Tuesday, 16 February 2016
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
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.