We Talk Brain Tumours

Morning/Afternoon all.

I have just seen my dad. He is stumbling so much now, he fell to the right many times in the two hours i saw him (his tumour is on the left side of his brain).

He now thinks my mum is me and calls her Gnome (his nickname for me). He talks to her often about her mum (her). It is like I'm familiar to him but he just can't place me.

He doesn't really talk much now. It used to be that he spoke to us but spoke nonsense but now even his words are gobbledygook. When he is coherent he talks about there being thousands of people around him and points them out to us. Today he mentioned talking to his mum and dad (they died about 14 years ago). I have reached the stage where I humour him and go along with what he's saying because if we question it he gets distressed.

I hope he won't mind me saying this but he's now struggling with constipation despite taking his prescribed laxatives. Today he finally managed to "go" but he got upset in the toilet because he didn't know how to make "the poo go away". Effectively, he has forgotten how to flush the toilet. Mum helped him and it wasn't a big deal for her but it's just another shred of independence that has been taken away from him. She helps him shower now but it's getting too dangerous as even sitting down he is slipping when she lifts him out. He can have a bath at the Hospice once a week and I think that is what they will do as to be honest he doesn't move around so doesn't get sweaty or dirty or anything.

Tomorrow he is going for his MRI after last week's cock-up and then to see his oncologist. While he is there his hospice nurse wants him tested for diabetes as he has an unquenchable thirst. He had four pints of water while he was here! He was tested in May and he was borderline so we shall see what tomorrow brings.

I feel really upset again now. I love seeing him as I want to enjoy every last second I have with him but even over the period of three days he has gone further downhill.

I must end on a positive - now his steroids have been increased so much he finally has his appetite back and enjoyed two huge slices of cake this morning. Admittedly he spilt half of it down him but for now I cling on to the little things.

Love to all on this beautiful sunny Sunday.

Naomi.x

Pete

I am a HR Manager in a bank which is why I was suggesting to ask about your companies sick pay policy.  I thought that they had given you 6 months carers leave from what you had put,  apologies - my misunderstanding.

Carers allowance will only be paid if you earn less than £100 per week so that doesn't look like an option for you unfortunately.  If your company are offering to go down to 75% pay I would recommend taking that but make sure you get in writing how long that will be for just so you know. If you are in the company pension scheme,  I would also ask if it will affect the companies contribution to that just so you know.

Naomi, sorry to hear that you are having a bad time at the moment.  Hope things pick up for you.

x

Some companies are quite good and pay this for a further 3 months then down to 50% which would also be for 3 months so still more than carers.  One other thing to say about carers is if Ali is receiving full DLA and you claim carers, one offsets the other so DLA will be reduced. 

If you have a mortgage and are not covered by payment protection,  some lenders will let you defer payments for 6 months which may also be worth investigating.

The benefit system has you by the short and curly's i'm afraid.  Seems like if you are married and your partner is on decent pay you get nothing other than DLA and free prescriptions.  Frustrating I know,  Nick's company only pays SSP so we just have my wages and due to my earnings we get nothing too!

One thing I did do which was very useful if you have not already done so, contact your local council and get a carers assessment done on yourself.  They will cover absolutley everything off with you and you will also get a one off payment for yourself to spend on either time out, a new TV, laptop or something like that. You can claim this once a year.

sorry - not sure how I managed to get naomi's message in the middle of Pete's.  Not been on the wine yet, saving that for later

x

Ah Liz, sometimes these things happen.

Naomi, sorry to hear of your frustrations, but you're doing the best that you can.  It's painful, but all we can really do is deal with each day as it comes.

Liz, thank you very much for the information, which I will digest. Hopefully we can sort something out that doesn't lead to too much hardship. If push comes to shove, I might have to go back to work again, even if it's part time.

I'll talk to my HR person tomorrow and see what the options are.

Ali's been pretty weak since she's been in hospital and isn't really capable of the standing for the commode as she's been doing before.  So now I've taken to changing her on the bed which seems to be working a lot better even though it's taken away a bit of Ali's independence.

Thanks Pete for that message.

In a way, changing Ali on the bed does take away a degree of her independence but it isn't necessarily a permanent thing and as long as you keep her clean and comfortable that's all you can do. You know that if the tables were turned Ali would do the same for you. You're doing a brilliant job.

I hope that she regains some strength soon.

Bit in the Mail on Sunday "You" magazine about 6 women in Yorkshire who have, because they have been affected personally by BTs, started a foundation for research into "the forgotten cancer" It is called the PPR Foundation Brain Tumour Research Project.   We are not alone.

love to all

Cathi x

Yes Cathi.  I really hope that more research is put into the causes of brain cancer.  | feel that prevention will be far easier than cure.

Naomi, changing Ali on the bed I think will work out well.  It's a softer approach and allows me to hold her in a way that's nicer than trying to lift her with my hands jammed into her armpits.

This afternoon, Ali told me that she loved me without me having to say it first.  It was a beautiful moment.

Oh Pete. That must have been fantastic for you and Ali too. Sure that she loves you more and more each day and is so thankfull that you are there to help her with her needs. You are doing everything right. Lots of love and strength to you both .

Love from jmd

Aaaw Pete! That was so lovely! Make's it all worthwhile hey. Hope you get lots more moments like that in the days to come.

My mum would agree with your approach - having had to haul my dad out of the bath today, pretty much dragging him by his armpits meant no dignity for either of them. The Hospice has a bath that is in the shape of a wheelchair/upright chair and it's huge. A large proportion of their day patients go to the Hospice simply to use the bath. The water can be filled to chest depth if necessary. Mum is looking forward to washing him in it at an eye-to-eye level if that makes any sense?

Naomi.  I think that your father having his baths at the hospice instead of at home would be a wonderful idea, especially if your mother would be the one doing the washing.  This would give your mother reassurance that his bath entry/exit will be smooth ands comforable, and also help your father adjust to the hospice as a positive place to be.

Your mother is being incredibly strong.