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/