Towards the End

Thx Alex for taking the time to answer. My biggest worry is that my mom already has left sided weakness, if her right side gets affected too & she becomes totally paralyzed prior to her passing, she will be devastated. I'm in constant stage of worry as what will be the next decline.

Morning Jenaa,

I get you worry completely. My mum also had left side weakness. If it is worth anything, it thankfully did not affect her right side at all. On her final CT a few days before passing, we did see quite severe mass effect on her brain, yet it still didn’t affect her right side. 

of course everyone will be slightly different, but I hope hearing this provides you with a little bit of reassurance. 

take care,

Alex 

Thank you Alex for your post 

my husband and I are nursing his brother who was diagnosed with a terminal brain tumour in January.

He came to stay with us for a few days and collapsed..after a short stay in hospital he was diagnosed with a terminal brain tumour and the neurosurgeon said treatment wouldn’t make a difference..but to enjoy the 3/6 he had left..

His wishes were to stay with us ..he does not want to go into a hospice but die at home .

His decline has been rapid ..

he is now bed bound ..mostly in continent..

His speech is difficult to understand..but once in a while he says clear words .

He cannot feed his self ..

we have full palliative care support ..and carers coming in twice a day ..

today he hard seizures for an hour …nurses and Doctor came to see him .

Its hard to watch his decline ..but we love him and want to give him the best care possible and carry out his wishes ..

It’s not easy for us ..I miss us time ..I’ve gone through a wave of emotions..

but our love for him has grown stronger..

just a bit scared of the days ahead ..

Our son gets married in two weeks ..we have care for him coming to stay ..by people who love him as much as us .. but the shine has gone out of the wedding.

what can I expect the days ahead to look like .

xxx

wednesday 27th March 7:31

since R .. seizures on Saturday..his decline has plummeted..

He hasn’t eaten or drank ..I keep his mouth moistened with a gel the nurse gave me .

He is sleeping ..but not peacefully..nurses have given an injection to help ..

He breathes very loudly and then seems to hold his breath ..and then breathes loudly again …

He has opened his eyes for just a few moments .

X

hiya, 

im so sorry to hear about what’s been happening. It sounds like it’s been an absolute rollercoaster. 

I wish I could give you a step by step breakdown of what to expect, but it’s just varies so much person to person. 

I see some similarities with my mum here, so I understand your pain truly. 

if we are talking the “final days” I hope they are as peaceful as they can be. From experience with my mum and talking to others, we could expect to see them sleep a lot more than usual, perhaps even just not waking up from a sleep and remaining unconscious. 

you are doing an incredible job honouring his wishes. I can imagine how this has turned your family upside down. It’s horrible. 

While things might seem impossible right now, you have to make  the most of the good days ahead, such as your son’s wedding. These moments will help you and your family get through this. 

sending love to you, you’ll be in my thoughts in the coming weeks. 

as always, feel free to ask whatever you feel like! 

alex :) 

Hi Daydreamer xx 

I lost my dad in November, and I found a lot of similarities in this timeline that I found … 

https://www.brainhospice.org/brain-cancer-hospice-symptom-timeline 

Obviously everyone is different and this isn’t a one size fits all but I felt I really needed to prepare myself for what was happening in the end stages and this was a huge help for me. 

My dads final couple of weeks of course were desperately sad but honestly… We’d known that this was how it was going to end, and living in the limbo of not knowing when it was going to end, but seeing him slowly decline and lose who he was, was for me one of the hardest parts. 

You’re doing so well 

I do hope you manage to enjoy the wedding xxx 

Hi DayDreamer

My husband suffered from GBM and he passed away on March 12th, exactly 13 days back. What you have mentioned was his exact condition in the beginning of February - bed bound, in continent, not talking much and occasional few words, couldn’t feed himself and occasional focal seizures. This pattern continued for about 2 weeks and one day he suddenly didn’t open his eyes at all. We still managed to give him breakfast, lunch but after that he never ate. He was moved to hospice and after 4 days he passed away. His death was peaceful as the hospice team are true angels. He was not in any pain and was in deep sleep state. 
Having said all the above, pattern is different for each individual. Take each day as it comes. Make the most of your son’s wedding. Don’t think too much about the next step. 
sending all of you a big hug. It’s not at all easy when you are caring for your loved one. 
jyo

Thank you for taking the time to reply and your kind words .

i know. It must be a very difficult time for you ..and I send you a big hug and much love ️…

The palliative nurses have fitted a syringe pump today ..to administer pain meds ..hopefully no more seizures.

xx

Wow. Amazing family support x good luck to you all x

Thank you for your kind words..

Caring for R ..has been the easy bit ..hard watching him  deteriorating so quickly in such a short time ..and feeling totally helpless at not being able to do anything about it ..

But what I’m finding hard is the amount of people coming and going .. family visitors , nurses ..carers ..( 12 in total per day ..caring from 9am until  9 pm )

I No it’s not going to be forever..and I look forward to the day when it’s just me and my husband..does that sound terrible?

xx

Thank you for the link ..it was really use.

…I recognised each sign as I read through ..

I think we are vastly approaching the end ..

1. Sad heart ..but relief that R’s journey hasn’t been to long and to painful..️