Monthly Archives: October 2017

Do you know what I did for a few weeks during my son’s hospitalisation? I went home! Having been hospitalised for 5 months at the time without any hope of  discharge, I had to swallow the bitter pill of detachment. I began the transition a few weeks earlier by letting the nurses assist with some of the tasks that I alone performed for him. He did not take to them at first but he soon relaxed when he realised that I was not budging. It proved that bath time could still be fun even when anchored by someone else. I knew deep down that I needed a break. I had to spend some time with the rest of my family too. While at home, I kept wondering how my child was in the hospital. I must have called a million times on my first day away from him and each time, I got told that he was fine. At times when it was impossible to get through to the hospital,  I felt emotionally and psychologically helpless. While at home, I was floating about, not able to actually enjoy my supposed break or even relax.This was my story for the past few days. What kept me going was family. The warmth of being around them. I went on to spend time with them and even allowed myself enjoy that time out. I was happy. We had laughter and of course the odd disagreements. It was fun fun fun! At the end of my break, the time came for me to return back to my duty post beside my sick child in the hospital and did I crumble inside? Of course I did. Don’t get the wrong idea, I love being with my child here in the hospital during his long admissions. On this occasion however,  I think I got too cosy at home and remembered the comfort of lying in my bed and just being at home. It hurt! You see, when you have a sick child and find yourself hospitalised for a long time, initially you struggle to adapt to being restricted to the hospital. However soon enough you adjust and become completely used to the routine. You become hospitaley. It works well for you when you are the parent in the hospital. You adapt to the monotony and sluggishness of time. You start making new connections with staff (to guarantee the consistency of care your child receives) and other parents (to maintain your sanity and give you a break from your thoughts, endless games of candy crush or just boredom!). Going back and forth from home to hospital can sometimes be inevitable especially when you have other children to look after. However it doesn’t make it easier for you as the carer – just wrecks havoc to your otherwise perfect adaptation strategy.  Silly right? It is quite normal to nurse many hospital frustrations and crave home. You may even find that you keep these feelings secret because they sometimes leave you upset with yourself for being selfish. The good news is that you are not alone in experiencing these feelings. Now listen to this there’s more! When you get discharged home with your child, you may find that you walk right into another set of emotions. Every time your child as much as coughs especially in the first few days post discharge, you may see that you begin to feel very terrified by the thought that your child will end up back in hospital. This feeling may petrify you (if you are already cosying up to being at home), or annoy you (if you begin to wonder why your child cannot just be stable? Surely that’s not too much to ask!). As you begin to adapt to home life, the stress starts again to build up with endless things to do and no time to rest! The key to surviving all these emotions that we beset us as parent carers is to stay calm and accept that the ill health of our children are way beyond our control. There is no need letting it make us too sad because it will not really change anything. Some parents have expressed feelings of resentment towards the sickness plaguing their children and this too is quite normal as long as we do not dwell on those thoughts for too long. So you think it, you discard it so that you can move on to the next thing which is survival. All these feelings do not make us as carers wicked or bad. They make us human, tired and most times, exhausted. What we all need from time to time is rest . We get offered help as carers from family, friends, community health teams, social workers and so on. What we have to learn to do is to take as much help as is being offered to us by way of support. Sometimes, we turn down help because help can be feel intrusive even though this is hardly the intention when it is offered. Accepting help can make us worry about our homes being turned into hospitals with healthcare practitioners streaming in and out. I worry about that too. However ,in my experience, it is best not to turn down well meaning help so that when things get too stressful for us, we can always be guaranteed of some respite. This is because, such help although annoying may be the only opportunity for us to relax sometimes as carers. I will tell you some of the reasons why you cannot really go wrong accepting help and support It helps your child learn to allow others help: Reaching out for help and accepting help when it is offered are the elements that can help you survive your journey as a parent carer. The saying that no man is an island becomes even more apparent when you care for a sick child. When you nurse your child, you know how delicate they can be emotionally. Many carers know how difficult it is for sick children to adjust to […]

Hospital life : Why you need help and support.

It had been a crazy couple of weeks for me. I had thought that through it all, I would have found time for myself ! Well sadly, I did  not. I had very tight schedules with many crazy deadlines to meet. I also had early mornings, late nights and everything in between. What I needed was some me-time but that was impossible to get. I used to be able to steal this me-time within the chaotic days but not these past few weeks. I could neither consistently put down as much as a scribble on paper nor could I even go for a walk. It was absolutely chaotic and left me feeling very messed me up! I always feel that we have it in us as humans find deeper sense in our lives by engaging our hands and feet. I know that it sounds silly but somehow by engaging these two parts of our anatomy to varying degrees and at different times, we secure some time within the nearly impossible schedules we have as parent carers to be by ourselves and therein lies the hope of some sanity for us. The more we are able to steal this me time, the more possible it will be for us to create more order and gain more control over the rest of our day and hopefully our lives. With our hands, we write, colour, sew, do the washing and so on. With our feet, we simply walk (notice that I did not say run because that may be stretching it too far for already exhausted carers like us!). Those of us  who can perform these two activities nee to pause now because there lies one thing to feel very thankful and fortunate for. Do you know why I begged you to pause? Well, It’s because if you are a parent carer like me, you will know that within our chaotic lives, it can be nearly impossible to ever find something to feel fortunate about. It is during these seemingly mundane activities that I find for example that it is possible for me to steal some of this me-time.  That alone time can be 5 mins or less. It just allows you organise your thoughts, make plans  or simply stay quiet. This me time does not necessarily mean that you have to be physically alone to enjoy it, you can still grab it even during activities by shutting everything out and relaxing your self even for as few as a few minutes at a time. Such peace and serenity can be all you need in several bursts throughout your day to restore some calmness and orderliness to different parts of your upsey, downsey or what I like to see as the yo-yo emotions that sits within most of us carers. So for example, a typical day in a carer’s life may start with needing to do administer medicines and give the child a wash. As a carer, you can practice some relaxation by taking deep breathes as you perform these simple activities. Time is one thing that is precious and never in abundance especially where carers’ needs are concerned. It is the most sought after companion that is never accommodating to us. So one helpful way to create time for us amidst our busy lives is learning to make that time within the activities we perform. Learning to take deep breathes even as we perform all our activities can drastically improve our well being. Here are some tips that I practice and find useful: Multi-tasking is good but the downside is that it can leave you stressed. Break down all the tasks for the day into segments before working through them. Reduce your self exertion by performing and completing the task(s) only a few at a time. Remember to breathe and focus your thoughts on each task(s) you perform. This makes you perform them better with more focus and stops your mind from being overwhelmed by everything outside the task at hand. You can sit still in time clusters. So throughout the day, you can sit for 3 mins in every 1-2 hrs just catching your breathe. When you start to get worried and stressed, writing your thoughts in a book can help declutter your mind. In the end, what you may find is a more relaxed you amidst your day. There are many other ways that parents find to cope through the stress of caring for their children. As long as the method is safe and the end result is some level of calmness and stress relief to that parent, then fire away! Every parent will find their own way in the end. No one has any formula but hopefully hearing about different strategies adopted by different parents will help you formulate your perfect method. 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    

Hospital Life – The Parent caring “Yo-Yo” effect

Have you ever wondered what it must be like for a parent to be told that their child has an illness from which they cannot recover? That the child may live but have a very low quality of life? That the prognosis is so dire that their life span cannot even be guaranteed? I never had to ever have these thoughts before I had my sick child. It was a random portion of misfortune that had been apportioned to me by nature. Suddenly the lottery of birth had dealt me this very devastating blow. There are many like me who now have to live with the problems associated with this type of news about their children. There are so many aspects to becoming a parent of a sick child that I daresay, not even a single book on the subject will cover.  In fact looking back now, the things I thought were problems were actually not problems and its funny also how my definition of worry has changed with time. On a daily basis many parents in my new world have to deal with these sorts of information. I pray that you never have to because when hit with these possibilities and probabilities, your life changes forever. Some of us have been living on the edge not really knowing from one day to the next what the future holds for our children. What their quality of life will be and how they would cope with their disabilities long term. Some of us even add the worries about our own life expectancies to it. Oh! What if I die? What will become of my child? Who will look after him/her? STOP!!! I will stop you there please. The brain is not made to cope with information overload. So how then can it deal with question over load? That line of questioning only leads to despair.  There are too many unknowns to deal with. Even in mathematics, equations are used to get values or answers for unknown variables. As the unknowns increase, we need more equations to help substitute and solve them. Also, as unknowns increase we just generally stop and give up on any hope of a solution. Life is filled with unknowns. Sometimes we just need to breathe because there is also something beautiful that life is also filled with…Hope! I will give you an example. Who knew some 20-30 years ago that there will be such medical advancements and prowess as there are today? In the past a diagnosis of diabetes or HIV would have been a life sentence. However, fast forward 20-30years later, today, that is no longer the case. There are better outcomes, management plans and treatment options for those patients. In the past, amputees did not get the care and support that are now readily available to many of them. So many have now gone on to become olympians and actively enjoy their lives to the fullest. So there is still hope. Some rare conditions are being researched into daily leaving tomorrow pregnant with hope for better outcomes. The effects of particular illnesses can also vary from patient to patient. This means that there are very different outcomes for different patients even with the same illness. Even amongst the healthy still lie life’s uncertainties. Who said that healthy people do not die in different ways? We will all get to answer the clarion call somehow.  That is also part of the unpredictability of life which we have no control over. What we can control however, is how we choose to live our lives. We can choose to be happy by spending as much quality time as we can with our children- healthy or sick. We can make every living moment count. Worrying too much about death and the impending end of our sick children can rob us of all ability to enjoy life with them. These different situations we find ourselves in, make us stronger people, better people. Only if we allow ourselves power through our challenges. There is so much strength deposited in everyone. They only become available to us on a need-to-use basis. Many parent carers are gurus at multitasking and joggling. Most of them are very resilient. The sad thing is that because they are so busy getting on with their challenges that they never notice how strong they are. The act of caring for your sick child means that you learn to be a more patient person. Can you count how many hours you have sat staring into space waiting for a blood test, or a result, or an operation or just waiting for your child to get better. Did you ever imagine that you had it in you to sit still? Sometimes you find yourself praying for days and weeks for your child to feel better. You find that you possess some form of faith or strong will (which you never realised that you possessed) to help you stay focussed through a stormy bout of deterioration. Did you ever know that you could be as prudent as you have become with your finances? You suddenly find  that you are able to find ways to make your finances stretch through your demanding circumstance. So although problems differ, they all have stress, frustration and uncertainty in common. We can however, control how we allow those problems affect us by adopting a different approach to them. So look inside of you and draw from the strength that lies within. Do not focus on the problem at hand but on the hope that it will get better. Keep taking baby steps in the night directions. Stop over thinking about the future, it is so unpredictable that it seems a waste to allow it weigh us down. Take it one day at a time. One hour at a time and one moment at a time. Deal with each step that lies before you. After then ask yourself what the next step is. Deal with that and then […]

Hospital life – One step at a time.