I’m finding it increasingly difficult to cope these days, partner has it and he really struggles to talk now, which gets him agitated and frustrated and often ends up shouting at me, as I can no longer understand what he is saying due to the tumour progressing.
It’s not his fault, it’s the brain tumour progressing fast, he’s now bedbound completely, got weeks left, he can’t help it as the executive functions in his brain are literally offline, so I have no choice but to be patient and compassionate.
He always apologises and thanks me for being there for him as well, so he knows what’s happening to him.
But. I’m. Just. F***ing. TIRED. Of. Life.
The prognosis occurred only 2 weeks after my Dad passed, which occurred 4 months after my Mum passed. So its been relentless.
I’m starting to feel resentful of life, and like I must be a sh*t person to accrue so much bad karma. All irrational, but I can’t help feeling this way.
I just want to find some happiness now, even if its small.
Any tips and practical advice welcome (on the glioblastoma/communication difficulties), I don’t mind harsh truths either.
Dear Plutorising, I have no experience with brain tumours at all and I wish I could say something to make you feel better. You are having to deal with a lot and this must be terribly painful and hard for you. Sending you a big hug and hoping you can have some moments of less pain during your day.
Hi Plutorising, I feel your pain and I’m so sorry you have to face such things alone. My wife lost all her strength in a matter of weeks and became bedridden the last week. Even though she had no problems like your partner she became so weak that it was often so difficult to understand her and all I could do was hold her and hug her to show her I was there. At the end there were moments when she seemed stronger and was able to talk a little and then fall into a heavy breathing unconscious state.
I hope your partner has a peaceful ending. I’m sure your love for him is his comfort.
Wishing you strength and courage
All the best
Tom
I’m so sorry you’re going through this @Plutorising. It sounds like you’re emotionally and physically exhausted, and it’s completely understandable to feel resentful and overwhelmed when things are progressing fast. I hope that the kind words from @Anita_66 and @Brandon1 have been comforting so far.
In case it’s helpful, I just wanted to share this page from the Brain Tumour Charity, which has some practical tips for dealing with the communication difficulties that can come from the progression of a brain tumour: Coping with communication difficulties
Take care and keep posting here for support. You don’t have to carry this alone
I must have been stressed, had another nosebleed. When I was at the office and in the middle of a conversation with a colleague, just randomly started gushing blood. My face looked like a murder scene! Luckily only one other colleague noticed and she was really supportive, managed to get to the loos sharpish before anyone else noticed (and freaked out).
I think because its been 3 months of chaos. With my partner, I’ve had to deal with not only the dying process, the loss of the relationship how it was (going from girlfriend to carer), but the severe personality changes from the tumour, angry outbursts from nowhere, and me copping it.
He literally cannot pronounce words, even though he’s mentally sharp, the words are now completely jumbled. Which gets him breathless, and then frustrated.
Not sure a) how much longer I can keep up the endless loving patience, and b) how I will be in future romantic relationships.
Many people here on this forum seem to have had long, happy marriages. I’ve not experienced that. Only had a series of dysfunctional relationships, since the first partner ended his life, up until my current partner, who is dying of a brain tumour that is causing him to almost constantly lash out at me - by no fault of his own, but I still worry about what psychological damage that may cause in the future, and my ability to function in a healthy relationship, which may be nigh on impossible.
He does get quite insecure when I’m not around, and once he settles, he is very loving and gentle. I think because I’m one of his “primary carers” (alongside his sons) he feels comfortable and can be himself around me.
After he simmered down today, he brightened up immensely when I gave him matching friendship bracelets, one each for both of us, he held my hand for ages.
But … its still a rollercoaster, and I felt worn out today.
Hi Plutorising, this life often feels as if we are being tested. You have had so many trials yet your love shines through.
Wishing you all the best
Tom
Hi - i’m so sorry you’re having such a tough time. I pass on a few things which might be useful - or might not. In my mother‘s last few weeks she too was bedbound and the drugs she was on completely scrambled her words. Her brain was still sharp, but her language was almost completely gone. I used questions with yes/no answers, and I had a few stock questions which led to the correct answer (eventually) 99% of the time . I would always start by asking is it something to do with your body? And if it wasn’t, is it something to do with your room then I would say things like is it to your right or is it to your left. It would take awhile but I always got to the correct answer. I also used to read to her when she was particularly frustrated which seemed to help her be more calm and again I would think of two or three of her favourite books and ask would you like X? And if she said no would you like Y until I found one that she wanted and then I would read it to her. She frequently fell asleep while I was reading. As he is now bedbound a lot of what he will be thinking and feeling will revolve around his body and the bed so starting with that as a question is most likely to lead you to the right answer.
In terms of how you are feeling about you and the impact this is having on you, I can only speak for myself, but while caring for my mother at home in her last two months is the hardest thing I’ve ever done, I have never been sorry that I did it. I can honestly say to myself that I did everything I could to keep her safe, treated medically when needed and kept comfortable and that she knew she was loved 24/7. I had to keep my own feelings forced down or I would not have been able to look after her and be cheerful for her and it is taking me a long time to recover physically - I will never recover her from her loss emotionally but I am so so glad I did what I did because I would not have been able to live with myself if I hadn’t.
All of that said, you need support. Is there anyone who could sit with him or if he wouldn’t tolerate that who could sit with him while he is asleep so you can have some time for you? I managed to keep going but if I hadn’t, I don’t know what would’ve become of my mother so you do need to look after you so you don’t burn out. Try and pace yourself in so far as it is possible and make sure you eat and drink as it is easy to let that slide too when caring is full on. You may well want to think about a bit of counselling and support for you in due course, but at the moment one step at a time. I’m thinking of you and wishing you strength and courage. J
I’ve been doing the same thing, but he gets frustrated when I guess wrongly, or ask the wrong question. Using yes/no questions, or the left/right thing, but it still frustrates him. I’m not a mind reader, but I can’t say that to him.
SALT team is visiting this week, yeah a month too late, to try and alleviate the communication problems. They recommended I install an app on his phone, to help him communicate, but he adamantly refused, so their idea was pointless.
Any techniques, he’s just refusing, seems determined to try and communicate “normally” but we know that will never happen.
Not sure why it only seems to be me that he lashes out at, everyone else he’s quiet and polite.
Maybe he just doesn’t like me very much (it really feels that way now)
Getting sick of the NHS too, the different departments don’t communicate with each other. Shall I just do their jobs for them, kinda feels like I already am
Honestly, I don’t understand why everyone romanticises dying and end of life care so much, people are forever saying how well I’m doing, how kind I’ve been, etc, and that at least the dying person is surrounded by love and peace and kittens and rainbows.
It really isn’t. The dying process is awful to witness, I don’t think they go peacefully either, the death rattle is a horrific sound you can’t forget, the terminal agitation is tough to deal with, it’s a long process of suffering and pain with a non-existent quality of life - for both the patient and their loved ones.
Oh but at least you were there in their last moments ….. Yeah, good for me, do I get a Blue Peter badge? I don’t think people appreciate the trauma that the ones left behind have to go through of actually witnessing a loved one die.
Sorry for the rant and sarcasm, I feel like a lion in a cage at the moment. I literally do NOT like my life right now.
I fear I have the answer to that, which is perversely he lashes out at you because he trusts you most of all and knows/feels he can let rip with you about his frustration and fear and anger with his situation. Because you love him and he loves you he feels safe to do that with you. It must be horrible to be on the receiving end of it, but it is a very very perverse form of compliment.
I also know exactly what you mean about the NHS. Nobody communicates and for example nobody told me that the drugs at home were running out (and since they were kept in the lockbox I couldn’t check so didn’t know) and then the district nurse one morning told me that we were going to run out of the drugs within the next three days. Nobody told me either that you can’t just get these drugs at a pharmacy they have to be ordered so I spent the next two days racing around the whole county trying to track down the drugs all of the time worrying I wouldn’t get to them in time to prevent my mother suffering.
Just one another thought which may or may not help. I found that nobody told me about the different services I could access because everybody assumed everybody else had told me. The end result was I missed entirely the existence of a palliative care team that could’ve been advising me. As a result, I then asked every single person of any description who came to the house to tell me about all the services they knew of that might be useful. It might be worth you doing the same? You may gain nothing but at least you know you’ve exhausted all the possibilities.
Are your partner’s thought processes still ok and it is just the speech that has gone or do you think the tumour is affecting his ability to think as well? Has anyone told you where the tumour is and as a result what parts of the brain are likely to be most affected? That knowledge has the potential to help as there are apparently at least 4 different ways Glio. can block communication and I think it would help you to know which cause/s you are dealing with. Apparently there is such a thing as a neuro-oncology team that should be able to advise ?
Dear Plutorising, I’m sorry to hear your pain. You are right there’s nothing worse than being in your situation and I know you are upset. It is so hard but the death rattle isn’t painful at least that is what the experts say. In the case of my wife she woke up from it six times over five hours each time she managed to hug me say a couple of words a fall back into unconscious breathing until her last one where she called her mother. I may have been lucky as I have seen others die in pain, I hope that isn’t your case.
Thinking of you
Wishing you all the best
Tom
Plutorising, please feel free to rant and to use sarcasm here! I think you can do that safely in this forum. I always wonder what does it mean “you are doing great” and “you are so strong” ? I get irritated by that kind of comment because it shows a lack of awareness for the pain, distress and anguish that you might be going through and is an easy way of feeling they said something nice. I haven’t gone through a third of what you are going through and I can tell you I do lash at people when they start saying stuff like that. Just sending my very best wishes your way.
Have to say, I’m rather overwhelmed (in a good way!) at the responses here, they have really helped to ease my mind and knowing its okay to let off steam is reassuring
I think that’s how I’ve been expressing grief, it’s not through sadness or tears, I’ve barely cried, I bottle things up and end up erupting instead.
Thank you for acknowledging this!! It’s useful to know, and it can give me a heads up, as I can already feel a huge ton of resentment building up. Especially as he’s as sweet as pie to the medical teams, and even sometimes laughs it off when his words can’t come out.
I want to prevent the scenario where I end up turning bitter towards him, which will end up cancelling and clouding out the grieving as well as all the good memories we had, because all I would be focused on are the outbursts of anger towards the end.
Maybe even steel myself for a harsh truth, that potentially his dying last words to me may be out of tumour-related anger. Which would in truth would devastate me, but I’ll have no choice but to move past it, and rebuild my life as best as I can.
Omg exactly this! I feel like telling them I’m not training for the London Marathon.
I’m getting beyond tired and fed up of hearing it, I know they mean well and they are genuinely trying to be supportive, but it still feels like a lack of awareness. Like, you call the various NHS teams and see how far you get without wanting to punch the wall, then come back to me and tell me how great I’m doing!
As for the NHS itself, its beyond disappointing. It’s the sheer lack of information, and the very worst part is not preparing us for the personality changes from the tumour and meds. As well as not preparing us for all the other symptoms. Who knew a brain tumour can completely eradicate your entire mobility!? Nobody told us that!!
By the time I clicked on that something was happening, I started to raise it with the doctors.
One doctor, she tripled his steroid medication, then smiled and gently tapped his shoulder and said, “you have a tumour, it’s okay to be irritable” and even implied it in a judgemental way that I was being the unreasonable and selfish one making a fuss.
Irritable is when you misplace your car keys. It’s not having a full blown meltdown and being called every name under the sun, over the most minor of things. I wish I took her name, I would have sued the b**ch.
Even now, when I ask the palliative team questions, I get told I’m jumping way ahead of myself. No, I will continue to ask questions, I would prefer to be the belligerent one, its better that, than potentially witness a horrible way to go.
Thank you for this. To be fair, with both my parents, they were unconscious all throughout for around 48 hours, and the death rattle was only the last 4 hours for my Mum, and with my Dad it was the last 1 hour, more subtle - to the untrained ear, it would have been seen as normal snoring, only that slight tell tale rattle.
But again, the NHS never told us this. I only found out from Reddit and Hospice Nurse Julie (on YouTube), and she only showed 10 second snippets, I guess there are strict laws on YouTube. It still didn’t even come close to preparing us!
The last breath for both were quiet, subtle, and gentle, I guess that’s means they went peaceful?
