My son has terminal cancer and complex care needs

My son is 30 and I recently found out he has cancer that has spread through his body . He is non verbal autist and bi polar . He also suffers with epilepsy and heart problems along with other health conditions . I am really struggling as so hard to know how to help him . He struggles to swallow now so medication is a problem and he no longer wants to eat . Any tips on helping him through this awful disease . It is so heartbreaking to not know what will help him . 

  • Oh this is so heartbreaking. I don't know with the epilepsy but sometimes a good sensory set-up (they used to have a beautiful starlight room at the hospital) recreated at home can help make a difficult time more bearable especially for someone non-verbal. Something really soft and soothing. Also textures. But you probably already have a lot of this and it's not so much dealing with the cancer as making him more comfortable. Have you tried things like ice-lollies to quench thirst and give a bit of nutrition? Can he take anything in with a straw – may help with less food going into the mouth or is co-ordination not there? Sippy cups again might sound stupid but can help with avoiding too much in mouth. I think it is very much a case of trial and error and being a bit creative as obviously you know your son best when there are so many co-morbidities. Also put small items of food on a plate that can be just picked up and put in mouth if desired in a creative way. Comfort food. Textures. You'll instinctively know how to run with this but do open up your mind, try some different things, and maybe not worry too much about your son's age. Do things that are FUN. Experiment. Good luck because this is a very tough situation and I really feel for you here. It is heartbreaking and you need a lot of strength. On the medications front, please speak to the pharmacist as it depends on the medication but sometimes format can be changed. Pharmacist is best placed to advise. Never crush pills without checking if safe with pharmcist given how some are designed as it can be dangerous. Often it is best to try and get a special liquid or patch formulation (some liquid formulations are known as "specials" and are made up specially not generally available where there is a need such as dysphagia). Also do speak to your son's doctors about the dysphagia. Do you have a specialist therapist helping you manage this? If you do find this post any help at all please feedback if you can – also if you don't find it helpful– because it may help someone else. I just know from experience that with your son's co-morbidities then any anxiety/feeling thrown by the cancer will worsen dysphagia so getting him as relaxed as possible for any "eating" event is going to be key. So if that means eating/sucking while watching TV or stroking something then do that as long as it is safe and there is no choking risk. Sending love and hugs because it is truly heartbreaking what you are going through. xx

  • Thank you so much for advice . I have done most of the tips but will be trying Everything you said . Hospital wasn't good with his complex needs so feel like I have to cope at home . My boy has suffered dysphasia all his life but loved food so we managed well . Now he just doesn't want to try .  Im scared this is him giving up . Im praying not . Thanks again for taking time to help x

  • It's a very scary time for both you and your son. Even I start getting mild dysphagia when anxious and sometimes go non-verbal. Dysphagia is the most horrible sensation. Everything must feel incredibly overwhelming for your son right now. I have also experienced issues with hospitals not understanding complex needs. It's so frustrating. Please take care to look after yourself too. I hope you aren't all on your own and have people who can help share the load or can reach out to a hospice out-reach team such as Marie Curie. Hospices do respite care so it's not just end-of-life and might also be able to offer advice on the eating. x