My sister is a single mum of three terminally ill children, what can I do to actually help & support her through this unimaginable nightmare?

As the title says, my sister is a single mum of three terminally ill children. As a family, we rally around her and support her as much as possible, coming with her to appointments, helping with the kids, and of course emotional support, however, my sister is stubbornly independent, and generally struggles to accept help, much less ask for it.

Over the past month or so, her eldest has begun to rapidly decline, and though we’ve been on this journey since their diagnosis five years ago, it is now happening in real time, and it’s not subtle anymore. This is really happening, and it’s going to happen thrice over.

For context, the kids have been diagnosed with Niemann-Pick Disease Type C (NPC), a for of Childhood Dementia — a horrifying genetic disorder with no cure. All three of her children will progressively lose skills, such as the ability to write, read, talk, walk, and play, this cruel disease will take everything from them, eventually unable to speak, swallow or recognise the faces of their loved ones. This can happen over months, years, or decades, as the child’s brain slowly deteriorates. This deterioration eventually leads to the inability to keep the body functioning properly and, eventually, unable to keep the body alive. Average life expectancy is only around 7 years, her children are currently aged 7, 9 and 10.

My sister has been incredible, she’s done so much to bring awareness to the little-known horror of childhood dementia, used her voice to advocate for families living through this, and been a driving force for change, funding & research. But it’s all getting very real now. All three kids have slowly fell out of pace with others their age, no longer able to keep up, play and learn, the decline has been subtle but stead. Her eldest experienced his first seizure about four weeks ago, and has had two more since. We have been living on borrowed time, we are terrified now, and terrified of what’s to come.

I have offered to link my sister in with support groups/services, help her to navigate the NDIS & get the support she and they need, or just stay over a few nights and ease some of the mental load, she always declines. I feel helpless and even though I know there’s nothing I can do to change anything, I know that there ARE little things that can and do help. It’s not sustainable for my sister to go on functioning the way she is, she can’t carry all of this, all on her own, all of the time.

I’m thinking of doing a few weeks of meal packs to help with weeknight dinners, with everything prepped and ready to go (kind of like HelloFresh), so she only needs to cook or heat. Whenever she relents and accepts practical help I do things like clean the house, gardening, washing etc, I’ve offered to be there and with the kids so that she can have an hour or ten to herself, but she can’t or won’t. So my question is what CAN I do that will help, ease her load, and can be done in a way that she doesn’t have to ‘accept’ it or anything, I can just do it. Please. Please help me help her. I’m terrified and heartbroken and I can’t hold them all close enough 💔

If anyone is interested in her story, through her advocacy there’s quite a bit available online, I’ve linked an ABC story here , there’s a bunch more, a few brief news segments, and she’s spoken on a couple of Podcasts (The Deep with Zoe Marshall, Sh!t Talkers with Kellie Finlayson, and Mothering on My Own). She’s incredible, she’s powerful, but she can’t hold all of this on her own.

TL;DR: How can I support my sister in tangible ways whilst she cares for her three terminally ill children. Please