Chronic sorrow by Sarah Clayton & Rose Harwood

Chronic sorrow – what might help?
By Sarah Clayton

Sarah Clayton

Sarah Clayton

On the 5th September 2007 my world changed forever. This was the day that I was told that my beautiful, funny, clever six year old little girl had a brain tumour. The day itself is etched into my memory, the room they took me to, the feel of the nurses badge scratching my cheek as she put her arm around me, the phone call to my mum trying to ask her to bring new pyjamas for Bee with a button up front as they wanted to operate on her in the morning.

The following 12 months were horrific, the surgery, the radiotherapy, the chemotherapy, the burns, the infections, the permanent hair loss, the social isolation, the sleep deprivation, it went on and on. We are just over 6 years in to this journey, Bee has passed the magic five year remission mark and officially she is cured.

Cured. The outcome I had prayed for, the result I had bargained with God for. I was desperate for her to survive, I knew that her treatment would have serious long term implications for her health and her ability to learn and I knew that we would manage, so long as she stayed with me we would be OK.

So when did I become aware of the sense of loss? Of the sense of guilt that came with daydreaming about what might have been if that single cell hadn’t gone haywire? Of missing her while sitting in the same room? I have no idea. What I do know is that I am aware of all these things, acutely aware. I have struggled with them for so long they have become as much a part of me as my eye colour.

Reading Rose Harwood’s article ‘Chronic Sorrow’ brought me the most powerful sense of relief, it felt as though someone had peered into my deepest thoughts and helped me understand them. It turns out that I am normal, that these feelings I have hidden for so long are felt by others too. They will never go away, I will never be rid of them but to be honest that’s ok – so long as Bee is still here I can live with them. I want to share my experience in order to raise awareness of ‘Chronic Sorrow’, how it might impact on people you work with and a couple of ideas of what might help.

Rose introduced me to the concept of ‘Triggers’, of situations that reignite the sense of loss. I know my triggers inside out and I do all I can to prepare for those that I know are approaching. There are obvious ones, certain songs (I turn the radio off), certain places or people (I try to avoid them), her starting secondary school (I plan meticulously and it will be OK) or watching her clumsily try to develop friendships with others her own age (I’m working hard to create a circle of support and do the best I can). Then there are the less obvious ones that other people might consider irrational but are very real to me. For example there is a tinted glass window in the MRI room at the Children’s Hospital. I can’t look at the window because if I do I will see the faces of the radiologists glowing in the light of the monitors on the other side. I once looked and saw the face of Bee’s consultant who had been called down to look at her images, for the following hour locked in that noisy, clinical room holding her little foot as she lay perfectly still in the scanner I knew that the cancer was back and that she would die. I was in fact wrong but will never look at the window again and that way I will control my anxiety and she will be safe.

The more I think of ‘Chronic Sorrow’ the more I understand my need for control. I am all too aware as a parent that there are things completely beyond my control. The things that are I guard fiercely. I cannot control the future and I find it a scary place, full of inevitable change. I would appreciate practitioners understanding this fear and being mindful of the following when helping us look to the future:

1. Be kind. It costs nothing and your words may well be remembered for years to come.
2. Avoid assumptions. Don’t assume that I’ve had enough time to accept things, I haven’t, I probably never will, but I am perfectly capable of getting on with things.
3. Be professional. It is not your job to judge me; your job is something completely different so please get on with doing that as effectively and efficiently as you can.
4. Be mindful that your perception of a situation might be very different to mine – I was told I must celebrate the end of Bee’s treatment, instead I begged her consultant to give her more chemotherapy because stopping treatment meant we were doing nothing.
5. I will only ask for help if I need it. By the time I come to you I will have exhausted all other options.
6. Remember that you chose your profession, your field, your speciality. I didn’t. I was doing something completely different when I landed in this mess. You may retire or change your job, I am here for the long haul and that is a huge responsibility that occasionally feels overwhelming.

The final thing that I wanted to mention was that despite what has happened to us as a family and to Bee in particular we are a happy bunch. The ride has been terrifying and I wouldn’t wish it on anyone but we are doing really well. The more I read, connect with other parents and work out my own coping strategies the less daunting life feels – despite this I understand that I cannot defend myself or her from the unexpected.

I love my daughter fiercely, but I miss her and that is OK. I love her beyond words, but I compare her to her peers and feel sadness and that is OK. I love her with every atom of my being, but my heart aches when I think of the future I had imagined before all this and that is OK too. For such a long time I have felt like a failure because I knew that, no matter how bright the smile, I hadn’t made peace with what has happened. Thanks to spotting Rose’s article on Twitter shared freely by Care To Share Magazine I feel more positive than I have in a very long time – turns out I’m normal!

With thanks,

Sarah Clayton

You can follow Sarah via Twitter: @PosturalCare

Commentary by Rose Harwood

Rose Harwood

Rose Harwood

Sarah contacted me via Twitter after reading my article in the first edition of Care To Share Magazine. We exchanged contact details, have been in phone and email contact since, and are planning to work together in the future to promote awareness of Chronic Sorrow. Thanks to Stuart Sorensen and the many who shared the article via Twitter and Facebook.

We planned to write a joint article about what might help to support a person with Chronic Sorrow, but when I received Sarah’s contribution I felt it must stand alone. I have read it several times, and it still makes me angry and makes me cry. When Sarah needed support she was made to feel that she should be grateful that her daughter survived, and she was not supported to understand and manage the powerful recurring grief she experiences. My heart goes out to her and the many individuals and their families who have been judged, misunderstood, and left to ‘muddle through’.

What can you do to help?

So…what can I add to Sarah’s five points above?

o Sarah is spot-on about kindness being a great place to start. Asking the person how they are, simply acknowledging the extent of their losses, and taking time to listen to the person’s story will all help immeasurably.
o See Chronic Sorrow as a normal grief response to multiple, ongoing losses (Roos 2002). Chronic Sorrow was explained in more depth in my original article, so I won’t expand upon this again here.
o Inform parents and carers about the existence of Chronic Sorrow, without making any judgement about or implying whether or not you believe they are experiencing it themselves. Support them to identify triggers (both expected and unexpected, as discussed in last year’s article), and be sensitive to these.

Scrutinise service environments for potential triggers. An example of this in my own work was Chronic Sorrow training at a children’s hospice which also provided short breaks to children with profound and multiple disabilities. Close to the entrance there was a large board on the wall depicting the night sky, and every star when opened memorialised a child who had died. This might have brought comfort to parents who had lost a child, but was not helpful to parents who were accessing the service for respite and had not even considered the possibility that their child might die before adulthood. When I pointed this out to the staff, it transpired that there had indeed been one or two respite parents who had made negative comments about the board, but the idea originated from a parent whose child had died, and it was well-received by the majority. After the Chronic Sorrow training staff talked to the parent and moved the board to a different area not commonly used by short break families.
o Realise that it is not realistic or helpful to expect a person to ‘accept’, or to focus on achieving acceptance as a priority. Instead, think in terms of ‘adaptation’. What is important is that they are able to adjust their functioning to ensure the cared-for child or adult’s needs are being met on a daily basis. Understand that denial can have a positive function. It can give people the strength to carry on.
o Get yourself updated on theories of loss and grief. Thinking that grieving is a time-bound, linear process is old hat! There’s nothing orderly about grief, it’s a messy process that varies from person to person.
o The following have been found to reduce the impact of Chronic Sorrow:
• A close bond and an affectionate relationship between the parent / carer and cared-for child / adult (Wiliamson and Schulz 1990)
• A close bond and shared perceptions, values and roles between parents / carers (Williamson and Schulz 1990)
• Demands made on siblings being viewed by them as reasonable and realistic (McHugh 1999)
• Realising that the ability to cope effectively with adverse life events can lead to enhanced coping skills and an ability to prevent or reduce future stressors (McMillen 1999)
Anything that you, your team or family can do to acknowledge, support and maintain these strengths may be helpful.
o The following have been of value to some people with Chronic Sorrow: brief psychodynamic therapy; behavioural exposure-based treatments; family therapy; interpersonal therapy. The common element in these is an emphasis on facing the reality of the loss and processing the loss (Exline, Dorrity & Wortman 1996). Remember that one size does not fit all, and an eclectic approach is advisable!
o Support the person to review how their life has changed since the event or diagnosis, identify secondary losses that are significant, and determine if any aspects of these losses can be regained. They could also consider their support systems and whether these could adapt, and reflect upon and adjust their expectations of others. One mother realised she really missed her monthly ‘Girls Night Out’, and was able to reorganise her support so that she could rejoin this regular event. Any ambivalence and resistance toward support might be explored, as could role problems, dilemmas and ambiguities. Another carer had been relying on her sister for emotional support, but her sister was a practical person who ‘got on with things’, and was uncomfortable with in-depth discussion about emotions. The carer realised this, and used a close friend more for emotional support, adjusting her expectations of her sister by asking her for help with practical tasks, which she was more than happy to do.
o Sarah talked about her need for control. Parents, carers, and people with long term conditions who were hitherto answerable to no-one can often find their privacy invaded by professionals and their decisions open to scrutiny. Explore all options to ensure parents and carers have as much control as is appropriate and possible. Models such as ‘Team around the Child’ can support this if used effectively. Make sure there’s timely access to information. Don’t impose your own agenda, and believe that families already have resources that can be put to good use and recognise families as valued team members with unique expertise and knowledge. Be clear about roles, responsibilities and focus. Accept and approve coping attempts and build confidence and competence together, and challenge destructive strategies with empathy and sensitivity. Recognise and respect pain, deliver bad news with honesty and care, and accept and deal positively with anger.
o Finally, if you’re really serious about supporting empowerment, you might find some resonance in Wolfelt’s ‘Companion Model’ helpful. It’s recommended by Susan Roos, and I’ve grown to love it:

• Honour spirit (not intellect)
• Curiosity (not expertise)
• Learn from others (not teach them)
• Walk alongside (not lead)
• Be still (not frantic movement forward)
• Value silence (not filling painful moments with words)
• Listen with the heart (not analysing with the head)
• Bear witness to struggle (not directing the struggle)
• Respect disorder and confusion (not impose order and logic)
• Going into the soul’s wilderness WITH (not being responsible for finding the way out)
(Wolfelt 1998)

References

Exline, J., Dorrity, K. and Wortman, C. (1996) Coping with bereavement: A research review for clinicians. In Session: Psychotherapy in Practice, 2 (4), 3 – 19.
McHugh, M. (1999) Special Siblings: Growing up with someone with a disability. New York: Hyperion
McMillen, J. (1999) Better for it: How people benefit from adversity. Social Work 44 (5), 455-467.
Roos, S. (2002) Chronic Sorrow: A Living Loss. Brunner – Routledge: New York and London

Williamson, G. and Schulz, R. (1990) Relationship orientation, quality of prior relationship, and distress among caregivers of Alzheimer’s patients. Psychology and Aging 5, 502 – 509.
Wolfelt, A. (1998) Companioning vs. treating: Beyond the medical model of bereavement. Part 1 – 3. Forum Newsletter of Association of Death Education and Counselling 24, 4 – 6

About Rose Harwood

Rose managed services for children and adults with disabilities, and trained staff for 25 years before setting up Learning Disability Training in 2006 to facilitate courses on a variety of topics, including Chronic Sorrow. She is also an Associate at Paradigm and at Health & Care Inquiry Associates (HCIA).
Twitter: @RoseHarwood1 http://www.learningdisabilitytraining@fsmail.net
© Rose Harwood 2013

This article is copyright protected. It is made available to Care To Share Magazine without charge for personal use only. It may not be stored, displayed, published, reproduced, or used for any other purpose without prior and written permission from Rose Harwood

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