Hi TonyMo,

I am so sorry about the diagnosis that your dad received in February. It's just devastating.
 

My dad died on 21st June 2020 after being diagnosed with a grade 4 brain tumour 10 weeks earlier in April. The daytime sleeping and night time activity/agitation, which sounds very similar to what your dad is experiencing, was very hard for my mum to manage by herself even with me and my sister helping when we could. We were able to get support and overnight sits through the palliative care team, so that my mum could at least sleep in the spare room and feel able to cope more with my dad's needs during the day. I wonder if this is something that your family might be open to asking about? Just so that the main caregiver/s can get the rest that they need. 
 

Me and my sister were absolutely desperate for some sort of timeline or symptom spotter and did a lot of research and reading, bearing in mind that all individuals are different. But unfortunately brain tumours/cancer seem to work shockingly fast, my dad's type and grade was no exception. Be present with your dad and say what you wish to say in the way that feels right to you. I am devastated and heartbroken beyond belief at losing my dad but I definitely feel absolute gratitude and privilege that I was able to help to care and love him and be present for his final breath.

Sending you lots of strength and support in the most difficult and painful of times.

Thank you and really appreciate your thoughts,

im absolutely gutted what my dads going through he can't really understand anything your trying to say or do also think his eyes are going ,   He keeps imagining things thinks he can see a dog or a person that's not there,   He got diagnosed while he was told he had a pulled mussel in his neck which it wasn't it was lung cancer that spread to the brain ,  my mums all over the place not handling it or the physicalness to it at all .

really sorry to hear about your dad  

Thank you. My dad had hallucinations and his eyesight was definitely impaired although he couldn't really explain how or what he was seeing. This was following a seizure that he had 4 weeks before he died. He would pick and pluck at his clothes the sheets, he would pretend to eat the bits that he was plucking, he talked about seeing people on the ceiling, he would try to open a locked door (that wasn't there). My mum found this all very disturbing and struggled to cope too but I think my sister and I felt more prepared (as much as you ever can be) as there were certain symptoms that we were anticipating. I would ask dad what he was seeing or experiencing and enter into the delusion with him as I found this calmed him rather than saying there's nothing there or trying to convince him otherwise. If it was something that scared him I would try to soothe him "oh him up there? He's alright he won't hurt you at all." I found it very helpful to read about how to speak to someone with dementia as I felt it was incredibly similar. I also found it helpful to rely on non-verbal language-lots of smiling at my dad, holding his hand reassuringly. The smiling definitely helped when he looked at me and my sister and was obviously frightened as he didn't know who we were. The first time he looked at me with no recognition, I was terrified and looked back at him with my mouth open in terror and he nearly ran away from me because he was so scared-after that I just smiled as brightly as I could with my eyes and face and he would physically relax and smile back. I suppose it's just trying your best to make him feel safe and loved. So, so painful and I really feel for you and your family.

Hi , 

he's so agitated all the time,  he's so tired when he's ready to go to bed once I've given him his last tablets for the night including Lorazepam but about 15 minutes into bedtime he's sitting up and down the whole night and when I ask him what's up his eyes are rolling and he's just looking right through you

My dad passed away early hours on Sunday morning 

TonyMo I am so, so sorry that you have lost your dad. I am firmly thinking about you and your family and hoping that you can take things one day at a time during this painful time. I am hear if you want to talk at all.