HOW TO HELP A FAMILY WITH A CHRONICALLY ILL CHILD

Our family in a hospital room

Helping a family that spends a lot of time in hospital can be difficult. We have spent months in hospital, and have come home from hospital so many times. I know that people struggle with how to help families like ours, so from my experience, here are a few ways you can make a small, but big difference. It can be difficult to receive many messages asking ‘what can I do?’, when you are busy asking that of yourself. From my experience the more practical the help, the better it is. As isolating as these experiences can be, it was also challenging at times to be getting message after message of concerned people not knowing how to help. To offer to help in a specific way will be more beneficial as the parent can decide whether they actually need that specific help or not.

WHILE STILL IN HOSPITAL

The emotional, financial and physical toll these admittances can take are huge. And there are many contributing factors.

The expenses of living at a hospital are significant. We live 96km away from the hospital that the girls have to go to, and although the hospital has travel and accommodation assistance for those who live 100kms away, we fall 4 kms short of this. When a child is admitted, one parent is also.

Hospital expenses very quickly add up, and come in the way of parking, accommodation, food, and any other essentials if they are required. As the parent it is easy to live on toast and coffee, as these are free and there is a never-ending supply. It doesn’t do much for your mental strength or your waistline for that matter. So the first thing that can help a family whilst in hospital is;

• Prepare food. Prepared food for dinners, lunches, and even breakfast. Fresh food also. I love my fruit and when some was brought to me it was like gold. It not only replenishes some well needed nutrients, but it's definitely better than toast and coffee.

• Organise a volunteer to sit with the child, so you can either take the parent out for a break, or the parent can take themselves out for a break. This can depend on the child's illness, and depend on the volunteers available, but it's an inhouse tip and can usually be organised quite easily, through every ward clerk on the ward. Call the ward the child is on, and ask for a volunteer to sit with the child so that it can allow the parent piece of mind that the child is not alone, but also allows them a small break. Sometimes a really simple thing like a coffee, tea, hot chocolate and a chat can help the parent feel sane. It gives them a chance to talk, cry, or sit in silence- whatever they choose, but to take a well needed break from the hospital room.

• Offer to help with siblings to allow them to go to school, or just to allow the parents to be together with the unwell child. This could really help the parents focus on things that previously they haven’t had a chance to. During our times in hospital We saw many families of all different sizes and stages, and one thing is definite, it makes for a lot more juggling when the child who is admitted has siblings. Let alone another who is unwell. It is important not to forget the siblings at this time, and to try to keep their normal routine as much as possible. Simple things like school or hospital logistics can prevent the parents from being together, or the siblings from attending school, and a helping hand here can really make a difference. Especially if the family is like ours, and has no family members around to help.

• Offer to bring in something they may need. If you are admitted into hospital from an ambulance, or an emergency run, you may not be prepared. So a stock up on a few things can really help. Such as toiletries, pyjamas, snacks, reading material, special pillow or blanket??

• Support the celebration of special occasions. We spent many occasions living in the hospital. Mothers' days, Fathers days, birthdays, Easter and Christmas. It is extremely hard to make these times as magical as they should be when it's hard to leave. I remember receiving a text from a therapist we used to see for the girls asking what she could do. I often received these texts and would reply with… nothing… She asked if I wanted her to go Christmas shopping for us… Wow- I thought. That was actually something that would have been really helpful. Although I didn’t take her up on it, I have remembered it since. This very practical and genuine offer would have made a huge difference if we had needed it. That year we were gifted bikes from The Ronald McDonald Charity, so had the girls Christmas gifts covered, but if we hadn’t I would have put an order in for gifts for the girls.

Both of the girls admitted at the same time

Returning from hospital

When a family returns from hospital some practical ideas can REALLY help, and here a few ideas:

• Help to have the home ready to come home to. This might be harder to organise but will be so worth it. The stress of coming home can be overwhelming. The mixture of joy, but a whole new regime or diagnosis can be frightening. Depending on the child's illness, they can be very fragile and may need a lot more looking after than usual. And for some, another admission might not be too far away. Not all illnesses are this serious, but it's all relative. If a child has been diagnosed with a chronic illness whether it be diabetes or cancer, there is a weight upon returning home. To come home to a clean space can help clear the mind of the parents or carers to start to tackle the new list of to-do’s for their child, and allow them to play a board game that night, instead of worrying about cleaning the house. “Outer order inner calm”

• Stock the pantry and fridge with Food. A simple thing like a dinner that can be, or is frozen, can help immensely. It can also be a small, yet simple, reminder that someone cares.

• Helping with shopping. The many trips to the supermarkets that come easily for others is really difficult for a family with an unwell child. Some families may already have a meal plan and have their shopping delivered, but for others this will help them not having to try to drag an unwell child out.

• A coffee left by the front door will be a godsend to those who drink it, or need a real one, but can’t get out. Often having people over at this time is difficult. The family may need time to adjust to their news, or to the new schedule, or to being at home again. But a fresh coffee left outside with a text telling them gives them a small gift without the complications of having to leave, or host.

• But if they can get out of the house make sure you are genuine and don’t sugarcoat the things going on in your life. We don’t always want to feel we are the only ones who are battling. Although the battles may be different it can provide comfort to know we are not alone. When I was struggling to make it through the long hard days all everyone wanted to tell me about was their highlight reel. I understand no-one wanted to burden me with what seemed like little problems, but it was at that time I wanted to hear it, so I didn’t feel as isolated...

One last and final thought is to organise a photoshoot for them. The family may not be on board, but these moments are so precious. A professional, or even an amateur photoshoot, but a nice photo of the family to recognise what they have just come through together.

The first family portrait after spending months in hospital

There are many ways to help a family either in hospital, or have just returned from hospital. Each family will have their own needs, and it probably comes down to the support network they already have in place. We had just moved to a new town away from any family or friends, but were lucky enough to be surrounded by a community who supported us in any way they could have. Even the smallest of gestures are noticed at this time, even if we don't text back to say thank you.

No act of kindness, no matter how small, is ever wasted.