Palliative care - brain tumour

[Guineapiggiesmalls]

My mum was diagnosed with a form of lung cancer (stage 4a) in 2022, which was luckily able to be maintained with a daily pill. At the beginning of October this year we thought she was having a stroke but it transpired to be either brain metastases or a second primary brain cancer, thought to be a high grade glioma. Because of the effects of the daily lung cancer medication, she can’t tolerate the surgery for a biopsy so has come home for palliative care.

She’s very philosophical about it all, but the toll of being a full-time carer is starting to hit me. She’s been at home for five weeks now, and I’m scared of how long this could potentially continue. Obviously I love my mum, and am keen to respect her wishes of dying at home, but we’re getting little support from the council.

I wonder if anyone has any experience of palliative care at home? My mum is now not receiving any treatment for either of the cancers and is only on steroids to manage the symptoms. Our oncologist suggested around 2.5 months but honestly she seems like she’s soldiering on much as she was when she first started showing symptoms, and I’m not sure if we need to start making alternative plans before I totally burn out as a carer.

Macmillan is the first port of call

You mentioned she would like to be at home, but a hospice would be a better place for both of you: in terms of the care she can receive and you being available to support her. Palliative care at home will likely be disruptive such as a downstairs hospital bed, pumps, drips and other paraphernalia. Not sure if you have children at home but this can be overwhelming whether you are 5 or 50.
Sending you support

I'm so sorry you are going through this.

Hospice beds these days tend to be only for people whose symptoms are not under control. If the hospice stabilises the symptoms, most often discharge would be to a nursing home.

I think in your case I would Google the Comminity Palliative Care Team for the area and get advice. Tbh she should be known to them anyway. Tell them you are burning out abd struggling. They may be able to help your Mum get more care, whether that's in a nursing home or not.

Definitely contact MacMillan or your local hospice. I work with a charity for children with life limiting diagnoses and in my experience (appreciate it may be different for adults) but generally the hospice will work with you and will try and accommodate palliative care at home as far as is possible and make a recommendation for care in the hospice if this just isn't feasible. You should absolutely be able to access support from them if she does stay at home.
Again I know my experience is different so I'm sorry if this hasn't been helpful. I'm sorry you and your mum are going through this.

in our area hospice was only for finals days/month. Until then there were visiting carers and day centres. Oh and volunteer visitors.

Some of it requires you to pay, some doesn’t.

Thanks for the responses.

I think our local hospice is, as others have said, really for the last few weeks/days. We’ve already got some things sorted, such as ‘just in case’ meds, and a riser chair so she can get up easier (as she was unable to get up from her own chair anymore).

I suppose I’m wondering how bad things will get. I was with my dad when he died (in hospital) and although it was obviously upsetting, he really just slipped into unconsciousness and died within a few days. I’m worried that death from brain tumour/lung cancer will be a lot more traumatic and painful for my mum.

Hi guineapigsmalls. I hope you are OK. I helped my friend who cared for her mum at home up until she died. She had lung cancer and it moved to her brain.
Her mum so wanted to die at home but it was tough. Really tough.

We were promised all kinds of support but in reality, it never appeared.
We had a nurse for the last 18 hours but she popped in and out, mainly dealing with meds. Up to that point it was us 2 for about 3 weeks at home doing all personal care and helping with pain and seizures. We tried to do shifts but often both of us were needed. There was mo respite or carers.

It was a really tough time. I'm glad my friends mother got her wishes but it had an impact on her daughter to this day.

My dad died from brain tumour. It depends massively where it is. It may impact communication but not mobility, or mobility but not communication… so my experience may not match yours.

However- we were massively relieved at the point dad made it into the hospice. The care he’d received at home wasn’t adequate (mainly due to my stroppy mother), and he improved dramatically for having moved. They were always on time with his meds and he was just generally better attended to.

He laste much longer than I expected at every stage. I was madly googling symptoms, trying to work out where we were up to, to prepare myself for what was happening. He hung in there a long time, despite showing signs of decline. It was upsetting, there’s no denying it.

The last days were ok.

I’d say, prepare for a marathon not a sprint, but be aware things can change quickly. I would prepare for additional care, knowing you may not need it for long, so that you have energy to face everything that comes next.

Speak to your GP and through them to social services. You should be able to get help with carers. Are you claiming attendance allowance ?

Tbh I would start talking to the hospice now, if youre not getting any helpful response from the community palliative care team. Carer breakdown is one of the reasons people sometimes get a bed. It will be easier generally if they know about you now. If they don't think they're the right service, they should at least know who else to talk to.

My cousin died at home with a brain tumour. It's one of the reasons I've said I don't want to die at home unless there's no other option.

Thanks for your honesty here. I know it’s a sensitive question, but can I ask how long it was? I’m finding myself googling constantly, and I know every patient difficult, but the ‘marathon’ is what I’m frightened of given my mum is refusing hospice/home and frankly isn’t displaying enough symptoms to qualify for hospice (yet).

We’ve spoken to GP but, other then dropping off just in case meds, and coming in once, they haven’t done much else. We applied for attendance allowance at beginning of December, but it can take 12 weeks apparently.

My beloved mum died in June last year, six weeks after being diagnosed with a primary glioblastoma, that was the first anyone knew she had a brain tumour, by the time it was discovered, it was 7cm and untreatable.
Mum came home for palliative care, I moved in to support mum and dad.
We were lucky to have had excellent hospice at home care from our local hospice on hand to phone any time of the day or night, district nurses in every day for meds, carers in 4 times a day to help with personal care, Marie Curie overnight on a few occasions to stay awake so we could sleep. Mum was on steroids, they helped stabilise her.
Back in a bit, just need to sort something out...

It sounds as if the only reason she is coping without professional 24 hour care is you. Therefore if you are struggling, effectively so is she.

My dad was given 9 months but until 3 months before you wouldn’t have known anything was wrong; I’d say at about 3 months we realised we couldn’t go out alone as he was slightly confused about the layout of our town (despite living there for 30 years) and then slowly became confused about the layout in our house and time of day and night. He spent the last month in a hospice as at home we couldn’t manage his pain and then his mobility so it was really the best place for him and for us to to spend those last weeks. We got him a place at a hospice because we took him to a&e in so much pain and they assessed we couldn’t manage his pain at home. Hope that helps.

Definitely call McMillan. My husband had oesophageal cancer that spread to his brain. He lived for a month after the spread to his brain. I genuinely don't know how we would have coped without the support from McMillan. He wanted to die at home and they offered overnight care, they arranged for the pain consultant to come to the house and supported the whole family.
We filled out a form stating that the illness was terminal- I think it was called DS1500 and our benefit claim was fast tracked. I'm not sure if it's still the case but I would definitely inquire- our claim was approved within 2 weeks

I know it's horrible but I did complete a DNR after discussion with my GP and family. The thought of resuscitation was horrendous even though I felt like I was signing a death warrant

I'm very sorry for your family and wish you all the best - and please try to make time for yourself

@Guineapiggiesmalls the key to unlocking all the help we received was the District nursing team. The lead nurse organised everything from a hospital bed, the carers, the hospice team, carer's allowance and got mum on the priority list for Marie Curie (this was an absolute godsend so we could sleep and not worry, at least one night or so a week.) Macmillan were helpful but we didn't need them as the nursing team were so efficient and effective at putting in place the maximum package for end of life care.
Looking back, we just buckled up and held on tight. The support we had was excellent, but nothing could've prepared us for seeing our beloved mum deteriorate so quickly.
The last two days were very, very tough, and whilst we don't think mum was in pain (she had a syringe drive dosing meds at that stage), it was really distressing seeing and hearing her. However, on reflection, we wouldn't have done anything differently. She wanted to be at home and it was the best place for her, and for us.
Wishing you well, I hope you can get the support you need x

I am so sorry to hear this. I would contact your local hospice, while they do have facilities for people to die with them, they also have lots of other support. Advice about pain management, day care facilities etc.

She needs a referral to your local community specialist palliative care team. These are now much less often called Macmillan although the name persists. Macmillan as a charity has now largely moved out of palliative care.

Going forwards, they would be responsible for managing the dose of steroids which is likely to need changing as she changes.

Depending how complex things are, they may be heavily involved or leave most things to the District Nurses but you and she do need to have met them.

Firstly I'm sorry, such a tough situation.

As far as time, likely progression etc. it really varies so much but my friend who recently died of a brain tumour was approximately 3 months from hospitalisation due to stroke symptoms (he already knew he had an inoperable tumour) to dying if that helps a little, similar to your oncologist estimate. Your gp can help to arrange respite if you need it, they tend to use nursing homes these days

My mum had a consultant palliative care nurse and the hospice at home team. They were able to offer equipment such as hospital bed and increase the amount of care as the need increased. I think they were involved for about 3 months so not just the last few days/months. Mum was very worried about being in pain but it was well managed and the support and care available meant my dad had to do very little personal care. We were all worried about how it would go but it was well managed at every step, I hope it can be the same for you. Unfortunately it might be one of these post code lottery things.

Lost DSis to a brain tumour a few years ago. Our MacMillan nurse was wonderful. She organised support for the teenage children, and also a Marie Curie nurse to do two overnights a week (DSis had no concept of time and would often be up all night). We did have home carers drop in for 15 minutes at a time but they came at times that were no use (ie breakfast at 7.30 then back to do lunch at 10 then dinner at 7.30).

I was the main carer. I found the move to palliative care quite difficult - in many ways it was as if everyone had just dropped you having become used to a whole team of people turn to. Medical issues had to go to the GP who had little knowledge, experience or time for brain tumours.

Due to several falls and her home being deemed inappropriate she was then moved to a care home - which was horrible. She was in her 40s.

The hospice would only take on patients with two weeks to live. DSis did get in to a hospice on discharge from hospital following sepsis. I was told she wasn't dying quickly enough to merit a place (yes really!) so she was moved back to the care home.

I don't think anyone can give you an idea of prognosis. I think my sister had about 8 months following the move to palliative care. However, for much of that time she was quite well - we had fun days out and some weekends away.

This is basically why you need the Community Specialist Palliative Care team involved - they do know about brain tumours, they do know who to call and when, they are the people who are still there when everyone else has moved on to people who aren't 'just palliative'.

Contact your mums GP surgery and ask to speak to the District Nurses- they can coordinate support for you and also equipment and assessments etc.

OP you need to find out who has the primary responsibility for a palliative care patient in your area. Here there's a palliative care team which works in the community, but is based in the local hospice. We were referred by the GP. After DH was referred he was allocated a specialist nurse who coordinated absolutely everything, including services and equipment I didn't know existed. In your area it may be someone else who does this, but you'll save yourself a lot of energy and anguish in the long ring if you can find them.

It was 16 months, but he had been otherwise very healthy. He had brain surgery which helped initially. He had several rounds of chemo and radiotherapy. it was all made harder by Mum’s refusal to accept the situation. So it’s all rather different from your mum’s position.

The steroids gave him an awesome appetite, which frankly gave him a love of life it was good to see! He’d get excited at the site of the tea trolley, cake trolley, sandwiches…

The sad detail-

He dipped a couple of times where we thought he’d go, then rallied. He finally lost mobility, then became steadily less conscious. The active dying part was perhaps 5 days. He was only intermittently conscious, he didn’t leave his bed, we moistened his mouth, he had a morphine driver.