Dad with brain tumour

Hi

My dad was diagnosed with brain tumour in November. Originally they thought it was a stroke. He's having palliative care at home with assistance of local hospice and 2 carers 4 times a day. At first we thought excessive but glad now. He was admitted to hospital a few weeks ago and was having quite bad seizures despite being on medication. We were being told there was nothing more they could do but he pulled through and back home now. He is having problems swallowing but not every day. Is this normal for end of life or is not swallowing constant. Also he talks in a strange voice like his lips are stuck together but they're not. He has been bed ridden for 4 weeks but believes he can walk and get to commode and even drive to work! Finding it very hard to say he can't and just say maybe tomorrow. He's on 2 syringe drivers which he quite often pulls out and nurses have to reattach. Lot of questions here but answers to some may help. It's so hard. He's like a toddler most of the time and we struggle telling him the truth (rightly or wrongly). He is eating less and we have started ordering pureed foods delivered but he seems discontent but solids seem to make him cough. He also tries to scroll as if using a phone when he has a packet of anything. We struggle finding something to keep him entertained. He seems so bored but if he has a phone he ends up sending stupid messages or wants to get on banking app. 

Sorry such a long message but very hard dealing with someone who doesn't feel like my father anymore. Sometimes you think there's an improvement but only on previous day. 4 months ago he was chatty and normal. It just seems so fast. 

Any advise for any points would be very much appreciated 

Lee

  • Welcome to Cancer Chat, Lee.

    I'm sorry to hear about your dad's situation, and I can only imagine how challenging and emotional this time must be for you all.

    Dealing with a loved one's declining health and cognitive changes can be incredibly tough, especially when it feels like they're no longer themselves. It's natural to struggle with finding the right balance between honesty and providing comfort to your dad. Remember that there's no one-size-fits-all approach, and it's okay to seek guidance from his medical team on how to navigate these conversations with compassion and sensitivity.

    In terms of keeping your dad entertained and engaged, you might consider activities that cater to his current abilities and interests. Simple tasks like listening to music, looking at photo albums, or engaging in sensory activities can provide comfort and stimulation. Additionally, you could explore assistive devices or adaptations that may help him interact with technology in a safe and enjoyable manner.

    Above all, please know that you're not alone in this. There are many people here who have gone through similar experiences with their loved ones with cancer and I hope some of them will stop by shortly to offer advice and support.

    Stay strong, Lee, and remember we're here if you need a chat.

    Best wishes to you and your family,

    Renata, Cancer Chat Moderator