The coronavirus pandemic has been a difficult period for everyone, but for Karen and John shielding six-year-old Max, it has come with additional challenges. Along with their two-year-old daughter, Martha, they have adapted to a new way of life and cared for their son differently. John has been working from home during this period while Karen has been furloughed.
Max is six years old and is living with an undiagnosed genetic disorder which has left him non-verbal and unable to do anything for himself as well as having complex epilepsy with different kinds of seizures every day.
Two years ago the family started getting support from the Rennie Grove children’s hospice at home service and have used a variety of the services since then and, although the way in which they’re receiving support while shielding has changed; the knowledge that the support is still available has been immensely reassuring.
Karen says, ‘We heard about the children’s hospice at home service when Max started at a special school and Martha was just over one year old. They started helping us and it was just great having somebody who can sit with Max after school while I picked up Martha from nursery and understood Max’s needs or what to do if he had a seizure. It meant that I didn’t have to move him around or get him in and out of the car just to pick our daughter up from nursery which was really useful.’
‘We also really enjoy events arranged by the Pepper Foundation and Rennie Grove where we get to meet other families and go to places where the facilities have already been checked out so that’s been brilliant. We’ve also been in touch with other families we’ve met who want to support each other, especially during lockdown to check how everyone’s doing. It’s nice not having to explain to people as they understand what life is like for families like us.’
‘We also really enjoy events arranged by the Pepper Foundation and Rennie Grove where we get to meet other families and go to places where the facilities have already been checked out so that’s been brilliant.’
The Children’s Hospice at Home team offers 24-hour support and although the family hasn’t had to call for help out of hours while shielding, they have still found it comforting to know it’s an option. Karen says, ‘It’s great to know that you have 24-hour support and someone you can talk to. Even if they don’t have the answer, someone is there to discuss it with you and that’s so comforting. Especially if you get to the weekend and know he’s not great, it’s good to know they’re there. It’s quite a small team and they have regular meetings so even if we haven’t met that particular member of staff you get a feeling that they know him… Sometimes there’s a lot of pressure on us as parents to make these judgement calls and it’s nice to share it with somebody else which we’ve done at other times.’
John adds, ‘The nursing team liaise with the other services involved in his care or his consultants and have arranged meetings with the rest of his team to have a multi-disciplinary meeting on a couple of occasions to discuss his needs.’
The importance of being cared for at home
It’s very important to Karen and John that Max is cared for at home, and with the nursing team liaising with other organisations that support Max’s care this has meant that their wish can be respected. ‘They really understand where we’re coming from and when he has been really poorly with seizures and vomiting there was the option for him to be admitted to a hospice but we didn’t want to do that and wanted to shield him as much as we could. Together the two teams really tried to work together and by phoning us frequently to get an update and they could plan so each time we’ve been able to keep him at home’, says Karen. ‘And we had the option given to us and were able to make a choice and feel supported in that choice.’
It’s very important to Karen and John that Max is cared for at home, and with the nursing team liaising with other organisations that support Max’s care, this has meant that their wish can be respected.
Since lockdown, the face-to-face support in the home has ceased but Karen and John still benefit from the nursing team’s involvement in Max’s care and can call on them at any time with any concerns. ‘The nurses have been phoning regularly to make sure we don’t need anything and helped with Max’s recent medication change and taking care of things so I don’t need to and this has meant that we’ve been able to stay at home which is what we’ve wanted,’ Karen says.
Life in lockdown
Trying to explain what life has been like for the family in lockdown, Karen says, ‘Max has seizures every day and several types of different seizures. He just needs everything doing for him, he can’t do any activities on his own so like with our homeschooling most of the time it’s just me trying to do things for both of them. Martha, she’s only two, but she likes to do things to help him.’
The couple also has to manage the reality of what life will be like when normality does return and consider what would happen if they were to be unwell saying, ‘If we both get ill enough that we can’t care for him or have to completely isolate, we’re really stuck and if it’s just one of us then the other is having to deal with both of them all the time on their own which is really hard. But if it’s both of us it makes you think we don’t have a back-up plan. We have no one else who can care for him so it is a big worry.’
They also have to consider what would be best for their daughter who is not going to nursery due to shielding Max. ‘We also feel Martha would benefit from nursery when things get relaxed but is that the right thing to do? It’s really hard to know – nobody knows, that’s the problem isn’t it?’
However, the family is looking forward to the services resuming when it’s safe to do so, although they have very much enjoyed the online story-telling and crafting they’ve been able to get involved in, and has led them to continue crafting together! They’ve also taken advantage of the beautiful weather by enjoying time in the garden barbequing and getting the paddling pool out.
Karen continues, ‘We feel that organisations like Rennie Grove will help us get back to normality as a lot of what they do is about quality of life and that’s why all the activities we do with them are so wonderful. Sometimes Rennie Grove support us to go on trips and try new places. Having someone else there makes all the difference – you wouldn’t want to spend all that money and it then be a disaster. Which happens! So it really is about quality of life with a child as complex as Max as we don’t know what’s around the corner.’
Supporting hands volunteer service
Another service the family use is Supporting Hands, where a volunteer comes to their home and plays with Martha so that Karen can prepare tea or sort out Max in some other way. Although lockdown has meant these visits have halted, their dedicated volunteer has called to speak to the family as well as dropped off an Easter card for Martha.
Karen says, ‘It’s such a holistic service in that it looks at all areas and our volunteer, Rachel, came out with us on our trips in the holidays, otherwise I wouldn’t have had that extra pair of hands to go anywhere. She’s got a great relationship with Martha. It is that they look at all the areas of what they can do to help him which has been brilliant. I think it has been life-changing for us to get Rennie Grove, it’s all of it, the whole package.’
John adds, ‘It’s not particularly one thing, it’s all of it.’ The couple has shared how the involvement of Rennie Grove has impacted Max’s and the whole family’s lives and, although lockdown has been testing, the knowledge that the support base is still there has made a massive difference.
Karen concludes, ‘Even if you don’t use all the services all the time, whether that’s the 24-hour support or whatever, it’s knowing it’s there. We didn’t have a volunteer for a long time but we knew it was an option and then thought actually let’s give it a go and it came at a really good time and she’s become a part of our network of support. It’s all brought lots of positive things. We have been very lucky, it’s an awful situation for everyone, but knowing that with such a complex child you’ve got people at the other end of the phone that can help out wherever needed has made a big difference.’
The Pepper Foundation works together with Rennie Grove Hospice Care to ensure that the families of children like Max have the support they need. Without the help of people like you, this service may not exist in Herts and Bucks. You can support the work done by the Pepper Foundation and Rennie Grove Hospice Care by sponsoring an hour of nursing care for £28.50 or making a regular monthly contribution.