Tuesday, 11 March 2014

Life on Hold….

Wills is now well and stable but yet we still face many weeks in hospital. William's bowel is currently unable to get all the nutrition he needs and so we are facing a period on TPN, total parenteral nutrition - a feed delivered straight to the heart and into the bloodstream via a catheter in the chest (Hickman or Broviac Line).  This is a relatively complex thing to do at home and the process to set it all up takes time. We are in a hospital away from home and the arrangements can't even start to be made until we are in our local 'intestinal failure/TPN centre' in London. We should have transferred there last week but William came into contact with chickenpox on the ward and so is in isolation in hospital. There were no cubicles available for transfer so we've literally spent the last 10 days in a strange situation of having our lives literally on hold, in a kind of limbo transition between being treated here for an acute situation which is now as resolved as it well be and moving to a new hospital for arrangements to start the funding applications, planning and training for home. When we so arrive in our London our lives will continue to be on hold until we finally get home for good, although we do plan to be at home for as much of the day as possible.

Having a life on hold is a strange feeling but I've been doing a bit of thinking, reading and research and it's not really that unusual in they cycle of our lives to have times when we feel that life, or at least aspects of our life are on hold. I remember travelling back home from university on a coach, watching people out of the windows going about their usual life and feeling I was drowning so much in revision and exam stress that I was never going to live what I considered to be a free and normal life again. Transitional times in our life can be relatively short. I only had a couple of months of extreme 'exam stress' and then I was free to enjoy Glastonbury and the rest of my summer and start a new stage of life doing a PhD.  A transition that has been written about quite a lot is that to widowhood. There are some overlaps here with the situation I am finding myself in right now as many 'widows and widowers in waiting' are carers for long periods of time, having to place their own lives on hold for a while before their spouse passes away and they pick up the pieces of the life they have left. Other transitionary periods include waiting to conceive for couples desperate for a baby and, indeed, pregnancy.

We've been in hospital now for over two months but the earlier stages of this didn't really feel so much like a life on hold for me as William was more unwell and there were constant tests, changes in treatment, a period with a severe chest infection/pneumonia and surgery. It is now, when he is well enough to go home but we are facing a change to the life we live there, that we are in a prolonged transitional stage. I have come across some suggestions of things that we can do to help ourselves to cope with prolonged transitions.


Bernice Neugarten is a psychologist and one of the first to study adult development and ageing. She found that many 'widows in waiting' rehearsed in their minds the life they would live as widows in preparation for the transition.  Mental Rehearsal is something I often find myself doing for things like music performances and it's pretty effective too. As a freelancer, work comes to a bit of an abrupt halt when we're in hospital, especially when it's directly following Christmas when things slow down anyway. I kind of have a blank piece of paper to fill in my working life now and I definitely think it would be a good idea for me to plan and rehearse the kind of ways I'd like to fill it.

Go to Plan B

Some transitions cause you to reshape your dreams and go to plan B. I'm a stubborn woman and don't give up on my dreams easily. Of course, there have been things I have had to abandon. I couldn't hold down a traditional 9-5, or any kind of job really, that involves me being in a specific place at specific times because I can't guarantee I'll be there. I was at the start of a new and exciting theatre project when Wills got sick this time and I've had to shelve that for a while. It certainly won't be abandoned but I do know that plan A for it isn't realistic right now so there will be an element of shift towards at least a revised plan A. Plan A.1 I guess.

Acknowledging that life is on hold

Gail Shelly writes lots of books on passages and transitions in life. I particularly like her theory that we enter a new stage in adulthood at around 45, a stage full of new opportunities. That certainly helps me replace my feelings of 'I haven't achieved enough' with excitement for the things I still have left to do. In one of her books, 'Passages in Caregiving: Turning Chaos into Confidence' Gail says that labelling what it is you are waiting for can be rewarding. It is good for us to acknowledge that our live is on hold and allow ourselves the space and emotions that brings. This is an important point for me as I am constantly trying to do the things I would usually do in life when I'm often too tired, overwhelmed, emotionally drained or all of the above to do them properly. So, I fail, feel frustrated and disappointed in myself and less able to cope in general and the cycle continues down…

Live Life As Fully As Possible

Of course, during a transition when we feel our life is on hold it is only parts of our life that are on hold. We are still alive and breathing every moment of the days we are living in this stage and need to live those as fully as possible. I have some wonderful and precious times with William when we are in hospital. We have all day to talk, make things, play and while I miss his sisters hugely, these things are there to be treasured and it's important they are. Right now, he is with his dad (we're no longer together,  how you manage an ex (and his new wife!)  amongst all of this is worthy of a blog post all of its own), the sun is out in Birmingham and we only have a few more days left here so I'm off to enjoy a little me time. There will be precious little of that when this transition is over and the rest of my life is no longer on hold….

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