We Talk Brain Tumours

Naomi, we don't have a dedicated social worker, but social services do call on the phone every so often to see how things are going with the care package.

I think the Mac nurse fulfills the role we'd usually associate with a social worker.

What Ali used to do to get up and down the stairs (when she was stronger) was sit on the step and bump up and down on her backside, which allows for some rest and is easier than walking up and down. At the top, she rolled over onto her hands and knees and stood up with some support.  The good thing is with this technique that coming back downstairs is far easier.  The downside is that a stumble in seating at the top of the stairs could be nasty.

Naomi,

You should definitely get in touch with the Mac nurse and also the District Nurses, they should be able to get your Dad assessed for NHS Continued Health Care if he is in his last stages, this is not means tested and will cover day carers and also night sitters if they are needed.  My Dad has just been fast tracked and it can happen in a few days so that you can get the support you need as quickly as possible.

We are lucky that we already have a stair lift which my Mum needed when she was alive, thank goodness we didn't have it removed!!!

Good luck.

Kerry I hope you get chance to talk with your daughter and sit with G and say all you want to do.  As naomi says the school should be very supportive.

Naomi - you can contact social services yourself and ask to speak to the emergency social worker or ask your mac nurse or the hospice to do it for you.  Once you are in the system the SW can help organise home support and equipment that you may need.  I found having a SW available to contact when I needed her was useful and there is someone there over the weekend if you need them.

Love to all - have a peaceful weekend Joanna xx

Gosh, you people are all so wonderful and helpful on here. I have told mum all of this. I have to be very careful as she is very prickly about needing help and tends to bite my head off. Today she was meant to be going to her sister's golden wedding party and leaving dad with her sister for a couple of hours but she had had such a bad morning with dad (he can't feed himself and now seems to have forgotten how to eat??) that she didn't go. I can see she is at breaking point. He is going in to the Hospice next week for a few days only and I really want her to have a care package in place for when he gets out.

How is this for irony. I took some pictures of him today. He looks the picture of health - he doesn't even look 65, he could pass for a decade younger. When he fell on Thursday and mum had to call the paramedics his heart rate and blood pressure were tip-top. They told mum that a weaker person would have been killed/seriously injured/had a stroke with the amount of falls he's had :/

That was meant to say HIS sister, not her.

I forgot to add - we got dad in his wheelchair for the first time today for a spin in the sunshine. Future paralympians beware!

Kerry - I hope you, your daughter and G are having a peaceful evening. Lots of love.xxxx

Kerry,

Just wish I had the words for you my lovely.  The day of my brain surgery, I was alone and my surgeon came in and sat on my bed (yes I was in bed with my surgeon - well I wanted to make sure he did a good job didn't I ) and he said I have to tell my children that I will die from a brain tumour.  Well my 10 yo daughter would have been in pieces, my 12yo son is very sensitive and I can't imagine what it would have done to him, however after my surgery and results, I told my 14yo........I was washing up with my back to him so he couldn't see me crying and said that I might only have 2.5 to 3 years to live......he replied "oh ok" and that was that!  We have not spoken of it since. 

I  have been breaking it gently and if my kids ask me a question, I don't lie, I just give them the bits of info they need at the time, like when my daughter asked me if I hadn't had surgery would I have died........."yes I would, but it might come back and I will get sick again"....of course she thought they would just remove it again and off we go! 

I feel for you Kerry as I know I will be having this conversation with mine one day, as it stands my daughter is now 13, middle son 15 and oldest will be 18 next April.....so we are all in a different place.  Good luck, I think your daughter will understand more than we give our kids credit for and may even ask you questions.

Love & Strength to all who need or want it.

Today's crisis - dad has fallen getting off the commode and has split his head open on his walking frame. He has gone off in an ambulance with mum to A&E where he is getting stitches and they said they "might" keep him in for a couple of hours for observation. A couple of ****** hours?? This is the third time mum has had to call an ambulance for his falls in the space of 4 days - how much more has got to happen before she gets some help? As soon as my husband gets home, I'm on my way up to meet them.

Sorry for the desperate post :(

Thats disgraceful Deli.I hope you will now manage to get help.HUGS xxxx

Thank you Janique, much appreciated.xx

Dad now home after being stitched up (with no local anaesthetic either). Doctor told mum to look out for signs of drowsiness, confusion, nausea, headache, dizziness, seizures. Ha bloody ha. How is she supposed to tell the difference?!

I'm ringing the Mac nurse tomorrow. This can't go on, if there are no beds for him to have respite at the Hospice then some serious adaptations need to be made in their home. She needs a proper hospital bed (downstairs), a hoist of some kind as he is still heavier than her and his legs can't support him at all and he also needs help with coming to terms with the fact that he really shouldn't try and walk anymore as he falls constantly.

Prize for the medical mystery of the year goes to my dad - all that trauma and he still has the heart rate and bp of a man in his 20s ....... He didn't even have an elevated pulse rate, which is more than can be said for my mum and I.

On a lighter note - mum accidentally took his steroids this morning instead of her blood medication (fortunately, she didn't give that to dad). I shall look out for signs of a beard and voice deepening ........

Oh Naomi you must be at the end of your tether.  Ask the staff to perform a home care package review before dad comes home, explain that mum isnt coping and they both need help.  If they say they can't do anything coz its weekend ask for the duty social worker - there is one on call 24/7.  If you still feel you arent getting anywhere ask to speak to the administrator on call (they are in charge of the hospital).  Do try to stay calm, I hope you get the physical support your parents need

Love to all - I am off to celebrate a birthday party and the news of a new baby whcih will make my friends (very young) grandparents for the first time.

joanna xxx