A place for people affected by brain tumours or brain cancer to support one another...
My dad was diagnosed with a stage 4 glioblastoma in April 2017 and despite some lows, has been in relatively good health until he endured a bout of seizures in November that left him with affected speech. He then went in for his second ‘debunking’ operation at the start of December and since then, it’s like he’s declined so fast it’s unbelievable. He’s lost the ability to walk, his right side is pretty weak, his speech has been reduced to yes and no and he’s also lost sight in his left eye. Not to mention issues with incontinence and confusion.
Looking at him now, it seems he’s displaying all the end of life symptoms that present in patients with brain tumours and I can’t help but see his current state and wish it would all end soon. It’s so heartbreaking and I just know how sad he is about being bedbound and having round the clock care.
I just wondered if anyone else has gone through this stage and knows how long it can last for until it’s truly the final days. Doing my best to be strong for my mum but I just want him to be out of pain and not having to struggle to survive every day anymore.
I'm sad to read your post Rebecca. I went through this with my own husband earlier this year. In our case, treatment was not an option. My husband declined very quickly after his biopsy and subsequent diagnosis but an increase in steroid meds brought him a brief respite when mobility and speech improved. Eventually though, these stopped being effective and his mobility and speech gradually worsened - he had some falls and speech dwindled to to yes and no but then even these got confused with was very frustrating for him. All of this happened over a period of about three weeks, and he became incontinent in the last few days of this time. Eventually the home care system collapsed - it had not really existed and when it was needed just wasn't able to cope - and we moved to hospice care where we stayed until he died peacefully at the end of four days. I understand something of what you are going through, truly, and send thoughts and prayers to you and mum. Your support and love must be so appreciated by your parents.
Thank you for your kind words JJ59. I’m so sorry you’ve had to see someone go through this awful disease too.
In the past day he’s started declining food and sleeping a lot more and it seems we’re entering those final few weeks.
I’m concerned that my mum doesn’t seem to grasp that these are all typical ‘end of life’ symptoms - whenever I try to suggest we contact the nurses to get daily palliative care, she brushes it off and closes up. I know how much she’s hurting but I just want her to understand that dad deserves to go peacefully and without the hassle of pain or trying to be co convinced to eat when he physically can’t.
HI, Rebecca44. How are things with your Dad?
I am trying to research end of life symptoms and stages with my dad, who has a brain tumour. He has been in a nursing home since July 2018. I go every Saturday to have lunch with him, this last couple of months, he is not really "with it" staring out to space, needs help eating and drinking and sleep about 18hrs a day.
Home called me this week, he has shingles and is refusing food and water just wants to sleep, the nurses are still trying to get his tablet meds down him, and trying their best to keep him hydrated.
There is only me and my Dad, I'm 41 he's 66.
Appreciate your thoughts.
Hi Rebecca. My husband had GBM4 and died in October. I kept him at home and cared for him as best I could. But would not have been able to without the local hospice help. When he moved to palliative care we were put in touch with the Gp and hospice and they worked together. It started with one carer per day and quickly moved to four times a day. These were Council organised all funded. Then daily nurses. Pattern was that he struggled to get out of bed, then couldnt, so you have incontinence issues. Then slept more and more, ate less and less. Couldnt talk for the last two months. When he could no longer swallow meds they put him on a syringe driver. He passed away in days. Please ask for help. It's hard enough with help. I would imagine near enough impossible without. Before he became bed bound there was a lot of confusion and he couldnt clean up after himself. x
Trish can I ask you a question. How did you cope with incontinence at home? I am trying to get my dad home from hospital but his incontinence is a huge problem the hospital staff aren't able to manage it a long story but frankly I don't think they are trying too hard.
Just wondered how you managed at home
Before he is discharged he should hAve a social services assessment done by the hospital in house team and they will adesso any equipment he may need for instance a commode and pads for incontinence and may also put care plan in place for carers to come in 3 or 4 times a day to change and clean him up with personal care. You must ask as well as if you don't ask they may assume you are going to manage on your own. It also should be fully funded if it's end of life care. Please ask ask ask. Do hope this helps.
end of life symptoms showed with my mum from March but she fought until July 18.
sleeping a lot, severe confusion, lack of mobility, urine infections amongst lots of other infections, shingles on surgery area, loss of bowel control, tremors.
i dealt with mums loss of bowel control by lots of old towels, value baby wipes and gloves.waterproof sheets on beds.
To much information I am sure but if the person has diarrhoea then nappies and pads make it more difficult to cope with.
Anything to keep her at home. It wasn’t pleasant but my dad couldn’t deal with it so I had to do it .
I also used a Sara steady machine from March - June to get her from the bed to the commode.
whilst she still had some awareness of what was going on
however, sometimes it took both me and my dad to lift her and hold her and she had no balance and was incredibly weak. She also didn’t know her sense of direction so had to physically move her,
But the Sara steady was a great help. Although it was still awkward if mum was having a particularly bad day.
that if patient has a fall then the in home carers will not be able to move patient.
I quit with the carers and did it with my dad. Also my best friend helped out a lot as she was previously a residential carer so was able to help move mum if she fell.
She would also give mum a wash and help to give my dad some respite. Although dad would never leave the house even if he had chance.
absolute end of life will be or can be
no longer able to swallow, mum had a seizure that caused this. Her only seizure.
so the driver will come in, this slows everything down,
i had a dreadful time with the driver as the batteries ran ouf, so mum was in pain for 12 hours whilst the driver was cutting in and out. Not the nicest of memories.
then she slept even more, couldn’t speak, refused food and fluid, this is when you know the days are short, as a person has limited time without food or water.
The urine will become very dark and smell strong as the body is shutting down.
Then the chest will rattle as the person is no longer to control their breathing or cough, the phlegm hits the back of the throat.
The nurse can use a suction device to ease the chest but it’s more to stop the distress of the family listening rather than the patient. As the patient will not be aware of what is going on.
My mum was 67 when she passed. I’m 27. Not a day goes by When I do not think of her.
But when she was going through all of this I wished her to pass, to be free of the pain and loss of dignity it causes.
feel free to message me if you have any questions.
Best of luck x
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