Max, from Swindon, has been coming to Helen & Douglas House since 2014. Max was born in 2007 and has mitochondrial disorder, a condition which means he requires 24-hour care and support. He was previously diagnosed with end-stage renal failure but had a kidney transplant in June 2019 which has made a huge difference to his life.
His mum, Claire, was first told about respite care at the hospice by her community nurse. Initially coming to a hospice was not a place they would have chosen to visit, but they soon realised that as a family Helen & Douglas House would play a vital role in their lives. It gave them the lifeline they needed to help them to recoup, both physically and emotionally, and the chance to have a short break from providing full-time medical care to Max.
‘We have only been coming for five years, but it is hard to remember a time when you were not there for us.’ Claire, Max’s mum.
On a daily basis, Max needs constant adult support to help administer his medication, give him his food and drink and to adjust his body positioning throughout the day, as well as having his blood pressure monitored and weight recorded daily. Before Max had his kidney transplant he also used to have dialysis every night. This would take an hour to set up and ran for eight hours every night. He no longer needs this as he had a kidney transplant in June 2019.
‘Max had his kidney transplant 9 months ago and he is doing great. The difference it has made to his life (and ours) is incredible’.
Due to nature of Max’s condition and level of care he needs, Claire said that they don’t have anyone else to help with his 24-hour care and it wouldn’t be safe or fair to leave Max with family or friends. This means that family life can be tough at times and even going out for the evening or going to the cinema takes major planning, if they even get the chance to do this type of thing at all.
‘If we didn’t have Helen & Douglas House our lives would be much tougher. When we stay, we feel relieved because we know life will get a bit easier. We rely on those days to be able to recharge to ensure we can continue to give Max all the care he needs.’
When they come for a stay, Max gets the care he needs, whilst the rest of the family stay in the family flats. Max’s sister, Eva loves staying away from home and it is like an adventure for her. Max really enjoys his stays as he gets important one-to-one attention, as well as mixing with other children and adults outside of the family. He has lots of fun in the sensory room and gets the chance to chill out on the waterbed, whilst surrounded by lights and being read his favourite stories.
‘Helen & Douglas House is a lifeline for us, and very important to our family. During a stay we can worry a little less (for a few days), and not think about meds, his fluid intake and feeding and preparing his food. It gives us much needed time to catch up on the many hours of lost sleep and enjoy time together in the evenings. We also get the opportunity to take Max’s sister, Eva, out without have to stop to look after Max, and we can do things with her such as a family movie night together.’
Max also finds music sessions beneficial as he has the opportunity to make lots of noise, singing and shouting, all whilst enjoying the sounds of the instruments being played. It is clear has a lot of fun with the music teacher are there are all sorts of giggles when it is music time.
Max has a great relationship with everyone who cares for him at Helen & Douglas House and as a Mum, Claire is confident that all his needs are met to the level that is needed, with his care plan followed so she knows he gets what he needs at all times.