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Are your parents ‘both here and gone’?

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Written by Emma Outten

If your elderly parent has a life limiting illness or dementia, or are living with a stroke or brain injury, then you could be experiencing what is known as an ‘ambiguous loss’. In Carers Week, Emma Outten garners coping strategies from counsellor, Chloë Swinton.

Ambiguous loss is described as the most stressful and confusing type of loss, as it is usually ongoing and without closure or resolution and often involves living with someone who is both here and gone.

So says Chloë Swinton, who is passionate about the subject. Not only does the qualified and BACP registered counsellor work with carers who are affected by the ambiguous loss of a loved one, who may be living with illness, dementia, stroke or brain injury, she knows first-hand how difficult this loss can be, and it all began when her dad first became ill. ‘What followed was 18 years of uncertainty in our family,’ says Chloë.

Loss, relief and guilt

Her dad was diagnosed with Parkinson’s and then dementia. ‘Things got very difficult – I was working all week and then often travelling a three hour journey home at weekends, supporting my mum, as carer, and helping to look after my Dad.’ Eight months after Chloë’s parents moved out of the family home into a bungalow, her dad was in need of full time care, and eight months after that, he died. Her parents had been married for more than 40 years, and it has been particularly difficult for her mum, as Chloë says: ‘The relief of that person being at peace can create a lot of guilt.’

Ambiguous loss can affect families in all sorts of ways, from a child leaving home all the way through to an elderly parent going into a care home, and the phrase was originally coined by an American educator and researcher called Dr Pauline Boss.

Whatever the trigger, ‘It can be a real emotional rollercoaster,’ says Chloë. ‘Some days are good, some days are not so good: some moments are good, some moments are not so good.’ She adds: ‘There’s a lot of sadness, anger and guilt – all sorts of emotions come up.’  Chloë talks about learning to live with uncertainty. ‘It’s not about finding closure with ambiguous loss, or finding solutions – it’s about living well.’

Living well with ambiguous loss

With her clients, she tends to cover five topics: Connection; Mastery; Resilience; Hope and Acceptance:

  • Connection – as a carer, you may no longer feel like a daughter, mother, sister, or wife, but it is still vitally important to try to connect with yourself (not to mention with others). And when things get too much? Chloë suggests the 4/ 7/11 breathing technique, whereby you breathe in for a count of seven, and out for a count of 11 and repeat four times.
  • Mastery – is all about mastering the balance between holding on and letting go. As well as counselling, Chloe offers therapeutic drumming, as a way of letting go, something she discovered when she was going through a stressful period at work, as it helped relax her mind and body.  She works with vibration and also energy (offering reiki) as a holistic therapist.
  • Resilience – is about learning to find the silver lining. Chloë suggests keeping a gratitude diary, even if it’s just writing down three positive things that have happened, each day.
  • Hope – is about finding meaning in your life. As a carer, all you might be able to think about is how to keep your head above water, but Chloë says it’s still important to try and find meaning, somewhere and somehow, and to make new dreams.
  • Acceptance – is all about taking time. And although it’s hard to read up on health conditions such as Parkinson’s and dementia, Chloë says that knowing what to expect when it comes to a loved one can help with acceptance (but it’s just about finding the right time)

Out of all of them, connection is the key theme. ‘If you are not OK then everyone else is not OK,’ says Chloë. ‘Counselling can really help. It gives you the opportunity to express those deep, dark emotions that you’ve been holding in, and don’t feel able to talk to your family about.’

And, as well as offering support, Chloe adds: ‘I want to raise awareness of ambiguous loss, not only through my own experience, but through my work.’ She adds: ‘It’s described as one of the most stressful kinds of loss but it’s not widely recognised.’

  • During Carers Week, Chloe has been offering a number of free opportunities of support to unpaid carers in Norwich and Norfolk. On Friday June 16, from 10.30-11.30am, she will be talking on ‘Understanding Ambiguous Loss’, at The White House, Fougers Opening (off Ber Street), Norwich, NR1 3AH
  • Email chloe.swinton@yahoo.co.uk; call 07772 843327; visit www.ambiguousloss.co.uk/carers-week-2017

Seven suggestions to help you manage, as a carer:

  1. Recognise ambiguous loss: name it, and realise that you are not to blame – it is beyond your control
  2. Call on others for support: it could be family, friends, community or support groups (such as Norfolk Carers Advice Line, on 0808 808 9876)
  3. Be aware of anger and guilt: talk to someone you trust or a qualified counsellor about your difficult or conflicting emotions, your hopes and fears and how you are managing day to day.
  4. Revisit your family roles: what role do you take and what would help you manage this adjustment?
  5. Balance your thinking: it is less stressful to encompass paradoxical thoughts, for example, ‘my loved one is both gone and still here’.
  6. Renew hope: Even though this may seem impossible at the moment, finding hope and new options will help you cope and balance the ambiguity
  7. Look after yourself: find activities that help you manage when you feel powerless, such as meditation, playing music, mindfulness or exercising
  • Are you experiencing ambiguous loss? Join our forum and let us know

About the author

Emma Outten