Hospital life – Worried about discharge

After a long hospital stay, the prospect of going home with your child or loved one can cause anxiety. This feeling is quite normal so try not to be too worried about it. Just so you know, new and even experienced parents face this same prospect in different ways irrespective of the age of their child. For some lucky parents, getting discharged is nothing. However, for some others, the feeling can become more crippling as the d-day approaches robbing these families of the joy that being discharged should bring.  Here are some tips that many of the experienced parents find helpful as the d-day (or discharge day) approaches

(1)Make sure you ask questions: You need to ask questions to clarify areas of your child’s care that you do not understand. This is very important because asking for the relevant information will fuel your confidence. The doctors and medical staff are well trained. They are there to answer your questions. The internet is good for information gathering but remember that the best information for you will probably come from the doctor handling your child’s care. Unlike the internet search results, they have all the specific information relating to your child. This knowledge means that the answers they provide will be tailored to your child’s illness. The information on the internet may be too general or sometimes not updated. Some of the information may not be applicable to your child or loved one’s case and since you are not medically trained you may not discern this fact, causing unnecessary panic. It is best to use the internet to tailor your questions.

(2)Try not to worry too much about the future: Irrespective of whether your child has been recently diagnosed or not. The prospect of confronting the challenges your child’s future may bring can be quite daunting. For this reason like the proverbial tortoise slow and steady wins the race. The best way is to take things slowly. One day at a time. It is my opinion that it makes the prospective journey with your child (after discharge) simpler. In life generally no matter the distance or nature of the journey undertaken, you progress by putting one foot in front of the other. One step at a time, it does not really matter how fast or how slow we go. The truth is that whether you decide to crawl, walk, run or even drive to our destination, you will always finish travelling on the road you are currently on before progressing to the next until you arrive. You will never travel on two roads at once. So you will deal with the information and discharge in your own way. Try not to worry too much. It doesn’t matter if you get there slowly what matters is that you try to trust that you will surely get there.

(3) Make one decision at a time: It is always a good idea to consider making one decision at a time. By looking at only the options immediately before you, you will be letting yourself focus on making those set of decisions before thinking about the next set of options (which have different sets of decisions within them). This approach will keep you feeling calm and in control. It’s okay to wobble and even fall, who doesn’t? The main thing is that help is always available. It may not always come to you, you may have to reach out for it and that’s fine too. At the end of the day, let that be your choice. It’s also very brave to realise that you are struggling. If this is ever the case, be true to yourself and make the decision to reach out.

(4)Accept help especially when it is offered – You can take pressure off yourself by accepting help especially when it literally lands at your doorstep. Further complications with your child’s health can make simply caring for your child so complex that the thought of being discharged becomes more overwhelming than being admitted in the hospital. Suddenly all that you can see is the loss of the expertise and safety that the hospital ward guarantees. One way to cope is to look around you for cues and offers of help from people and networks. The networks can be within the hospital setting, community teams (nurses and health care workers alike), social care teams (mostly attached to councils and Local Authorities), family (nuclear and extended) and even friends. Accept as much help as you can. It is easier to turn down help if you find out later that you do not need it without burning your bridges by constantly rejecting such help. When help is always rejected, it tends to be offered less. However, by accepting help, you give yourself the option of getting more help in future. It is also possible that after turning down help, you may find out later that you actually need it. The bad news is that it may no longer be available. This is why it also a good idea to say yes to help. So if your community team offer you support, take it- at least for now. You will give yourself time to see what difference that help will make to you before turning it down. Don’t shut everyone out (at least not totally). It may later become overwhelming. People – friends and family, won’t offer help if they are too inconvenienced. So snap up every help you can get while it lasts, it will give you the chance to get some well- deserved rest.

(5)Make a to-do list: I find the whole writing process very calming. By writing things down you can also feel more in control. You also relieve yourself of the burden of carrying around your mental plans alongside the discharge worries. In addition to the worries about your child’s or loved one’s health, the tasks required to set things running smoothly for your child’s smooth transition from hospital to home can feel very overwhelming. You probably sit remembering you need to organise your child’s medicines, order supplies like bottles, syringes, pay the bills at home, call the plumber to fix the leaky tap and so on. Putting them down on paper means you will not forget to do any of them. The things that clog up your thoughts may seem quite irrelevant in the scheme of things. However, they really are not. As long as you spare a thought towards them, that’s enough to qualify them as important in my books full stop! So unless you keep them safe in a to-do list, they may just keep bugging your mind. Even the subtlest niggle is enough to overwhelm you when you are stressed out about getting discharged. The good news is that you don’t have to write them down in any fancy book. A piece of paper or paper towel, serviette or anything else you can write on will do as long as you get it all written down. All you have to do is keep it safe. So that when you are discharged, you can refer to it to recall all the things that need doing.

(6)Allow yourself to start small – Being in hospital may mean that you come in contact with many families. Sharing experiences, tips and tricks about what works and what doesn’t can top high during discussions amongst parents. The level of organisation and knowledge shown by a family you meet may seem overwhelming. It can pressure you into thinking you stand no chance with your own child. But it’s not true though. Most other families have had time to deal with their child’s illness. You may just be at the start of your journey with your child. It may be that you are still coming to terms with your child’s diagnosis. So don’t be too hard on yourself or else you risk selling yourself short. Strength lies within you but you will only tap into that strength if you start now to believe in yourself. Perhaps, If you knew that family at the start of their journey with their child, they may not have sounded as strong as they do today. Everyone has their beginning.  So this is yours. Rome was not built in a day. Your journey is like your Rome, you need time to build it – to find your rhythm. Listen to others for tips and tricks, but stay true to yourself. Every child is different. So believe in your ability to know your child. You will then be more relaxed to spot signs, know how to access help, get the child into hospital early and so on.

(7) Give yourself some credit: it’s easier to look back at what you have achieved with your child than to think too far ahead about the future when your child has complex health needs. Thoughts about how your child will cope, how his/her adulthood will be, the implication(s) of the illness for your child and so on can be both physically exhausting and emotionally draining. The truth is that whether you sit here today worrying about the future or not, you will jump the hurdle when you get there. Interestingly, hurdles are sometimes not even as high as you think they are. There are many factors that can affect how you view them. So remember this fact when you stand aside visualising the various hurdles that lie ahead. It is best to wait until you reach each hurdle before thinking about them. What’s more, they may not even be there by the time you race to that point. They may have been removed, blown away, knocked down by another athlete and so on. Spending time today at the start worrying about them may well be a waste of your time, emotions and energy. These can be spent focussing more productively and positively on the challenges posed by the hurdles before you.

(6)You are on your way home – The most important thing never to lose sight of is that discharge is really a good thing. You get to go home, sleep on your bed, be with the rest of your family and so does your child. The familiarity and safety of home will make a big difference to you and your family. If you have other children, then it will be a chance to get to see them and spend time all together as a family. Things will start to settle down gradually as soon as you get home. So it’s good that you go sooner rather than later. Focus on everything good that going back home means to you. Don’t worry too much about how all the routines at home may change because of this discharge. Well what’s the fun with having rules if you cannot bend them to suit you?  It’s really no big deal (well may be it is) but just try not to over think it.

It’s over to you now! I do not feel that this list is exhaustive. So please share with us what is working for you. What helps you prepare for discharge?

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