Hospital life : The carers’ loss of self

There is one frustration I face daily as a carer. It is the feeling of a sense of loss. It is a loss like no other. Interestingly, this feeling is quite common amongst many carers.  Many carers do not even realise that some of the anger  they direct towards their caring role is as a result of their feeling of loss. Many times, caring is done fully by the caregiver-usually a parent or guardian. In an instant, the needs of the child take precedence over the carers’s needs as a person. Carers give up hobbies, careers, social ties and most of what gives them substance. This in my opinion leads to what I like to think of as self loss. The self loss creeps in slowly and inevitably. As more demands are placed on the carer, their own needs begin to pale in significance. With good reason, the child’s needs take centre stage. As parents or guardians in the first instance who better to assume the role of complete and absolute responsibility for meeting their needs?

When your child or loved one is sick for a short time, this is not a problem. In no time, the child becomes well and things  return back to normal. For some other carers unfortunately, things never return to normal. The chaos becomes the new normal, they become forced to accept the new normal and adjust their lifestyles and everything to suit looking after their child. Initially, it does not seem like too much of an ask from the carer’s emotions and psychological well-being. However, as time goes on, the cracks begin to become apparent. The cracks form emotionally and psychologically and gradually assume their existence in the carer by becoming deeply rooted as a feeling of loss. The existence of these feelings of loss though deeply impressed on carers are sadly not only normal but very common amongst carers. The only difference being their time and degree of occurrence. are very normal.

My question today is this – is it possible to avoid these feelings? Perhaps care in a better way to make the carer rocksolid against these feelings? I fear the answer is no. These feelings come to everyone in this position but what we can do as carers is control the  extent to which these feelings affect us. How?  By managing the extent to which we let these feelings ruffle the feathers of our existence.

It is okay to feel frustrated about not being able to do the things you really feel deprived of as a result of your caring role. Trust me, even the rock solid people you see around whose circumstances differ from yours will feel exactly like you if they walked in your shoes for as long as you have. What I am saying is please don’t be too hard yourself.

On the flipside, fellow carers like you who seem emotionally strong do not feel that way everyday. They experience high days and low days. What we all aim for is to have more high than low days. To have more high days, we consciously look at the things that help trigger and sustain the high days and minimise our exposure to the ones that trigger the low days so that they will not inger on for as long as they currently do.

When we consider things that trigger and sustain the “high days” we look at everything even the most insignificant things. I will give you an example – Azi is a parent carer who finds himself very frustrated on  some days, he discovered that he feels extremely happy at the sight of the bowl of red grapes on the table. It is not an explicable reason for happiness but it just so happens that the sight of the bowl of red grapes in a bowl on the table by the kitchen window always leaves him experiencing a feeling of elation. The sight more than the taste of those grapes makes him happy. In his minds eye, it triggers happy thoughts that take him back to his days on the family farm when he felt happiest basking in the warmth and comfort of his family. In fact, the more he asks himself why the grapes make him feel so happy, the more he realised its significance to him.

Another example is John a parent carer who in his frustration and boredom found himself colouring the pages of an empty notebook. It all started out of boredom but with each stroke of his brush, he found that he began to feel elated and lost in the distraction provided by the burst of colours he created as he marked the pages. Today on very stressful days, John creates time for colouring pages. He has colouring books, painting projects and so on that help him through difficult days.

As carers, people lose the ability to do the things they really wish for. However, adopting a new approach can help them to do different things for themselves. They may or may not be remunerated for it but the distraction availed them by such activities make the activity “their” own thing to do amidst the uncertainties posed by the caring role they face daily. So we technically begin to find ways to create a yearning for what surrounds us or begin to learn to wish for new things to sustain and distract us not only from our current circumstance as carers but also from our inability to live the original dream.

It so happens that we tend as humans to keep chasing either what we do not or cannot have. In order to cope with an otherwise stressful caring role (where one’s well-being is absolutely more fragile than they realise), we need to find a way to distract ourselves away from our inherent human tendency to chase what we do not have. This idea can allow us to find and trap happiness even momentarily. In due course one can create lots of “moments of happiness” which we can loop together to form “chains of happiness” that will help create more high days.

  • Finding things to do within the current circumstance can be helpful: Performing  activities that complement our caring role can make the caring role feel less stressful. For example, it may not be possible to work a 9 to 5 job as a result of your caring role. However, if being occupied means a lot to your well-being, you can decide to choose part-time or work from home options in terms of employment. This way, you still have time to care for your loved one while still creating time for yourself.
  • Volunteer if you can: In some areas, volunteering can be a good way to create time for yourself as a carer, it also provides an avenue to meet and socialise with other people. This also helps wellness especially when done to suit your lifestyle and circumstance.
  • Expect to have low and not so cheerful days:  It is good to be aware of the possibility of having such days. This makes them more bearable. Do not spend the day being unhappy. Identifying your low mood means you will be more able to deliberately perform counter activities to help manage them. For example you may decide to take a walk in the park to lift your spirits.
  • Always look for opportunities to rest: Rest helps to revitalise and energise you mentally, psychologically and even physically. Remember you have to look after yourself if you are to deliver maximally on your caring resolve to your child or loved one.
  • Remember your hobbies: Many of the caring stresses can be dissipated on a colouring paper, sewing project, painting and giving new life to obsolete items around the home. These create positive distractions that can tilt you mind away from your caring role even for a few minutes or hours.

Remember, caring for someone else is not an easy task. You matter too. There is still the possibility of creating bursts of positive feelings through these small tasks. That way you do not stay stuck feeling like nothing is ever being done for you. I sew a pillow once. I am sure it took me over 2 weeks to get it done. Somehow, I began to notice while I was on that silly pillow project (SPP) as I called it, that it kept giving me something to look forward to. I made time before sleeping or in the early hours to sew in a few stitches with my needle and thread. In the end, I felt a sense of accomplishment when the SPP was completed. It was an almost alien feeling but it was an elation I would never forget. I was keen to replicate that feeling and ever since, I have recovered my sense of usefulness as a human being. I enjoyed the look of pride, admiration and sometimes shock on many faces when they say my SPP.

Sadly, when you are a carer, you sometimes feel very expired. You forget your other usefulnesses. You even forget that you are good at things other than caring. All you need is a bit of time management, a bit of consistency and a sprinkle of determination and you the sky will still be your springboard like everyone else.So find those things that make you happy and do them!

Thank you for reading.

If you enjoyed reading this, you may also enjoy some other topics we have discussed in this series.

Photo credit: Pixabay