We’re always saying how important it is for parents of children with liver disease to take care of themselves. This is often easier said than done, particularly if your child has to spend long spells in hospital. Clare knows more about this than most. Her son, Harry, (pictured above) is just recovering from his third liver transplant and has spent many weeks in Birmingham Children’s Hospital. We’re very grateful to Clare for sharing her top coping strategies here.
As every parent knows, each hospital admission is a different experience but here are the things which have been of help to us each time.
- Have a routine – something that you have control over. Something that you normally do at home and can also do in hospital or parents’ accommodation is a good idea such as doing the laundry or cooking a meal.
- Sometimes, reading a really good book can transport you away from the immediate location and give your nerves a break, as can colouring, stickering, or in my husband, Simon’s case, learning a card trick!
- Get some fresh air – even if it’s city air. Simon and I did over 25,000 steps in Birmingham when Harry was in theatre in December. It was cold, damp and miserable, but for us it really helped. If it’s pouring down or there’s any other reason you can’t leave the hospital, pacing corridors instead can help. Anything that physically wears you out will help switch your brain off and allow you to get some rest (which is much needed).
- Make time to talk. As we have a younger child in school, we have had to tag team and commute to the hospital over 16 months in total as one of us needed to be at home with him each night. This meant Simon and I had very little time together. So whenever we are at home, we try to spend time as a couple – we actually had lunch out the day before we had the transplant call. Just a coffee or a walk can be so important. If you are both walkers or runners, doing this regularly together provides a good opportunity to chat. If you’re not, go for a drive – being side by side encourages serious talk more than facing each other.
- If it’s possible, try to keep working. In the past, I was a teacher so I was signed off during admissions. Over the past few years I’ve been self-employed so have no form of salary if I don’t work. More recently, I have continued working fewer hours throughout many admissions. It did add stress, but I’d describe it as good stress. Not only was I still able to bring money into the house but I had a role other than being Harry’s mum (which was really important to me). So, although I completely understand that it’s not an option for everyone, our advice would be to carry on working as much as possible.
- Health is health – physical or mental – so make sure you eat proper food and stay hydrated. Pop vitamins in your bag. Take home cooked frozen meals to defrost in the ward microwave – I’m vegan and city centre convenience shops are no use. Take a water bottle and lidded coffee mug.
- Listen to the needs of your other children as much as you can. Last summer, when our younger son, Sam, wasn’t in school, we all relocated to the hospital which was easier and cheaper than commuting. We used Ronald McDonald House to cook and eat together as a family. The boys set their Playstation up with a monitor in the room and played together. Last Christmas Sam reached a point when he couldn’t face being in the hospital and stayed with grandparents instead.
- Take any additional help you can. The hospital might offer, but they will forget about you as soon as you leave the building (you’re not their patient). So use any counselling etc that your GP might offer or, if you can, consider paying for such services. Similarly, physiotherapy can help with injuries picked up when sleeping on hospital chair beds!
- In the same vein, take up any offers of visits from healthy family and friends – this is also important for older children. Harry had lots of visits from his two best friends whilst in hospital and it really helped. Just make sure the friends are fit and well, and can cope with visiting a specialist ward.
- Get to know all the local coffee shops and cafes so you can mix things up a bit.
- Very importantly, Harry has pointed out that having a good relationship with the ward staff can help. For long termers (like us), you’re going to see more of the nurses, auxiliaries, play staff and hospital school teachers than you’ll see some of your best friends. Get to know them. It makes life a lot more bearable. Talking to other parents can help, but this is very situation dependent and sometimes you simply can’t take anything else on board.
- Be kind to each other. Simon and I have leant on each other so much over the years, but there will be times when you are under so much pressure that a harsh word might slip out. Cut yourself some slack – you’re under huge amounts of stress.
- Give yourself time and space to adjust to normal life outside hospital. If you need sleep, don’t beat yourself up. You’re probably exhausted.
- We certainly don’t have all the answers but these are things that have helped us during our (considerable) time in hospital. It’s hard going and scary. Take each day as it comes and try to plan nice things to look forward to. We’ve found Booking.com, Airbnb or Expedia are all good distractions.
