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The Royal College of Psychiatrists Improving the lives of people with mental illness

I know in my heart that my dad is right behind me

Part 5 - December 2009 

The new year of 2010 is just days away. Neither horoscopes nor the media’s news analysis can fully predict what will happen in the months ahead. This time last year I had no idea that my dad was terminally ill, cancer pressing against his spine causing him to become paralysed by February. He was living with mystery symptoms until it was too late for medicine to do its usual good work. But life changes without giving us a decent notice period - even if we sit still circumstances will shift about around us. And when they do change we have to cope and do our best for each other as human beings, friends and family members.

All I know about 2010 is that my dad is no longer alive to see it, dying last July. He was deprived of the chance to experience anything of the coming 12 months - a year that must be kinder since how could it be any worse? I hope that he is in a better place, a spiritual realm where he can look benevolently on my progress in life. He will approve of all I have been doing since his death. But he would now want me to bring my immense distress over his passing to an end. 

Last year taught me more than all the lessons which could be learnt within a normal 10 years. My year in review for 2009 is very personal, one of highly expressed emotion and scenes that were bleak. But to come out of this I learned that I could give affection and put someone else first. I experienced terminal illness at close quarters. Despite knowing mental health conditions well – both personally and through meeting other service users and survivors – I had never encountered end-of-life care. Another close relative had been given a cancer diagnosis and treatment with radiotherapy in the past. But I always knew that was treatable, she would be better soon. My dad’s prostate cancer was a different story and I understood that from the minute of hearing his diagnosis. I had to face it, to not make this crisis ‘about me’, and see how I could make his situation bearable for longer. What I did not expect was to become an advocate for my dad, to care so deeply, to listen so carefully and ultimately to survive without him.

I now realise that there is more to life than mental health concerns and wider issues beyond merely existing each day thinking there is always time to spare. My own awakening in life has made me wiser and more compassionate. I respect that members of families grieve differently and I hope that I have been sensitive to the needs of significant others. I do not feel bitter about my dad’s death as a tragic event following half of my life battling mental health problems. Instead I believe that all my experiences allow me to have a different perspective, one that I hope to help others with through sharing where needed.

It is hard to live in an area where no-one has met my dad. Some people I meet are not attuned to grief and do not see its significance – I sometimes wish they would take the time out to learn before they also have to go through it one day. My dad’s absence is still obvious; going to certain places will never be the same without him; tea and coffee cannot taste the same as when he made it. I do not hear about his latest movements and outings anymore. I wish I could have discussed the recent snow fall with him.

I spent Christmas Day on my own with no Christmas food or television programmes in sight, in my pyjamas with unwashed hair. I longed to spend it with my dad or even to be able to phone him as I did last year. I did not feel fully prepared for how long the day felt or my emptiness, for the tears that never quite came, for the strong memories but also the boredom where I felt like doing nothing. I wanted to be anyone but myself, even believing that being part of a large family prone to falling out would be preferable that day. I envy people talking about family Christmases, but I appreciate that they may not be ideal. I knew Christmas was almost over by the early evening so felt the heaviness lifting from my body and mind.

Bereavement has taken its toll on my mental health. I recognise this and a need to rebuild my reserves again. I am more likely to catastrophise. If I hear that one of my small surviving family feels even slightly ill I start to picture having to visit another hospital. I find it harder to settle and concentrate now. I tend to ration what I can eat only to find that I am lacking in energy. I am scared of a new year as well as trying to be hopeful.

Today I start writing in my 2010 diary. I have a 2009-2010 academic year diary which would last another six months, but it is better for me to start afresh. I no longer need to write in the back of the diary the contact details for the hospice, or the community nurses previously looking after my dad. I bought new clothes in the January sales so I do not associate all my clothes with the past (but I also have to watch my spending from now on). Early in 2010 I am starting to do some service user involvement, mentoring student nurses within my mental health trust. I have a new friend I ‘met’ through the Macmillan online forums who is in a similar stage of bereavement. Recently I put myself forward to be a media talker for the national Prostate Cancer Charity in case I can help raise awareness of this disease.

I will continue to see my community psychiatric nurse in 2010. She has said that we will still be able to talk about my dad at any time. We will be looking more at other areas of my life again. The theme of mental health recovery has always been strong within our work together. But where family crisis and bereavement take place, there is a need to focus on these areas. I feel that the way I helped my dad during his final illness owes much to the past therapy with my CPN - a remarkable result to come from this work. I do believe that it is a shortcoming that only ‘outcomes’ such as having a job and home are captured as data for use by NHS mental health commissioners. It seems more important that outcome measures reflect the good we do for others rather than service costs saved or targets hit. You cannot put a price on being with someone when they are dying – and it is something I did for my dad but also for my own recovery.

Six months on from my dad’s death I do not feel quite ready to let go yet. I have used the cancer drop-in centre over the Christmas break so that I was less isolated at this time of year when grief rises up again. This centre will still be there for times I want to call in; - many centre users go on to become volunteers which I could consider at some future time. I sometimes cannot stop thinking about my dad in the hospice or in his care home. I still allow those thoughts, and my heart aches, but at least these events are in the past. I can see ahead into a new year and just hope for peace of mind. I know in my heart that my dad is right behind me in whatever happens next.


Alex

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In this section of the website we publish personal contributions that focus on peoples' experience of being unwell or on their recovery. The views expressed in these articles are personal. They do not necessarily reflect the vews of the Royal College of Psychiatrists.