Brain tumours

For people affected by brain tumours or brain cancer to get together, ask questions, share experiences and support each other

At a loss what to do

Kimawe
Posted by

My Step Mum(71) of 40 years was diagnosed May 2016 with a glioblastoma grade 4 frontal lobe. She was given the sad news that she had between 4 & 14 months by her consultant. As you can imagine my Dad (82) and the whole family were absolutely devastated.

She underwent 6 weeks of radio therapy in September 2016 and all seemed to be OK for a while, she then had a nasty fall at home after blacking out from what we now know was a absent seizure and was in hospital for sometime. She had also developed diabetes brought on by the steroids, high blood pressure etc etc 

To cut a long story short, she is now in a nursing home, totally bed bound, as she is unable to walk at all, she is fully incontinent, her eye sight is blurry (she's had new glasses since she's been in the home) her speech is really slurry and she sleeps most of the time & sometimes we are unable to wake her, they are coma like sleeps.

My Dad virtually spends 24 hours a day at her beside (the nursing home aloud us to take his reclining armchair to her room & he sleeps in that) and for obvious reasons does not want to leave her, should the worse happen and he's not there.

As a family we are supporting them both as much as humanly possible and have done from day one, but we are at a loss as to what the future holds. She takes 10 tablets in the morning & another 3 at tea time & 4 in the evening & is becoming increasingly difficult about taking her medication, sometimes spiting them into a tissue, she has also started being very rude to the nurses, which my Dad feels totally embarrassed about. We know that if she is unable to take her medication they will give it to her by a syringe driver, but how long can this go on.

We love her dearly but it seems to the family (not my Dad of course) that this is surely a very cruel existence for her. WHY are the nurses still giving her steroids etc, who says when its time to stop ? We did speak with the nurse about palliative care, but apparently she's not ill enough yet - REALLY 

We feel so deflated, she was under the care of her consultant and now she's in the nursing home your just left to get on with it. Not even her own Doctor has been to see her. 

Any advice would be much appreciated

Kim

Yeo
Posted by

Hi Kim

I cant offer any help or advise but I can totally relate to your post.


my mum has stage 3 vulva cancer, she had radiotherapy in October 16 and we had the devastating news that she was terminal with a further cancer growing which is wrapped around a main artery which they cannot operate on, they have sent her home with no further admission to the hospital and no further blood test.  she is 68 and my dad (70) is caring for a her at home we have now a local pallative care team that have visited twice in 4 weeks and the doctor who has only in the last 2 weeks say she will do a weekly visit.   it seems like they have sent her home to spend her last weeks/months and are not really caring but just following tick lists. 


I personally feel let down and think there should be more for relatives, patients and carers.  I believe there is a shortage of funds and personnel but when its you and your family you want to be able to do the best by them and feel supported.


i hope things get better for you, this website has been the best source of information and support for me personally.  The nurses online direct are also very good.


x

trudyk
Posted by

I'm so sorry to read this, can I suggest you contact your local hospice, from my experience few nursing homes have experience of good palliative care. Ours were an amazing support for all of us, like you we found that once there was a terminal diagnosis, it became hard to get anyone to help. The end stage of a brain tumour is very hard, you need expert advice and support but prepared to shout for it. It can be better than you are experiencing at the moment and you have to be prepared to go out and find it, it won't come to you (which isn't right I know).

Some of the symptoms you're experiencing can be caused by the steroids and they should be reduced.  My dads end stage was dignified and managed, thanks to our hospice, it frustrates me still that it took so much effort to get that for it, it is possible though. 
Puddles
Posted by

I'd like to echo what Trudy said. Your local hospice is a good source of help, as is your Macmillan nurse. If you don't know who the community Macmillan nurse is, talk to her doctors surgery. 

My dad was in hospital for 5 days before I realised I hadn't seen the Macmillan nurse, and it was only at desperation point that I thought of it. The second she was on the scene, everything changed. 


One thing I've realised throughout our experience, was that GBM sufferers get treated like cantankerous owd biddies with dementia, when we know that not 12 months ago they were a different person and it's all happened too quick to keep up with. 


I truly hope you find the help you need. 


Much love

Marie

Kimawe
Posted by

Thank you for all your advice.

I have to say the Nursing Home & nurses have & are being great, they even feed my Dad & make sure he's ok.


Unfortunately the local hospice to us has no space ATM We did deal with a Macmillan nurse when she was in hospital but I think my Mum is out of here area now.


I will get on the case Monday & call Macmillan to see what they can do.


Thanks again 

Kim x

trudyk
Posted by

Good luck Kim.  Even if the hospice can't take your mum  they can help you and your dad with support and also in advising in palliative care at the nursing home. Brain tumours need very specialised care and management in my experience. You sound like an amazing family, make sure you get the right support for you xxx

Littleminica
Posted by

I'm so sorry you have to go through this, I understand how hard it is and how helpless and overwhelmed you feel. My husband was just diagnosed and has had two surgeries in two weeks. It's been a month since diagnoses and he's in a short term rehab now, assisted living is what we call it in the states. He's getting occupational, rehabilitative and speech therapy. He should start his chemo and radiation therapy in the next week or two. They won't transport her m because he's mobile and still very physical strong so I have to drive this very confused sometimes difficult person to and from Dr appointments and radiation treatments. It seems so unfair, I often feel the system is failing me, the Drs come in and dump all this information on you and leave. I routinely meltdown on the powers that be, (Drs and administrative folk) I scream and cry and let them know how unfair the system is and it slows them and makes them pay attention and listen to me and gets my husband the support and resources he needs. They told me he has 14 mths to 2 years, could be sooner they just can't say and can't say what his last days may be like, they said every patient is different. I have found strength and support through this community. I'm praying everyday for all of us and our loved ones afflicted with this horrible disease. I pray for your strength and that you have peace of heart through this ordeal.

kaznsas
Posted by

My heart goes out to all you ladies . My wonderful mum was diagnosed with stage 3 vulval cancer in jan 2016. In remission June 2016. Cancer back in oct 2016. We were devastated . Oncologist told us to go home and keep comfortable. Nothing else they could do. My beautiful mum passed away on 11/02/17. I do not think there is enough research in to Vulva cancer. They say it's very rare and I feel they don't know enough about it. Yet in America in some states ladies go for yearly checks. My mum was misdiagnosed for 16 months with abscesses. It turned out to be a 13cm vulva tumour. I feel if more research was done then more lives can be saved. I feel sorry for every lady that suffers from this dreadful disease. Alli can say is keep strong. Be brave and keep fighting. I feel for you all. Xxxx