Brain tumour in elderly parent

[DepartmentOfCountingTheMoon]

My mother is late 70s and has just been diagnosed with a large brain tumour in her cerebellum and temporal lobe. She's been having vision and hearing problems on her right side for the last few weeks as well as headaches and nausea. She'd need to have a biopsy to tell whether it's malignant or not but, so far, she's decided not to have that. Treatment has been steroids to reduce the swelling which are having a positive effect for now but nothing else. The hospital, with her agreement, is taking a wait-and-see approach.

She seems unconcerned. I don't know if that's because she doesn't understand the implications, or she does understand but sees it as not worth fighting, or if she's putting a brave face on. She had a serious stroke a few years back that has left her in a wheelchair and unable to do most things by herself so she's very dependent on carers. I know she's deeply unhappy about that. She's also said in the past that if push comes to shove and it looks like she's going to be worse off that she doesn't want resuscitation but I know I need to have the conversation with her again to be clear about her wishes.

I don't really know what I want from posting this. I'm trying not to dwell too much on the what-ifs but she's my mum, I love her to bits, so selfishly I don't want her to give up. On the other I do wonder what I'd do if I were in her position. How do I even broach the conversation of "I want to make sure you know this is probably going to kill you" or should I just leave her to it?

I'm so sorry you and your Mum are in this horrible situation. It wold be good to check she's understood the consequences of no treatment, I agree.

Maybe you could ask her if she's clear on what's been explained to her by the doctors, and what they've said about the consequences of doing nothing. They may not have said anything about those consequences, but that would open up the conversation between the 2 of you. Posing the question including the doctors initially might be an easier opening to the discussion if that makes sense.

for you and your Mum.

Thank you. That seems a good approach. I think I need to get a better idea myself about what the consequences are so I'll try to get in touch with the oncology department that is leading her treatment.

I’m really sorry @DepartmentOfCountingTheMoon.
i had surgery for a brain tumour a few years ago , it’s really tough surgery. Although I think mine was made worse, as I did go into various aggressive cancer treatments a few weeks after the surgery . I’m in my 40s and otherwise fit and healthy and I have been left with various health problems .
Maybe get her permission to chat through it with her dr and ask about the likely outcome of surgery or if she’s fit enough for it. One of the risks of the surgery is a stroke so I image she would be at even higher risk if she’s had one before.

So sorry you are in this position OP. If I was late 70’s, in a wheel chair and unable to do much for myself I wouldn’t be having treatment either…
My mother was late 50’s, severe headaches for 10 days or so, we paid for an MRI as the NHS wait was weeks. They gave steroids and operated the next day, the OP was about 7hrs, skull opened ear to ear. The first few days after were in high dependency hospital ward. And she seemed better, headaches eased, vision improved but then about 3 weeks after the Op the symptoms returned and another scan showed it had regrown to the same size in that short time. They tried palliative radiotherapy but she couldn’t tolerate it. She died about a month after the OP. It’s a big regret of mine that they put her through it, although I suppose they thought there was hope. The biopsy after the OP showed the tumour wasn’t cancerous, just very aggressive and fast growing.
I’d suggest at your mums age, she knows her own mind. Best wishes.

I'm sorry to hear you've been through this personally but it is really helpful to hear from someone who's had to make the choice. How are you doing now?

I have to accept that my mum's general health probably isn't good enough for such major surgery. I think this is probably why the hospital is ok with waiting and seeing, at least while the steroids are still working.

I'm very sorry for your loss and I truly appreciate you sharing your story

Deep down I do suspect that letting her fade away as comfortably as possible might be the kindest option but then I get a massive surge of guilt and feeling like I'm being a horrible, selfish brat to think like that. But at the same time I don't think I could push her to have aggressive treatment and surgery because I really don't think that would make things better for her.

The speed with which this could progress is terrifying. The tumour can't have been there when DM had her stroke a few years ago as surely it would've been spotted on the MRIs she had back then. She's only had hearing and vision problems over the last few weeks. Or, at least, that's what she's told me.

I've got a brother who lives thousands of miles away. I know he'd jump on a plane at the drop of a hat if I said I think he should. I don't want to drag him over unnecessarily but equally I'd hate tell him too late and she passes before he gets to see her. I've been keeping him updated with what's going on but I think I need to start being more honest and less upbeat and positive with him.

To me, quality of life is everything - I would personally rather have a short death than a long demise, but not everyone thinks like that! Don’t feel guilty, your mums very lucky to have your support, and its not an easy job!

There seem to be many different brain “lumps” with wildly different outcomes. Our friends 30 something son has lived with one for over 10yrs now, with little inconvenience, and then there’s the ones like my mothers that grow seeming overnight. I’d think you are right that it can’t have been there when she had her stroke or they’d have seen it. I saw my mother’s scans and it was obvious even to some one that didn’t know what they were looking at! They were never quite sure exactly what my mother’s was, and I do wonder if that was partly behind the keenness to remove it and have a good look at it under the microscope! It didn’t help her, but hopefully increased their knowledge for the next time.

If I was your brother, I think I’d rather visit sooner than later even if (hopefully!) it turns out to be unnecessary. X

I got a call from the hospital just after my last post here. A neuro-oncology specialist had reviewed the MRI and decided it's almost certainly cancer but whatever it is, it's untreatable. They've given her three months to live. I went to see her in the hospital right after the call and have spent the rest of the time phoning family. DB is getting on a flight over here any minute now.

It hasn't really sunk in. I feel like I should be doing a thousand things but I'm just sitting here staring at the wall. I live 60 miles away and I've got absolutely no idea how I'm going to balance making sure she gets the care and attention she needs while keeping my job and sanity.

Sorry to read your update OP. I hope you get to have some good days amongst the next few weeks. Wishing you strength. X

I’m so sorry for what you’re going through. Are you able to take some time off work? I’ve had 2 elderly relatives with brain tumour, one at 77 and one 89. The 77 year old was given option of surgery but this ended up being a mistake and she never woke up, she could have had some extra weeks but she did pass peacefully. The other was untreatable and was advised she could have a few months left so started looking at care homes for palliative. Never ended up leaving hospital. She ended up very confused trying to climb out the window at one point, then stopped recognising us, then stopped speaking, eating and drinking and went to sleep and never woke up, this was only 2 weeks after diagnosis.

From a practical standpoint make sure she has any affairs like POA, will etc done. I work with a lot of elderly and they often can’t find peace if there is still things to figure out.

So sorry OP.

@lisaloo88 it's the uncertainty that's making this even harder. If you talked to her today you'd not know there was anything wrong. I know that could change really quickly but equally she might carry on for ages. We just don't know.

She's due to be discharged soon and go back to her assisted living flat where she lives on her own. I'm starting to think about asking my manager if I could WFH and just move in with DM so she's not by herself. But as much as I love her I'm not sure our relationship would necessarily survive that much proximity for an extended time. DB's here now which is lovely but he's got his own life thousands of miles away so he can't stay here indefinitely.

I have been in a similar situation and my parent didn’t really want to know what was happening and in fact opted to leave the room while the prognosis was given to their child. I think at that stage of their lives older people want to be let go quietly and not have to face the brutal reality. I think you need to look at carer support because it will get to a point, possibly sooner rather than later, when you will not be able to manage on your own. Maybe her GP would be able to advise on services that you can access. Your mum will also
be vulnerable to infection which could cause a rapid decline. I’m sorry this is happening to you and your family

I'm so sorry you have received this news. Been there and it's not easy, but stressful as managing my parents care was, I was ultimately very glad looking back, that I was able to support them and spend times with them.

Do you have power of attorney set up for her for property and finance. That's a priority as it will allow you to pay her bills if she needs you to.

Can your mum afford a daily care visit, so that someone is seeing her each day,even if just for a cup of tea, and reassurance for you that she's not on her own. Then she also knows that career if her needs change and she needs more support?

Has she got a key safe on the outside of her front door. They are cheap, easy to fit and needed if health visitors or carers attend.

Have several copies of a list printed out and kept somewhere obvious (by her medication?) that can be given to medics: date of birth, full name, GPs name and address, allergies, current meds, brief medical history, next of kin name, your phone number . . . Each time we had an ambulance or crisis the career or I were asked these questions and could just hand it over.

If she's reasonably well in herself now, you could just stop for this weekend, but prepare the way to go and stay, as things chance.

Sending very best wishes

I actually think the surgery and not waking up was preferable, even if she could.have had some good weeks.

When my toddler had brain tumour surgery, it was 50-50 whether it was low grade or high grade. If high grade there was no cure. I prayed so hard that if it was high grade that she wouldn't make it through surgery, because it would have been such a hard road for her, with no hope of a cure. Much better for your relative to die, believing there was hope, and painlessly, as not all BT patients just slip onto sleep.

As it was, it was low grade, she's still here 5 years later and doing well. But it's been a long road and is still recovering - almost 2 months in hospital because of complications. It's such massive surgery that quality of life needs to be weighed up when someone is elderly and it's an aggressive tumour.

OP, I'm really sorry about your mum. There's no more to say really is there. It's shit and I'm sorry.

If you can have paid sick leave, or can manage to meet your bills on SSP, talk to your GP, who will probably offer you a sick (fit) note, at least as your DM's condition deteriorates. You should also keep your manager and HR dept up-to-date.
Best wishes to you all.

Thank you all. We've had a lot of conversations and I'm sure she understands the situation. She's hoping that it progresses very slowly and is being quite positive.

She'll hopefully be going back to her assisted living flat in the next couple of days. There are carers there 24/7 who help her to get up, dressed, washed and fed as well as being on-call as needed. A nurse will visit every week to check how she's doing and regular MRIs to see how fast the tumour is growing.

@Justmadesourkraut thank you for the ideas. We've got a few of those things set up already but I'll make sure there's a list of medications and the other things. I've got a meeting with my manager later this week to talk about the options there. My manager is very supportive but I know there are limits to how flexible they can be and unfortunately I need my job. I'm going to visit twice a week for now which I can do without affecting work. If and when things get worse then I'll need to think again.

Thanks again everyone