Brain tumour. Is mum close to the end what happens with her care now?

[BeMintFatball]

Sorry for long title. I can’t see a clear pathway and so many unknowns.

Mum is 88 will be 89 in November. Last 2 years she has had major medical events all different all potentially life ending but she has battled through. It all started with a stroke that affected her right side.

Rapid decline over last 6 months and feels like the pace of decline is speeding up.

DH popped in on her 10 days ago and was lucky to witness the first seizures which he recorded. We had a FaceTime chat and decided to get her by car to our nearest hospital. This is an important point because had she called an ambulance she would have been taken to a hell hole of an A&E dept at hospital a few miles away in the opposite direction from us.

We are 99% certain the diagnosis is brain tumour. Mum has been put on anticonvulsant and a steroid to take the swelling down. We have told a oncologist and neurologist will be reviewing test results next week.

Her blood thinner has been replaced by aspirin. Does this mean surgery is a possibility?

She looks far more unwell than she did when first admitted.

If she is an unsafe discharge, where will she go? In recent weeks I been researching care homes near me but they have waiting lists. Are there emergency placements available? Or is this how bed blocking happens?

Hate not having a plan.

can anyone suggest what might happen next?

A surgery for a brain tumour? I had a friend who died mid 40s with a brain tumour. She had 2 surgeries to remove what they could before she died. In the first they woke her up mid surgery so they could keep removing tumour while checking they weren’t impacting her use of her arms and legs and her speech. The recovery was brutal, she still needed radiotherapy and then after three years of the battle - much of it not with good life quality - she died. I am sorry to say I am not sure it’s in her best interests to go through that at 88 when she is not in good health anyway.

Re her care: you need to know the medical outlook first. Once there is no medical reason for her to be in hospital you (and social services can do a care needs assessment) can assess if she can live independently or need a care home or even a hospice if she is near the end. While you are waiting for medical news be sure to get POA done if you don’t already have that in place.

At her age it’s probably a case of make her as comfortable as possible. I’m sorry you’re going through this. I recently had a friend die from a brain tumour also, although she has absolutely no symptoms other than her face drooped on one side and they thought she may have had a stroke, MRI showed a very large brain tumour. She was told 3 months without surgery, a bit longer with surgery although she would likely be limited afterwards. She decided to go without and within 3 months she was gone. Incredibly incredibly sad but she was comfortable so that’s the main thing for her.

They will discuss the scan findings at an MDT next week. There's lots to consider. Major surgery under GA is alot for a nearly 89 yr old. Would she come round from the surgery, what would the immediate post op recovery be like for her, what's her quality of life likely to be, after all of the op and recovery, what is life expectancy, would she cope or even be well enough for post op chemo and or radiotherapy if needed. Write down your questions and don't be afraid to ask them no matter how small you think they are they are relevant to you.

@Choux thank you for reply. POA is already in place for both finance and money.

She has already lost the use of her right arm and leg. She is very uncomfortable. Prescribed water tablets and now can not urinate without great difficulty. She’s deaf and sight impaired.

Hospital have ruled out infection and further stroke , hence moved her from stroke ward to medical ward.

I have serious misgivings that surgery is in her best interests but she thinks she will be seen by a neurosurgeon. Ward nurse said she has never seen a neurosurgeon on the ward . Communication is relayed through other doctors.

I wonder if Mum can or should refuse surgery if it’s offered. I had the DNR discussion with her long ago and she understands that is a bad idea.

@Fulloflemonstoday my gut feeling is we are talking a matter of months.

@Mumof1andacat good advice. A MDT team is on the cards for next week. Our hospital are in talks with the neuro team at the other hospital. The other hospital is a neuro specialist hospital but mum couldn’t get past their A&E dept. Over the last year she was sent many times there just to lie on a trolley in a corridor for 36 before being sent home.

From your update I would not expect drs to offer surgery. Lost limb usage won’t come back after surgery as the brain cells controlling that movement have already died. An 88 year old on blood thinners, aspirin with a previous stroke is not a good candidate for major surgery. Drs didn’t want to do a hernia op on my dad when he was 81 and on blood thinners with heart failure and a pacemaker. Brain surgery is obviously a bigger op than a hernia.

Why is she on water tablets? My dad was on furosemide (a water tablet) to help his heart failure. Does she have heart failure? If she seems more unwell now than when she did 10 days ago that is also a sign that she would not cope well with the surgery.

I think you just have to wait to see what drs say the diagnosis is and if there is any treatment they consider worth doing and then see if your DM wants that treatment. I think your role is to work with drs to ensure she understands what that treatment can and cannot achieve ie it won’t turn the clock back two years on her health.

Sorry you are going through this. 💐

@Choux water tablets for heart failure it causes fluid to build up in her right leg. Abnormal ECG trace on admission to hospital. She’s been on water tablets since last May when her gp thought the leg swelling was a DVT ( it wasn’t) but this was the start in mobility decline

My df has a brain tumour which they managed with radio therapy, immunotherapy and more recently a different type of Zapping it but similar to radiotherapy (it was in February and I’ve struggled to keep up with the names as dm also had cancer at the same time). The final option if it grows again is surgery but it’s another step before that As surgery is very risky. I’m aware that depends on where in the brain it is. His is also slow growing but grew faster than expected post radiation. the immunotherapy is part of a clinical research program and seems to be working. He’s early 70s so I wonder if in his 80s it would be more about comfort as it’s been quite tough. The steroids have particularly affected him.

My mother had several small strokes and then a bigger one. She had signed a DNR and refused to go back to hospital. My daughter and I nursed her at home for the last week with the help of carers, district nurses and palliative care team from local hospice. It was the best decision we ever made. I honestly believe that there comes a time when we have to be prepared to let people go,

@TeenLifeMum can I ask how are the steroids affecting your Dad? A friend said her face was very moon shape whilst she was going through the loading doses.

I am anticipating a lot of irritability and anger especially as she is also now on Keppra for the seizures. I am epileptic and am quite knowledgeable about about AEDs , Keppra anger is a known side affect

He’s put on weight (but actually looked frail before so looks better fuller iyswim). The worst side effect was terrible sleep. I’m unclear which part of treatment affected his eyes but they’re cloudy. It can be fixed with laser treatment but waiting list is long and he’s essentially blind which means he’s not able to be independent and doesn’t go walking line he used to. He used to spend weekends wild camping on the moors. … still can’t get a disabled parking badge though.

@TeenLifeMum I’m sorry to hear how treatment has affected your Dad. It’s hard when life becomes smaller and they can’t enjoy what they used to do

@TeenLifeMum is your Dad getting attendance allowance? The form is awful but my cousin completed it on her behalf.

Get help to complete it if you to. Once attendance allowance was granted getting a blue badge was straight forward.

No, they’ve been told he’s not entitled. His cancer is incurable (lung and brain) but not yet end of life.

@TeenLifeMum in your shoes I would challenge that. Your Dad is over state pension age which is one stipulation. If he has needed attendance allowance for six months he can apply he doesn’t need to be terminal if he can show he has had need for 6 months.

My Mum had a diagnosis of brain tumour and decided not to have surgery or therapy. She demanded to have a meeting with the specialist to make her preference known. I was so proud of her. She lived without pain and fairly contentedly for several months and then faded away very quickly after a major seizure. Her care home place was free due to the tumour counting as a medical need (as opposed to 'just' having dementia or whatever). Good luck whatever happens.

Had a chat over the phone with ward junior doctor. They now know the lesion in the brain is a tumour. They also found a lesion on one kidney. Only way of knowing if that is a tumour is to do a biopsy. I can’t see Mum agreeing to that. She has refused brain surgery but doctors were advising against that anyway.

Neurology is being referred to the other hospital. Current hospital urology are dealing with the kidney. Each specialty is having there own team meeting and then they are all going to join up care plan. I think. I still feel in the dark.
It doesn’t feel like decisions are going to happen quickly.

Mum was bright and mood was definitely buoyant. She doesn’t want to live and now thinks the end is on the horizon. As she put it, can’t come quick enough. I’m less sure , I think she could have more time than first thought. She still has a good appetite for
food. Last night’s visit was difficult because I’m pretty sure the woman in the next bed was in the throes of death rattle, the curtains were round her. Mums bed very depressing. Other people’s curtains block out the view of the window, there is a wall in front of her and it’s dark in the bay.

UPDATE oncology and neurology have reviewed the MRI scan. The tumour is cancerous and fast growing.
Mum’s cognition is in rapid decline. Ward doctor called me in to break the news to Mum that her time is very near. Estimated 2 to 3 months at most.
Mum will never go home, she will go straight to hospice.
Mum was brave and I managed to hold it together .

Not been able to speak to my daughters yet. Voted and headed to the pub where believe me I enjoyed a bloody stiff drink.

I feel heard, the doctor was incredibly kind and understood my main priority is Mums comfort and to go pain free. Relieved that the end will come quick in a rip the bandaid off kind of way, Mum is just existing . Terrified of what symptoms might manifest. Absolutely dreading the months ahead and how this will affect my younger daughter, she has learning disabilities and is barely functioning following a significant mental illness episode she is only just coming out of and this will send her spiralling.

@BeMintFatball I'm sorry to hear this. It sounds like hard news but at least you have clarity and I am glad you feel heard and the focus is on making your mum comfortable.

What emotional support do you have in real life? What practical support?

How old are your children?
You dont have to tell your daughter immediately if it would help you to get your head around it first. But remember that you have been living out all sorts of uncertainty and fear in your head, and you dont need to convey all of that to her. The message may be that their elderly granny is ill (which they now) and now has some further conditions which will hasten the end of her life, and she is going to a hospice where they can take care of her and keep her as comfortable as possible.

Good luck

My mum had a brain tumour at 70 (secondary cancer as she also had a tumour on her lung)
it was a case of treatment to prolong life which mum opted to do so she had chemo and radiotherapy to try to shrink it. A year later she collapsed at home and once in hospital began to decline and we were told the end was near. We were given tge option of at home care or a hospice. We chose the hospice and it was a lovely place. She actually improved a bit when she first got there which the staff said is normal due to the level of care in a hospice. The hospice was only for three weeks though at the end of week 2 they started discussing her coming home for a bit but then she declined rapidly and was no longer able to eat/ talk . She died 2 weeks later. I was so relieved it was at the hospice as they could not have been kinder to her and us. End of life cancer is brutal but they made it as easy as it could be.

So sorry to hear your update. Your head must be all over the place.

I would clarify things with the ward however. Most hospices only have very short stays, up to 2/3 weeks. It is very possible the doctors do not understand this. If prognosis is months your mum would not meet the criteria for a hospice stay. I would ask for the hospital palliative care team to get involved to go through all the options. Sending you strength.

You sound like a very sensible and compassionate daughter. I hope your mother is comfortable at the end of her life.