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 being looked after by others. Their feelings of vulnerability are heightened around unfamiliar people. When caring for your sick child letting others in who want to help avails the child the opportunity of this adjustment. The child starts to learn get used to being assisted by other people. It makes it less traumatic for the child and even yourself when you have to take time off for however long is practically possible.
- It helps reduce stress: As your child adjusts to external support, they begin to unconsciously experience a detachment from you that is wide enough to allow you some wriggle room to rest, perform other activities or even take a break.Although most carers know that they need to rest, it is one of the most difficult thing for carers to achieve. Not seeking help, taking things easy can make a carer feel in control. This control only lasts in the short term. Should the childs illness be prolonged, the weight becomes too heavy to bear. The pressure of this may not even be apparent to the carer who otherwise copes very well. Short temper, frustrations, tearfulness, exhaustion and so on are just a few of the tell -tale signs of stress build up. Our pride can get in the way of accessing help. The feeling that asking for help makes one appear weak can hinder our reaching out for help. It is okay not to be in control always. What’s not okay is to stay locked away, keeping it all inside. It only gets worse that way. Asking for help and reaching out is a brave thing to do.
- It gives you the opportunity to relax: Relaxing as often as possible is one thing that carers should aim for. Even when you cannot find the time to, simply sitting still, breathing and doing nothing can be just what you need to keep you calm and calculated. A nice soak in the bath can be very relaxing and help you sleep better.A nice walk in the park and help you relax and maintain your well-being fresh air is an invaluable, cheap and available resource that carers can take advantage of. It is when you look after yourself that you can learn how to cope with the stress that you face as a carer. Carers need to dissipate these less desirable energies positively. By accessing help and support, carers can rest and distract themselves through various activities. They can also find time to socialise with other carers allowing these stress to be channelled out safely.
- It allows you take a break from care: Carers deserve a break too. It is not selfish to want to make everything stop. It is only natural. However it may not be possible for things to completely stop stress wise. As long as you are the main carer for your child, there will always be some degree of stress. Reaching out or accepting help can help vary the degree of this stress by providing you with some well deserved respite. To achieve this manageable level of stress, it may be possible is for you as a carer to take a break. A break can range from a few minutes to a few weeks. Take whatever is practically possible to get in terms of cover for your child while you rest. Don’t spend your break feeling guilty about being away from your child. I used to do that a lot and in the end it always wasted valuable rest time. It is true that we, the main carers, are the best ones to look after our children but if we don’t look after ourselves, then we will breakdown completely. I am sure that if our children could understand they would not object to it.
- It allows you have time to be more organised: Carers manage the care for their sick children, their other children and the rest of the family. They are always busy thinking, plotting, organising and joggling all the care that we manage in and out of the home. There are hospital appointments, pharmacy prescriptions, school run for the other children, personal doctors’ appointments, house catering duties and so on for carers to deal with. Many carers also add work commitments to this list. It is no wonder that they are always stressed. A bit of organisation can help organise tasks and make them easier to remember and perform. To find the time to organise things around the home, some respite from a family, friend or support worker may mean this would be achieved. You can open folders for appointment letter, record dates in a diary, keep things neatly out of sight and so on. In the end, this will reduce the stress of retrieving items, avoiding missed appointments, having adequate prescription supplies, managing the home and so on. Let your personal preferences guide your choice of organisation.
Without help and support, it would be practically impossible to cope with a sick child – at least long term. Don’t wait to reach breaking point before you begin to access all the health and support around you. This way you can still live your life with the ability to manage stress. At one time I lived 12 months in the hospital with my son and there is no way I would have pulled that off without allowing everyone chip in- staff, family and friends. We also enjoyed 4 happy years within our community with the help and support of several structures. So don’t leave it too long. Get help as soon as you can. Some of the support structures take time to set up so the earlier the better!
Thank you for reading.
If you enjoyed reading this, you may also enjoy some other topics we have discussed in this series.
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