declutter every now and again.

2.    Exercise. Short bursts of just 10 minutes a day is all that is needed.

3.    Balanced Diet – Lets ditch the sugar and saturated fat to fight fatigue and boost our energy levels. 

Meditation can help boost our mental wellbeing

As Carers we shouldn’t lose sight of our own health and wellbeing but so often we do. It is vital that we find the space to take care of ourselves. Being a Carer is socially isolating, it brings financial worries, and low self esteem. These are a dangerous mix that leads to depression and anxiety. Over 54% of female Carers suffer from depression and Carers are three times as likely to suffer from moderate to severe depression than the rest of the population. This is a frightening statistic that I feel won’t improve unless we recognise the symptoms of burn out in ourselves and take action.
I don’t want to be a statistic; I want to take action to improve my own wellbeing. So remember: Check in on how you are feeling, talk to someone about your symptoms, see your GP and make a plan to help yourself.

Wednesday, 6 April 2016

The ‘A’ Word is more of a ‘B’ Word

Having sat through three episodes of the ‘A’word  it’s time for a reality check of what life is really like for families coping with Autism. 

The A Word
Scene from the 'A' Word showing central Character Joe who has Autism.

 My emotions were already running hot after Episode 2 of the new BBC drama ‘The A Word’ but episode 3 put me on the boiling point. I was going to keep my comments until the end of the series but I can’t keep silent any longer. This drama promised so much and to quote its writer Peter Bowker ‘We have the opportunity here to make something funny, tough, realistic and inventive about contemporary family life and autism’. It is just a shame that the BBC, Tiger Aspect Productions and Peter Bowker forgot the reality of being a family with a child with Autism in 21st Century Conservative Britain; where our government has stripped us of all the services we need to support our children.

The ‘A’ Word lulls us in to a false environment with its northern accents and plain speaking Maurice Scott, played by Christopher Eccleston. Put a bunch of Northern Accents on the TV these days and some how we are to believe they are ‘one of us’. But actually so far in the series I have seen the family pay for the services of every specialist intervention they have had in Joe’s care. Last night we laughed at the television when Joe’s mum Alison paid for a private Speech and Language Specialist to work with Joe. Seeing the results from the therapists work she turns to her husband and says ‘Lets get her to work with him three times a week’. We tried not to choke on our late night meal, as we sat and did the maths. Even two years ago when I enquired about private speech and language therapy it was £90.00 for the first assessment, which was an hour and then £60.00 per session there after. The therapist in Episode 3’s session seemed to be there for some time across an afternoon. Time on the NHS is definitely not endless and most of us are in the locally government funded system where our kids get seen once a month if we are lucky.

In last weeks episode the parents pulled in favours to get expert advise. I am not sure most families with disabled children can do that, but how I wish we could. When my son was three we paid £250.00 for 30 minutes with a Neurologist. For a family that now only has one income coming in, that is a lot of money to pay out. Thankfully the consultant referred us to his NHS clinic, but of course due to the continual cutbacks to NHS services my son gets to be seen once a year. Once a year is simply not enough when a quarter of your child’s brain is damaged and they are still developing their neurological pathways.

Then there is the subject of education. Where does Joe fit in? In episode 2 his Dad went to look at a Special Education School and he seemed to come away quite positive and supportive of the idea that it might be the best place for Joe. Alison, Joe’s mother was completely against the idea. Special Education was a dirty word it seemed. I felt my heart sink, because I have two children at a local government funded Special School and believe me it is not a last resort. I was hoping the thread of this would be picked up again, but having read the overview of the second series of the ‘A’ word being shown on Israeli Television it looks as though the character of Joe will stay in mainstream supported by a private tutor. http://www.keshetinternational.com/show/drama/the-a-word/  Will the British version change this storyline to present a more realistic option? I hope so. This is the great danger of taking a successful series from another country and reworking it to suit a British audience with a social and education structure that is very different.

I knew very early on that my twins would not cope with mainstream school, it was heart breaking, but I knew I had to get over my pain very quickly and make the best choices possible for my children. We were able to get a referral to a special education nursery via our health visitor when the children were three. Twice yearly a panel meet at the local education authority to offer a small number of places. We were lucky that our children were in the system very early on, but future generations will not be so lucky as the government continues to cut funding to Special Education nurseries. There is the belief that these children can cope in a privately funded nursery with kids who are without needs. But having been there and bought the T-Shirt I can say that this is not the case. Children with Special Educational needs are not supported properly at your average nursery. To quote one nursery manager ‘Your son is a danger to the other children’. My son was three years old and his behaviour was down to inadequate support, love and care at a nursery school that did not understand or have the time to care for extra needs.

Places are limited at SEN schools and so those children on the Autistic Spectrum that can cope in mainstream with support often stay in an under funded SEN unit at a mainstream school. My son is bright, people say that annoying thing of ‘You wouldn’t know there was anything wrong. He looks so normal’. But he can’t cope with large groups of people, too much noise, too much light and too much sound and he crashes to the floor. How then would he ever cope in a mainstream class of 30 students? At his school he is in a class of 11 students, supported by 1 teacher and 3 teaching assistants.

So far in the ‘A’ word I haven’t seen any local education authority input, did I fall asleep at some point and miss it? It is highly likely because unlike the character of ‘Joe’ my disabled children wake frequently during the night so I am permanently exhausted unlike Joe’s mother. I also smiled when she rushes off to Manchester leaving Joe with a baby sitter. I have never had a baby sitter, it is not an option as most people cannot cope with any child on the Autistic Spectrum. I have to employ the services of a special carer, which costs up to £15.00 per child, per hour. With one income in the house this is not possible. Our only local authority funded respite was taken away two years ago and I have had to fight since then to get any reinstated. When Respite does finally arrive I will receive just four hours a month. Joe’s mum Alison seems to dash off to whereever she likes, and dumps her kid with anyone who will have him. Most children on the Autistic Spectrum need a rigid routine and going anywhere requires detailed advanced planning. I also note she is able to run her own business so I am starting to think she is some kind of super woman. She is certainly not like any real mum of an Autistic Child. Most of us are running on empty and barely able to hold down a part-time job, in fact only 16% of mothers of disabled children are able to work compared to 61% of other mothers. I once ran my own business, I employed people, I made my clients happy, and then I had twins, born with disabilities. There was no choice but to close my business, and I lost everything. So show me the real life of a family living with Autism.

Show me the family where the grandparents are so elderly and infirm they can barely take care of themselves let alone help care for your child. Show me the family where the child screams the house down because you gave him the wrong spoon with breakfast. Show me the family where your child is screaming for 20-minutes in a busy public park while other children play and parents stare at you as if your child is being naughty or out of control. The reality is that your brain damaged child that looks so ‘normal’ cannot process the fact that you have ran out of money and can’t pay for them to go on a train ride.  

Show me the mother collapsed on the floor because after five years of no sleep, and fighting for every scrap of help from the local authority she wonders how she will get through the day. Show me the parents who go to bed every night exhaustion, who have forgotten that they were ever young and carefree. So far in the ‘A’ word all the grown-ups seem to resolve their problems by having sex. Most parents of Autistic children just want to go to bed to sleep and some don’t sleep in the same bed because 31% of couples with disabled children have relationship problems.

The ‘A’ word is a ‘B’ word. Bullshit. Made for a middle class audience who will get some sense of Autism, but in the end they will still stand and stare at me and my family the next time my son has a meltdown in public. After the last three episodes they will form the belief that access to support is of an abundant nature, and it probably is if you have the money to pay for it. Over 52% of families with disabled children are at risk of poverty, but I am in no doubt that the BBC and Tiger Aspect will not show anything that is based on reality. Hailed as a drama that will show the reality of family life and Autism, I think it is time to burst that bubble.

If you are caring for a disabled child or adult you can find support through Carers UK : http://www.carersuk.org/

Saturday, 5 March 2016

Mothers Day Blues

For the millions of Moms out there who are also Carers to their children, Mothers Day can be a bitter sweet event.
All mothers experience a greater awareness of suffering once their child enters in to the world. It is as if women see the world through different eyes once they have experienced childbirth. Loss, pain,and vulnerability become more real to us than ever before in our lives. 
A mothers love for a child teaches us to be selfless, to be patient and to be forgiving, and for a Mother who is a Carer it teaches us lessons in limitless devotion. We also learn lessons in suffering and impermanence that mothers to healthy children will never understand. This is perhaps why mothers of disabled children often feel a detachment from the lives of friends whose children are healthy. Sorry friends, but it's true. I will always feel that divide between us. Those of us who are Mothers to disabled children have an unspoken bond between us because we bare the intense pain of our children's suffering and recognise within each other that fragility. 
Nine months after my twins were born my first Mothers Day was spent by my daughters bedside in hospital. Plans to leave the ward for an hour to go to lunch were quickly changed when Grace developed an infection in her Central line. I spent 14 months trying to be a mother to my twins within the boundaries of a hospital ward. Moments of joy when you are a Mother and a Carer can slip through your fingers like grains of sand. Medical care takes priority over everything else and a huge amount of extra physical and emotional energy is required to do the things that Mothers of healthy children do. 
Mother's Day will just be another day of caring for me and thousands of other Mothers like me. Feeding syringes won't wash themselves, my daughter who is almost six will not miraculously stop needing nappies over night and learn to eat three meals a day. If I leave the house this Mother's Day, it will only be after I have drawn in great detail the events of the day so that my brain damaged son doesn't become anxious at the idea of leaving the house. Then there is his new fear of motorways to negotiate, or we stick to quiet country roads, and listen to his repetitive conversations that soothe his mind about where we are going. Mother's Day will be another day of cultivating patience, whilst fighting exhaustion. It will be a day of challenges but it will also be a day filled with unconditional  love. Happy Mothers Day to every Mother like me, may your spirit remain strong, when the days of caring are long. 

Tuesday, 16 February 2016

Fear & Sickness

Just a week and a half after recovering from the last flu virus, my daughter took ill with a high temperature and more flu like symptoms. I am back in that space of fear and worry once again. She doesn't want to eat. She had already lost a kilo gram of weight from the virus a couple of weeks ago and now I am tube feeding morning, noon and night again just to keep her weight steady.
Her temperature continues to remain high and 6 days after taking ill, there seems to be no break in her symptoms. I am longing for a change in her condition. I am getting used to sleeping on the futon mattress in her room, and that worries me. I don't want to be there listening to her every breath and panicking when I can't. I am not sleeping deeply, her cough and snot filled snoring keeps me half awake. After six nights of nearly no sleep I am starting to feel the paranoia and exhaustion kick in. As a Carer you draw on a reserve of energy that you never knew you had. I look back now over my first three years as a Carer and wonder how I ever coped without collapsing. There were times when I came close. I am aware now that the reserve I once drew on is no longer there. It takes me longer to recover from long stretches of no sleep. Mentally I become more depressed as I feel locked in to the cycle of sickness. When will a break come? 
When you are a Carer and the person you care for becomes sick your fears rise to the surface. Please let me stay well enough to keep caring. What would happen to my kids if I couldn't care for them? What if the Care I give is not enough to keep this person alive? I talk to other Carers and we all go through the same fears. Most of our fears relate to the future, yet the future is unknown, but still the fear is none the less there. Sickness is unpredictable, death for us all inevitable and in between we try and live life the best way we can. Staying in the present moment can be hard when that moment is filled with the suffering of yourself and the person you care for. It is the moments of love and tenderness that keep us present with the now. For now in this moment my daughter is asleep her temperature down for an hour or two. In this moment I get to sit and soon sleep. The present moment is without fear, 

Friday, 5 February 2016

I Thought I had Stopped Grieving But I was Wrong……

It’s the 5th of February and I feel like I have just lost January as it was a blur of sickness. My role of Carer intensified when my children came down with a flu virus two weeks ago. A week in to the sickness and I felt quite proud of the fact that I was still standing despite the fact that my husband and kids had succumbed to the virus. Of course, I think my body was just living on exhaustion and adrenaline while I moved from child to child in the middle of the night. Checking temperatures, administering inhalers and Calpol and catching half an hour stretches of sleep between each child’s cries for Mummy.

My positive attitude didn’t last long and by day eight of everyone’s sneezes and having two five year olds coughing in my face I started to feel really rundown. I succumbed to the flu symptoms five days ago. Bones aching I dragged myself around the house because of course a Carer’s job is 24/7. Syringes still needed to be washed, enteral feeds still needed to be given then the added addition of antibiotics for my son who now had the complication of a chest infection.

After 14 days of caring for others and very little care for myself I cried myself to sleep last night. It doesn’t happen very often but sometimes it’s just too much. My daughter had returned to school this week while my son continued to remain at home needing care. Both children have special needs, and both have very different needs. My daughter needed to express herself by knocking over a coffee table after school yesterday. When asked to go to her room she sat in there screaming, spitting and kicking the door, then came out laughing, unable to understand that knocking over a table was perhaps a bad decision on her part.

With every new behavior my daughter displays I start to feel the fear creeping in, and in an attempt to try and understand I start to think through and process every diagnosis we have. Why can’t we just have one condition to deal with, why multiple problems that tear away at all of our hopes for the future? Last night I found myself searching the Internet again. Doctors and Specialists like to roll their eyes the very second you mention you found a study on Google but quite frankly I get sick of being kept in the dark. More often than not a Google search is the only way to get the answers you need to help you get access to the appropriate health services. Sometimes you stumble across articles that suggest outcomes that you might not want to read such as ‘this condition will not improve with age’. Last night I was confronted with a parent guide that broke me apart, I realized I really hadn’t left the grief stage yet. The web pages author wrote:

 Being told that your child is diagnosed with a serious health issue or disability can be devastating. You are filled with fear and uncertainty. The diagnosis often leads a parent to experience the same stages of grief as when you lose a loved one. The first stage is denial. How can your child have this? Did you do something wrong during the pregnancy? Are your genes “bad”? Denial is often followed by guilt or anger. One may also experience depression. These responses are all normal, and often necessary, in order to deal with the diagnosis and come to terms with the “new normal” that will encompass your life.’ *

Denial is something that most Carers will happily admit they go through on a regular basis. But when my children were born premature I thought I was quite realistic about the outcomes. After all you are kidding yourself if you think they are going to come home with no lasting after effects. Medical science can save a life but it can’t cure the disability.  I see now that part of me is in permanent denial, I don’t want my kids to go through this, and I do not want to have to either.  I wanted normal, I do normal really well, and I can cope with normal. But what is this ‘New Normal’ the author of the quote speaks of. Shit! I have to do a different ‘`Normal’

I wonder if my attempts at trying to get back my working life is part of the ‘New Normal’ or is it part of my denial process. Can I really juggle some precious creative time for myself as a writer and photographer while my number one priority has to be as a Carer?
To me if I don’t have some sense of the life I had before becoming a Carer then I have given up on myself. Given Up! No I don’t do giving up. I can’t just be a Carer, I can’t. There I said it out loud. So perhaps it’s a combination of anger and denial. Yes I’m angry, who wouldn’t be angry when they have to watch their child suffer physical and emotional pain from their condition.
So here I am, five years on and I am still grieving, and with every new symptom and every new diagnosis I will grieve a little bit more. It is clear I am a long way off from finding a place of acceptance but maybe that is part of a longer journey than I had imagined.

So how do I cope? How do I get up and carry on when things feel like they have fallen apart? I can hear an army of Carers saying the same thing. And I am not sure any of us really have the answer.
I search my faith as a Buddhist for the answer on a daily basis, sometimes I find some ground to hold me steady for a while, sometimes I don’t. *Nembutsu rising through my body strengthens my heart and mind. Nembutsu helps to navigate the course of my existence even when I feel I don’t know the direction I am going in.

There are some Buddhist schools of thought that when things fall apart we are on a tipping point, we can fall in to the trap of trying to escape the suffering we feel. We can lock ourselves deep in to the cycle of Samsara, a hopeless cycle of suffering and pain or we can sit with our situation and acknowledge what has happened.

As we sit with it, we should never for a moment make our circumstance solid. Life is ever changing; my child’s health is ever changing. I should not depend on anything other than the moment I exist in right now. I can read all I like about medical conditions and symptoms on the Internet so as to prepare me for future problems but I should not dwell on what might not happen. Every time I feel myself sinking in to the uncertainty of the future I need to pull myself back to the now. 

When we are in a state of grief it is all too easy to fear the future, and reminisce about the past but what is important is the present moment. It’s not easy living with the shakiness of a grieving heart, or the fear that lives within your stomach, but you can’t hide from it either. Live with it and you find yourself in a process of awakening. Life as a Carer pulled the rug from under me but it also brought with it a chance to see the world with a deeper understanding.

So while I settle in to my ‘New Normal’ those of you that remain in the old ‘normal’ get to keep your rugs for now. But just remember that one day your rug might get pulled and then what do you do? What will your ‘New Normal’ look like? Don’t wait for the rug to get pulled before you think about a path to awakening, the time to learn how to relax amidst the chaos as well as the calm is now. Find a path.  I am not suggesting everyone take a Buddhist one, but what I am saying is that one day in your life you will be faced with suffering and the direction you choose to go in will determine both your future pain and your future happiness.

Further Info & References

* For those of you who don’t know, Nembutsu is a form of chanting that we practice as Pureland Buddhists. At the start of a lot of Chants you will see the word ‘Namo’ which is translated to mean ‘Calling out to the Buddha’.  This is a simple way of expressing gratitude to the Buddha for all that we are. In the English traditions of Pureland or Amida Buddhism, our chanting takes the form of ‘Namo Amida Bu’. This is recited over and over again.