A day in the life of a carer.
This one is for all the incredible careers out there, without whom many of us wouldn’t be here. It can not be said enough, thank-you. No matter how deep in the darkness you are, I can tell you from my experience (and that of many of my friends) that underneath whatever words and actions come out during the dark times; the love, care and understanding from those around me did reach me, it did make a difference, and I was always grateful. I just couldn't always express or show it, as many of the battlers out there may not be able to right now. Staying in the fight with someone no matter how hard it gets is the greatest gift you can ever give.
Introducing my mum, the hero of my story.
Author: Lisa Brick
The sun starts coming through the curtains letting me knowthat the night is finally ending. Night-timeis no longer about sleep, but about achieving enough rest to get through thenext day. I have done this before, but thenit was with my babies and their problems were simple; feed, burp, change,cuddle. Now I am caring for my increasingly ill daughter and today is not goingto be a good day. Most nights now, I am sleeping in her room. I would be in bed with her, but her body isso fragile, and she is in so much pain, it is hard for her to be near me. I can easily lose track of the days now andof what life was like before. Before I got a call I never expected to get.
On a Monday, what seems like a lifetime ago, while at work I answered a call from an unknown number. On the other end of the line was the voice of a very calm and measured woman. She told me her name and that she had my daughter, Simone, with her and I needed to know she was having some serious problems and that she had an eating disorder. I think I thanked her for telling me and asked her how Simone was. It’s funny how polite we can be when dealing with something so out of left field, so unexpected. Or maybe it is just me trying to block out what she was saying. I couldn’t tell you what she said for most of the rest of the conversation, my mind was racing. She can’t be serious, not my daughter. I remember the slight panic and thinking I needed to race home now and just hug Simone until it was all better, or at least until I knew what to do. So started my journey as a carer.
The morning reveals that Simone is obviously extremely illtoday. Not that any day lately has been ‘good’ but today I have to help herwalk to the couch, she doesn’t have the strength anymore. It has become increasingly harder to get foodor water into her, so I decide we need to see the doctor and for once Simonedoesn’t argue. She must be really bad!
I help her into the car and walk her to the doctors surgery. The look on her face of pain tells it all. The GP we are seeing today is one of my favourites, who has just come back from being away. It was a blessing to be get an appointment with someone I knew and trusted. We walk into the room and the look on his face again says it all. When he last saw Simone, she was a bright, vibrant adolescent. Now before him was pale image of that girl who couldn’t even walk unaided. He didn’t really need to examine her as it was obvious what she needed. He did do the minimum which brought tears to Simone’s eyes just by touching her. With a worried expression he quietly said, ‘I will write you a letter and you are to go straight to emergency’. No real surprise for me there, and I said we would go to Monash as that is where she usually goes. I still can’t get used to having an ED we usually go too.
At least we didn’t need an ambulance this time, Simone doesn’t like advertising how sick she is. We arrive at Monash ED and with the GP letter we don’t wait long as they decide she is eligible for a paediatric bed because they are pretty quiet at the moment. The nurses and doctors are great, as I have usually found in ED. It is quickly established she needs hydration and a drip is set up. It also includes some pain medication, so Simone is finally looking a bit more relaxed on the bed. We remain in the treatment room until her condition improves enough to be moved to a cubicle. We will be here for about 5-6 hrs today while she is rehydrated and eats some food. The fluids are intravenous so she can’t say no to them, but the food by mouth is a problem. I remember a nurse who took a particular interest in her today and sat with her and talked to her. I was very grateful as it gave me time to get some food and have a break myself. Getting a break is not something I am used to as we never leave her alone at home, and I didn’t want to in the ED either.
It really is very strange being a carer and a parent. I want to be a parent that is encouraging andtrusting, but with Simone the illness is too strong and I don’t trust that atall. It is like Simone and I arefighting this battle together against her illness and when she is not strongenough, I have to fight for both of us. So, as her carer I make sure she is never leftalone with her illness.
After a few hours Simone is looking and feeling a bitbetter. Then the discussions begin aboutwhat to do next. I am desperate for herto get an eating disorder bed, but there are only 4 in the hospital and sadlythere are none available. It is sad tothink that there are girls (usually), worse than her. The nurse, who has been sitting with her whenhe can, is talking to her and giving her some great words of encouragement. I hope she is able to hear them. They are what I am trying to say every day. Weprepare a plan to go home and contact our doctors again for moremonitoring. It really is amazing howhard her body is fighting to keep her going despite what is happening to it.
We make it back home to the couch. My routine of constantvigilance continues. I do at times feelthe weight of responsibility knowing I have to ensure she gets her medicationswhen she needs them, including assessing when she may need extra or if I needto call the doctor. I am in the constant battle of monitoring when to feed her,and how keep her distracted or engaged in something as much as possible so thatshe can get some quietening in her mind. As her carer and parent, I have to try and work out the best help andsupport I can give her at any moment in time. This requires all my attention,but I still feel helpless most of the time.
Having not had any luck at the hospital, it is back to the psychiatrist. Sitting in the waiting room flicking through another really old magazine, I am thinking I started this one during last week’s appointment. I never really read them; my concentration is not that good anymore, not enough sleep. I stopped bringing books ages ago as I would keep re-reading the same pages, unable to take it in. I don’t really mind waiting, it is a bit of quiet time where I can just sit and try to relax. I don’t have to think about what is going to happen over the next hour or so. Simone is safe with her psychiatrist. I do wonder ‘what is she saying?’, or if she is speaking at all. There is a slight frustration after an hour appointment when you find she has said nothing and that is an okay outcome. Oh, how I wish this was easier to fix! To me it is like trying to put a jigsaw back together blindfolded.
I do get my turn at the end of the session with the psych. Sometimes I get asked, ‘how do I think she is going?’. Never an easy question to answer. Otherwise it is just 'here are her medications for the week'. She has not been well enough to look after them herself for some time now. I am told that today she is finding it difficult to quieten her mind and her negative thoughts. The psych is worried as well and gives me his mobile number. This is never a good sign, but I appreciate his trust in me to use it appropriately. Knowing we have his support is comforting. It looks like we might be in for a rough night again. He talks about contacting her psychologist and investigating how soon can we get Simone into an eating disorder program.
A session with the psych is exhausting for Simone so on the drive home the car is quiet; no talking is the rule. We might stop to get some food for dinner, during which Simone usually sits in the car. I am happy with that as she usually stays there, and I am not left wondering where she is. Tonight, we will look at where she and I will sleep. Either I will be on the floor in her room or we will move downstairs to the spare double bed. I am grateful her father saw the wisdom of moving her to the bedroom closest to ours some time ago. There was a lot of noise, complaints and tears when we did it; her eating disorder was not happy with the supervision, but we insisted, and it was the right decision.
We get home and set up some mind-numbing TV show for Simone while I quietly get some dinner for the family and do some chores, always keeping her in sight. We try to keep things as normal as possible for the rest of the family. We chat and talk about everyone’s day as much as you can with teenage and young adult boys. It is made a bit easier as Simone attempts to eat her dinner on the couch; she doesn’t like sitting at the table. There are too many people, and really the chairs cause her pain when she sits on them anyway. The fights about food are essentially gone now, she doesn’t have the strength to fight, but she doesn’t have the strength to eat either. It is a blessing and a curse not to fight as it shows how strong her medications are and how down she is.
We survive another night and the next morning I get a callfrom the GP. He expresses his sorrow atseeing Simone so sick and how sorry he is that he didn’t know. It is only a short conversation but one Ireally appreciated as his words and him taking the time to call gave me such afeeling of support. Simple gestures canbe so encouraging.
By the afternoon Simone is not in a good way and is virtually in the foetal position on the floor, unable to get out of her own head. It is time to call the psychiatrist and get help. I am grateful he answers straight away, almost like he knew I would call, and he instructs me to increase her medication dose. It will essentially sedate her until this episode passes. It was a painful relief to see her respond to the medication and fall into a fitful sleep.
It wasn’t long after this episode that we had a miracle happen and we got word that Simone had been accepted into the Butterfly Day Program. We had only been waiting a couple of months, compared to the six months we had been told we would be waiting. It was like all our prayers had been answered at once.
How did I and the family manage to survive this time? I am eternally grateful for the wisdom of her first psychologist, who managed to get Simone to agree to tell us about her illness and allow us to be involved with her treatment team. That is not always the case as eating disorders generally happen in secret. Knowing meant that we could tackle the problem together, as a family. Simone didn’t want anyone to know about her illness, but we immediately said ‘no, that is too much to ask’. We were struggling ourselves with what this meant and needed the help of family and close friends around us. Simone reluctantly agreed and it was one of the best decisions we made. Over the years this meant our workplaces understood when we couldn’t be at work, and our family and friends were able to check in on us and support us when needed. When I was really struggling, I knew I had the thoughts and prayers of my family and friends backing us up.
Our openness to talk about our struggles led to us having some amazing conversations with other people and discovering how many others in our community were also struggling with mental illness in their family. One carer had been struggling for 15 years without telling anyone as the sufferer asked that no one be told. It was a visible relief for her when she found someone who understood and could share in her struggles, and I admired her grit and perseverance for dealing with this struggle for so long. What is it about mental illness that makes it so hard to share the story and pain? Carer’s need to feel free to have more conversations about their lives and struggles too!
Changing from a parent to a carer puts you on a steeplearning curve. I found myself dealing with a child who has almost become astranger to me. All my previousknowledge about behaviour and language was no longer appropriate. This was an entirely new situation and I hadto learn a whole new way of communicating and dealing with a child I thought Iknew.
Some of the best advice I got was to speak of my child and the illness separately. Her illness didn’t define her, and it was the illness, not her, who was wreaking havoc with our lives. Our beautiful daughter Simone was still here. Our job was to love and care for her while we battled this illness together. It is a long journey and definitely a dirt road with many pot poles and dead ends. My hope and prayer that sustained me was that each day we battled through with Simone was another day with her still here, and another day closer to beating this damn thing!
So, welcome to a day in the life of my mum during my battle with Anorexia Nervosa, as told by her. We don’t have many photos of this time. It was just our family, struggling to get through each day, while my illness essentially held mum and I captive within the four walls of our home. I don’t remember much, because my physical condition was so bad. What I do remember is the pain. Daily physical pain that reminded me each morning and night that I was dying; and the mental pain of trying so damn hard to fight, but not being able to.
When people tell me now how strong I am, I think back to this time. I was not strong then. I had truly given up. I was both comforted and petrified by the feeling that my body wasn’t going to survive much longer. On the days Mum writes about here, I remember how the pain and worry in her face, which usually helped me fight a little harder, had lost its meaning. As I was sent home from the hospital that day I resigned to the fact that I had lost my fight.
As a result, Mum held all my hope, strength and fighting power, on top of keeping our family afloat. My younger brother was in year 9, and my two older brothers were around home too I think, although I wouldn't remember. I don't really know what was going on with the rest of my family (I am one of seven kids), but knowing mum she was always trying to be there for everyone. This is after already surviving the period where I would yell and swear and curse at her just for trying to help; sometimes throwing food at her in fits of desperate and confused rage. She would take it all, with a bit of yelling at first but over time she learned to calmly tell me that she wasn't going to engage with my illness. Instead, she would look at me and say 'Simone, don't let the illness win. I am here to fight it with you'. That made it two very tired, yet equally determined women against one illness, every time.
Also, I still remember the day I found out mum was reading as many books as she could find on eating disorders and any of my other illnesses along the journey. She did so much to educate herself on how to help. The ill part of me was always mortified, as it meant she would learn many of my secrets. But the feeling of love from the confirmation that she cared enough to do that ran so deep in me even then, and is something I will never forget. I don't think I went a single day in hospital without mum or dad visiting, even when I told them not to. I could offer so, so many more examples but essentially every struggle I have written about, they were there, struggling with me.
It is incredibly humbling to know that left to my own devices I would not be here today. That is the reason why every day I am alive is truly a gift that I want to return to the world, and mostly, return to the woman that saved me.
Every day that I live is a gift to my mum.
Still We Rise.