Blog 15: A Carers World

Hi. My name is Jim Sheehy.  This is reallyhuman.ie and this podcast is about the World of Carers.

A couple of months ago, I had a bad Monday morning.  Despite taking precautions, I had a bladder accident coming out of swimming which meant ‘home and change’!  My mood was livid and black.  Maire, my wife and carer, was in the car as I ranted my way around the ‘What’s the point … why bother trying’ foggy swamp zone.   The VICTIM!  What stopped me in my tracks was her statement: ‘The quality of your life impacts the quality of my life’.  This was a cry from the heart which helped me scramble out from from ‘what’s wrong with me’ to ‘what’s happening here right now’.  Maire was saying in a beautiful way: ‘Listen, mutton-head, we’re both survivors in this world of managing MS … make room for me!’

This presentation is about the carers that are just as much impacted by the chronic condition as the one with the title.  Caring for a vulnerable person means you need to become an expert in self-care.  There are some carers better equipped to keep their own identity flourishing while meeting the needs of their loved one.  Other carers are less able and struggle.   

A key question for carers: Is your role more important than who you yourself really are?  Have you lost who you once were by being overwhelmed with the role? 

Lose themselves in the role.  Caring in unskilled ways ages us dramatically.

 

The carer can become an extension of the one s/he cares for and eventually physically, emotionally and socially.

Imagine the carer having both a ‘Public Mask’ and an ‘Inner Face’.  The ‘Public Mask’ is the image of the carer as ‘available, self-sacrificing, endless energy, patient and caring’. The ‘Inner Face’ can house fear, anger, resentment and guilt.  How does the carer get these two very different realities to understand and talk to each other.   Both parts are valid: ‘Yes, I want to care for this person’ and ‘Yes, there are times when being a carer is bloody awful’.

Fulfilling the twin needs of ‘me having a decent lifestyle’ and ‘doing my bit in caring for this person so many hours a week’ is very tricky.  I often say that the mental attitude inside a person before a chronic condition impacts will influence hugely their response or reaction to this new development.  Similarly for the carer - how vibrant was their sense of what energised them and how well could they protect themselves if another person acted unfairly in demanding too much.  They bring this capacity, well-developed or not, when caring for their loved one who is now vulnerable and at times dependent. 

 A person I admired once said to me: ’The greatest enemy of good care is sentiment’ .  What she meant was the need to make decisions based on balancing the costs and benefits for both carer and the one cared for.  If the carer doesn’t say YES to what s/he needs to have a decent quality of life and NO to what is enabling and sentimental in caring, then their bodies and behaviours soon say it for them.  The carer gets exhausted and acts in ways that are remote and untypical.

Feeling-worlds the carer needs to know well are fear and anger: Fear leading to anxiety and anger leading to collapse or lashing out.

 

Fear of the unknown has many voices:  progress of the condition, impact of the condition on different members of the family, fear of life becoming narrow and grey.  One woman expressed fear like this:  ‘And then there is the fear - fear particularly of what the future holds in store. This fear has always been there but at times now it can be a little overwhelming. I don't know what the future holds for him. I wonder how long he will be able to keep driving or getting in and out of bed on his own or all the other things he can still do now. I wonder if I'll have the wherewithal to look after his future needs.’

Anger can range all the way through the whole spectrum: annoying, frustrating, angry and raging.

‘Nice’ carers that repress the normal process of becoming angry are more at risk of  auto-immune disease and cancer.  Equally, carers who constantly give in to anger and act it out are prone to increased risk of heart disease and stroke.  After an episode of rage, the risk of a heart attack doubles in the next 2 hours.

So the carer has to become expert at healthy processing of anger and responding to what or who angers me.   First, identify what is the source of my anger – possibly lack of state-provided resources, possibly the why my child came to have his condition.  Or perhaps the source is not so obvious: Me as a person and carer not seen, heard, recognised and appreciated by family, friends and neighbours, perhaps even by the person I’m caring for.  So how to communicate these feelings of fear and anger:  ‘I feel sad when I can’t understand what you’re saying …  I feel invisible and taken for granted in this house … I feel I could rip your head from your shoulders.’

One carer focused on a different and subtle source of anger: ‘Then there was regret and resentment - regret about the things we could have done more of and resenting the fact that they were no longer possible - we could no longer walk on the beach or in the woods or go swimming in the sea together. We could no longer have that good laugh when we  got lost again when out walking when I insisted we were going the right way and we could go in a circle rather than go back the same way.’

The carer, to survive and thrive in a world where fear and anger are never too far away, needs an inner circle of people and activities that soothe and regulate their system. In quiet moments, the carer needs to check: Who is in my inner circle and what activities make me feel alive and uniquely me. 

Carers must find the ‘Movement and Rhythm’ that regulates their system, a container capable of holding the fear and healing the anger: being rocked to sleep in a hug; paddling in the seawater at the beach; listening to THAT song that resonates with what’s in my heart and head right now; the rhythm of the treadmill and cross-trainer; the soothing movement of hand on skin and hair when with a reflexologist or hairdresser; the rhythm and movement of the fragile parts of who you are with intimate friend, yoga instructor or therapist.

In short, making good decisions around care needs a inner and outer support system that is strong and ever-changing.


Presentations on the 4 zones are also available on video and blog through the website – see www.reallyhuman.ie

If you enjoy the material, please get the word out there among those you care for.  You can contact me with comment or suggestion via Facebook at Jim Sheehy Therapy and on Twitter @jimsheehy2017

Take care,

Clarifying Disclaimer:  While the material I am presenting is well-researched and suitable for the general population, I believe each person’s issues and needs are unique.  I encourage you to seek medical and/or therapeutic support if you struggle with an issue or condition that negatively and seriously impacts your life.

 

 

 

 

 

 

 

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Contact me:

Jim Sheehy M.Ed. MIACP
Leitir
Kilcar
Co Donegal 
F94 WV99

087 2137922

jsheehy@hotmail.co.uk

 

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