Expert Advice

Column: Ian Welsh’s experience of being a carer

experience of being a carer

 

Ian Welsh, BEd (Hons), Dip N (London), RN
Ian Welsh, BEd (Hons), Dip N (London), RN

Our regular expert columnist, Ian Welsh, talks us through his own experience of finding himself in the role of carer for his late wife, Helen.

 

Caring for a relative with a long-term condition is a challenge that few of us anticipate in our younger years.  We take for granted our health and that of our loved ones until something happens to change it.

I am writing this article from a dual perspective.  I am a registered nurse, having worked with patients and their carers, and I was also a carer for my wife, who had end-stage renal failure.  Professionally, I know the ideals of carer support.  Personally, however, I felt let down by the professionals who, paradoxically, gave such good care to my wife.

I hope that in writing this feature I can help you as carers, or as someone who may find yourself in a similar position, to recognise your own needs, realise that it is not unusual to have them, and perhaps point you in a direction where you might find support.

 

Recognise your own needs

 

The first stage is realising that you need support.  Most of us are caring people; we don’t have to do it very often, but when a loved one falls ill we slip into carer mode.  That’s the natural thing to do.  We just step up and take over the roles that our partners would have done, such as preparing meals or the daily child care.

But when a more serious condition develops, taking on a caring role may reduce the time, energy and finance available to devote to the other demands of life.  This can affect work, social life and other relationships.  The impact of caregiving shows that one-third to one-half of carers suffer significant psychological distress. [1]  This impact may not be immediately apparent because it develops over a period of time, but nevertheless it is important to recognise it.

In my case, I didn’t recognise it and it took a friend to point it out.  I met someone I hadn’t seen for a few years who had been told of my wife’s illness by a mutual friend.  After asking about her he said `who’s looking after you?’  This took me by surprise because it hadn’t occurred to me that I needed help.

On reflection, I realised that there was a lot going on that I hadn’t recognised.  I was in a full-time, demanding job, and I was constantly worried about my wife’s health, especially when there were intermittent crises.  We also had children who were at a crucial stage in their secondary education so I wasn’t getting very much ‘me time’.  Writing this down now makes me wonder how I didn’t notice at the time, but it has been said that when you’re in a swamp you don’t see things as clearly as from the firm high ground. [2]

 

Don’t feel guilty

 

Many carers will, I am sure, share my sense of satisfaction that we have done the best we can for our loved ones.  However, acknowledging our own needs can bring on a sense of guilt.  `Why should I be looking for help when I’m the healthy one?’  By showing you some of the research into this field I am trying to reassure you that you are not being selfish; you are also affected by the illness, just in a different way.

One study showed that the main areas of need identified by all participants were: social and psychological support; financial concerns; and the need for choice and information. [3]  If you are not already receiving emotional support, perhaps you could ask for it.  There are carer groups relating to particular conditions who offer support – ask your GP for details.

 

Find out what support is available

 

Financial support may be available and a hospital social worker may be the best person to advise.  My wife was over a year into her treatment before a chance conversation with a social worker picked up that she was not getting the support she was entitled to.  Regarding information: as a nurse I knew what questions to ask and I understood the medical language, but I’m conscious that many people will not have this advantage.

Please don’t be afraid to ask.  The current trend in health care is that patients can no longer just `have things done to them’.  They should give informed consent, and that involves receiving information delivered in a way that they understand so that they can make reasonable decisions about their care.

 

Want to share your own experience, or ask Ian for advice?  Comment below or get in touch via our Facebook, Twitter or Instagram.

 

Further reading:

[1] Oyebode J, Assessment of carers’ psychological needs, Advances in Psychiatric Treatment Jan 2003, 9 (1) 45-53

 

[2] Schön, D. A. (1987). Jossey-Bass higher education series. Educating the reflective practitioner: Toward a new design for teaching and learning in the professions. San Francisco: Jossey-Bass.

 

[3] McIlfatrick, S. (2007), Assessing palliative care needs: views of patients, informal carers and healthcare professionals. Journal of Advanced Nursing, 57: 77–86

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