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Everyday Feels The Same

How do you feel right now in this moment? 

In all honesty, I feel like we are living in a Groundhog Day. Every day feels the same. Due to the excessive distance and not having regular updates we do not know what is happening one day to the next.

I do however feel comfortable knowing that my daughter is in a safe environment, although during her medical team meeting we were advised that she had attempted to end her life again.

I have a sick feeling in my stomach constantly, and live in fear of a phone call from the hospital.  It is honestly tearing me apart when I stop to think about things.

I want people to know what it is really like.  I want people to know how it feels to be a parent and not the one who is suffering.  My feelings and passion to make a change are fuelling me to be open and honest to the world about all of this.  I don’t need to be a face to this, just a real parent living through this living hell. I want to help others.

How has your daughters eating disorder affected your family? 

Emotionally – we are all feeling immense strain to keep on living as a normal family.  We have a younger daughter who is pre-teen and needs time and support as well.  We are focusing on her as much possible, as she shows signs of Anxiety and misses her sister desperately.  My wife has been diagnosed with a returning Depression and has been off work for the past 10 weeks.  She finds it very hard to sleep and to keep positive.  I have been trying to keep everything together to support everyone impacted by this. I was very emotional at the beginning and would cry quite a lot when I relieved the moments that she tried to end her life.  But now I have managed to move forwards and switched my emotions to power a passion to help more people through the work I do.

Financially – We are lucky that we are able to support the current challenges of our daughter being so far away.  But we do recognise a significant expense when we travel to see her.  We try to economise as much as possible by driving and staying in cheaper hotels, but there is no contribution or support for us financially.  At the moment, each trip costs between £150-£200.   We are trying to see our daughter once week, and with the fact that I am unable to work on the days we travel to see her, overall this is costing us around £2,000 per month in travel costs and lost earnings. 

Relationships – We are very lucky to have friends who are there to help support us. But because of the illness trying to drive divides between everyone it has created tension and conflict within our family. Where normal families would all be supporting each other, my parents have been on a witch hunt to find the people to blame for our daughter’s issues, and this is creating a toxic relationship that is not necessary at the moment.  My focus is my daughter and making sure that she gets better.

How much support is there for you and your family? 

We are attending Family Therapy as part of our daughter’s process to recover, but even that is becoming harder because the therapist is hardly ever available on the days that we are able to see our daughter. It really is limited in its impact as we have to attend the sessions in person.

Without the support of our close friends we do not get any additional support as a family.

What are the biggest frustrations with the system, other than your daughter being 200 miles away?

It does not talk to each other.  At every step during our daughter trying to end her life to being sectioned under the mental health act, many people asked the same questions.  It got to the point where she would look at me and ask me to tell them.  We had interactions with the following medical teams that asked the same question: General Practitioner (GP) Ambulance Dispatch, Paramedics, Accident and Emergency Doctor, Paediatric Ward Doctor, Eye to Eye, CAHMS, Eating Disorders Team, Social Services, Mental Health Act assessment (3 times), Plus her current mental health support team.  

We had to wait over 2 weeks for the Eating Disorders team to find a bed in a mental health hospital.  Whist our daughter was in the general hospital it was very clear that they were not suited to support her mental health needs.  As a sufferer of Anorexia, she was constantly asked ‘would you like something to eat?’ and told, ‘if you don’t eat anything you know you won’t be able to go home’. The general hospital is not suited for supporting mental health challenges.

When a bed became available it was the closest bed, being over 200 miles away from home.

How much communication does her treatment team give you?

We have been promised weekly updates on our daughter’s progress, but unfortunately during the 10 weeks she has been in hospital to date we have received 3 updates. We have made numerous requests for feedback and a structure, which are always acknowledged but nothing ever seems to change.

Just a week ago we were with our daughter’s unit doctor and I asked in his opinion how did he feel things were going, and he responded with ‘I don’t know’, it was very dismissive and I actually found it shows the lack of care and support that this individual has for parents or carers.

We are also concerned with information that has been shared between the different disciplines helping to support our daughter.  On an early call a mistake was made about our marital status saying that my wife and I divorced in 2017.  This is a mistake as we are very much still married. There have also been other communications that do not correlate to the reality of what has happened.

Do you feel that the treatment your daughter is receiving is actually healing her from the inside, or is it just a feeding farm? 

In over 2 months we have seen no improvements in our daughter’s health.  If anything, things have actually gotten worse. She is still feeding on an NG tube, and has been seriously self-harming by cutting her arms and hands.  This was not something that she would do previously. On a number of occasions where we have stayed overnight in a hotel and returned the next day to see our daughter she refuses to see us, and we have to make the 4-hour drive home without even having the chance to give her a hug or a kiss.  Often we are in a room less than 10 metres away from her and cannot even say goodbye. 

She calls home and cries about missing her friends and family, and really does not want to be so far away from home.  She does not feel that she is being taken seriously by anyone. It breaks our heart to hear our daughter in so much distress. 

Your daughter told you that she could no longer continue to live with the noises in her head. She wanted to stop living but not die. How did you feel when she said “Daddy please let me go.”

It makes me upset to live through that experience again.  But the reality is that no parent could ever be ready to hear their own child say that they want to stop living.  People often say that they have a broken heart.  This for me shattered my heart.  I actually told her that this was not going to happen.  I made her pinkie promise me that she would bury me, and I would never bury her.

What would you say to your daughters eating disorder if it was sat in front of you?

It would be a simple, please Fuck off out of our lives and leave us alone.  I actually used to shout at the illness and tell it that I hated it.  I always made sure my daughter knew it was not aimed at her. After one CAHMS ED session I was so frustrated with the illness that I shouted at it in the car and told it to get out.  It certainly had an impact.

Where do you find peace – can you feel any right now?

I find peace in the fact that I talk about what is happening.  I am very open about not feeling ashamed about what is happening to my daughter.  But I am always conscious that I do not want to tell everyone we know on social media at the moment who we are while she is still fighting this very serious illness.   We trust the people who know our story to keep it private.

My friends and my wife are good at making sure I take time for me.  I am actually writing this whilst away for a couple of days alone in a cottage in a forest getting some rest and relaxation.

Christmas is going to be tough for you…

It certainly is. This is made even harder knowing that this is our two daughters favourite time of the year. We are planning to go and spend time at the hospital on Christmas day and hope that we can try to make it special for both of them.  Just being together as a family is going to make it Christmas for us.  Both my wife and I are finding it very hard to get motivated to celebrate Christmas this year, but for our girls we will make an effort to make it special.

We already know that there is no way that she will be able to come home on Christmas day, and we know that this is something that upsets her terribly.  Most of her friends in the hospital will be going home on Christmas day, so she will be left alone for much of the day. Again, this really does expose the challenge with displacement of patients around the country, at a time where family and friends are so important.