Dementia and brain tumour

[Fattuatara]

Hi all - I'm looking for some advice but not sure this is the right place to ask.

My mum has vascular dementia (I think). She was diagnosed 2.5 yrs ago as having vd. But last week I was told that she has an aggressive, untreatable brain tumour. Three of the consultants have said she doesn't have dementia, 2 others have said she probably does. Regardless I guess, she is demonstrating some of the behaviours of dementia, and is very confused most of the time. I really don't know what to tell her. Should I tell her she has an untreatable brain tumour? Im really worried it will just frighten her, and I'm not sure she would understand anyway or remember if I did tell her. But I feel like it would be deceiving her not to tell her...

Has anyone else been in this position and can anyone offer any advice?

Rachel

 

[jenniferpa]

Oh my goodness, what an awful situation to be in.

I think you have to judge how she would take it in the moment you tell her (I understand that she might not remember after you tell her). Would it in some way make her feel better (as in, I'm sick and people get sick) or would it make her feel incredibly distressed? You would essentially be telling her she is going to die and I'm not sure that would be such a good idea (having said that, I would want to be told I think).

It would be of course different if she had the tumour but it wasn't currently impacting her capacity and understanding but it rather sounds as if it is.

On the more practical level, it sounds as if she should be eligible for fast track NHSCHC care since this sounds as if it is a terminal condition plus hospice care (in home if preferable). So you should probably look into that.

 

[Fattuatara]

Oh my goodness, what an awful situation to be in.

I think you have to judge how she would take it in the moment you tell her (I understand that she might not remember after you tell her). Would it in some way make her feel better (as in, I'm sick and people get sick) or would it make her feel incredibly distressed? You would essentially be telling her she is going to die and I'm not sure that would be such a good idea (having said that, I would want to be told I think).

It would be of course different if she had the tumour but it wasn't currently impacting her capacity and understanding but it rather sounds as if it is.

On the more practical level, it sounds as if she should be eligible for fast track NHSCHC care since this sounds as if it is a terminal condition plus hospice care (in home if preferable). So you should probably look into that.

Thanks Jennifer. Yes the hospital have said they will apply for fast track CHC for us - and I have posted separately about that. (I'm not sure whether we will get a choice re the nursing home she goes into and am anxious she doesn't go into the three that I have looked at that are council funded as they were awful and not very close to us. There are closer, better, privately run places but mum has no assets or savings...)

But on the first issue, the Drs have given her steroids to reduce the pressure in her brain so she's now back to how she was 2-3 weeks ago (ie walking and able to get words out although still very confused). She knows she's sick (because she's in the hospital) and she said yesterday she doesn't feel herself (a rare lucid moment) But there have been a few times when she has looked at me like she's asking me what's going on, but hasn't been able to get the words out. I've told her she has swelling in her brain but not that she has a tumour and won't be having any treatment. Although she appears confused most of the time, I don't know how much she understands about what's happening around her or to her.

 

[Fattuatara]

I'm so sorry to hear this. I think that if it were me, I'd just leave it at what you've told her already. I would suspect that it would distress and frighten her to know the truth. If there were anything to be gained by telling her the truth, if she were to have treatment, for example, then maybe. If this tumour is very aggressive, then she probably doesn't have long, (sorry! ) so I'd just let it take it's course. By the time she becomes very ill with it, then she won't be capable of understanding what is wrong with her anyway. The nursing home or hospice will keep her as pain-free as possible, and she will just slip away.

Wishing you strength for the difficult days ahead. x

Thank you! X