We are caring for my brother in law at home .. he was diagnosed with Glioblastoma brain tumour in mid January.. He was given 3/6 months..Treatment wouldn’t change the outcome..and he decided not to have biopsy or any other treatment…His decline has been …

Hi Daydreamer 

The way you are looking after your brother in law is admirable. Honouring his wishes to be cared for at home is something you will be so immensely proud of when all is said and done. 

I think it’s natural to constantly question whether you are doing the right thing. It sounds like the hospital bed is something the district nurses would prefer, but ultimately they’ll just have to work with the situation, and this is the way it has to be to be able to give your brother in law the end of life that he chooses. 

I don’t think you will look back one day and wish he had a hospital bed. You really should be so proud of yourselves. 

Keep going xx 

Thank you for your kind words xx

Hi Daydreamer

oh my heart breaks for you. You are doing an incredible job in the most difficult situation. There is no perfect path  for this journey. You are doing your best and that is more than enough. There is nothing to feel guilty about at all.

I'm sure he is so very proud of you for taking such good care of him

Please reach out here anytime. We're here for you. You're not alone.

For now  though I'm sending you a huge virtual hug and lots of strength. You will get through this.

love n hugs

Wee Me xx

You are doing so well caring for him. He is where he wanted to be because he trusts you both. As WeeMe said you won't think about the 'what if' you will just be glad that you both did all you could.

The final period of time is so tough, it is all consuming but let the palliative team help as much as they can and accept any other help you think is appropriate. 

Hold onto each other as well. It's a roller coaster.

Sending hugs.x

Thank You for replying, 

its good to know someone is listening..that’s a great comfort..

just had a bad night and needed to put into words how I was feeling ..

R temp was up to 39.5 this morning ..rang hospice at home team ..said I was to cool him down with a wet cold flannel ..leave him with just a cotton sheet cover ..managed to get temperature down .

He hasn’t opened his eyes at all today ..breathing quiet heavy ..then he seems to hold  his breath for 20 seconds and starts breathing again…

passing hardly any urine ..but he isn’t drinking..so I guess that’s expected..

I feel the end is near .. I’ve told him it’s ok to go ..don’t be frightened..we love him and we’ve got him️ xx

Thank you Wee Me ..

It’s good to know we have people like yourself..that are voices are heard ..

xxx

It does sound like he is in the final stage now. It sounds like he is pain free. I am guessing that he has a syringe driver?

Just both of you be with him. I told my husband that he could go now, that I would be okay and that he could rest. It is one of the hardest things you will do but it is with so much love.

Hi Daydreamer

omg that seems so familiar. This was exactly my husband’s state 2-3 days before he passed away. There was few seconds of pause between every breath. My daughter and I use to count and it was mostly 20-25 seconds. Keep talking to your  BIL, tell him all the good things he has done. Sending you all a big hug. Take care. It’s not easy. Loads of love 

He had a syringe driver fitted last Sunday or Monday (sorry days all seem like one )..

He had seizures for 1.1/2 hours last Saturday night ..the first few days he did open his eyes for a couple of minutes..but not at all today

Sat with him listening to The lords my shepherd..sung by Stuart Townsend…such beautiful words ..I know he can still hear ..xx

Have the palliative team increased his anti seizure medication in the pump?

Music is so soothing so keep on playing it and talking to him