We Talk Brain Tumours

Thanks for your reply Mandy. You have made me realise that I really need to start asking for help from hospice, although I did kind of drop some hints to the nurse on Monday when she was here.

Fortunately G was in our bedroom when he fell - our carpet is fairly new and has quite a thick underlay, so once I placed some pillows under his head he quite happily fell asleep. Sometimes he is able to use his own strength to get out of a chair etc but I have noticed that when he is tired he just can't do it.

He has been asleep all day, so I can see another long night ahead of me. I'm feeling a lot like I did when I had my newborn babies.

XXX

Good morning to all,

Pick up a set of UK Boggies!!    Robin,  we're not that sort of train surely?  besides there's enough talent on here to chose from without risking the unknown!

Hi Daisie,  so sorry about the terrible situation you are in, but great advice as usual from Mandy.  Fortunately I am 6' 3" and Doreen now 5', so it is easier for me, but as she said speak to a MacMillan nurse and your GP.

Robin, as you know the neurologist suggested that Doreen commence Keppra if the switch back from Epilim Chrono didn't bring about a reduction in seizures.  After a small blip she has only had one small episode during the past 5days, she seems much brighter and her mobility has improved slightly. Her sister came down yesterday and she commented on these improvements, so we don't have the need as yet to make the switch.  I've posted something similar before and then regretted it, fingers crossed eh?

Best wishes to you all.

Martyn XXXX

Daisie, My partner had a shortish phase of falling at a point when he was still able to walk (just) but not able to remember that he should call me first.

If I was to give some advice it would be do try to get some support in place now - and that goes utterly against all my thoughts and plans about how I would cope before W became very ill.  But after days and nights of listening out you will soon be worn out and that won't help your husband (as someone said firmly to me).

Throughout the illness I had been utterly determined to look after my partner myself and did so until he became very ill.
But what I hadn't realised - in my determination to look after him single handedly - was that to do that I'd have to stop being the loving partner and become a nurse and actually I didn't want to be his nurse, I wanted to be his loving partner.
Those roles are very different but in my naivety I didn't realise that - until one of the nurses sat me down and firmly told me!

So getting my 'swat team' in - they came in x3 a day to make W comfortable and a nurse who stayed in our house at night so I could get some sleep (that was when W was very ill) enabled me to look after W AND and be his partner.

Again I'm talking about a time when W was very ill but it became clear to me that if I, in my amateur way was doing the nursing stuff (it took me much longer than it took them to turn him etc and was less comfortable for W if I did it alone)  instead of letting the nurses come in, do the necessary for 20 mins and go, leaving me to chat and have a cuppa tea together - be the girlfriend not matron!

I was lucky in that, although I hadn't set things up in time, still, here, this system was set up and running within two days of me asking for help (on our GP's advice) but not everywhere would respond so quickly I think.
Just my thoughts Daisie, I hope it helps a bit.
Miggins xx

Morning Daisie - I see from the time of your post that you probably didn't have a good night's sleep again last night!

I was thinking about you and read your post this morning - the hospice doctor said to me this week that I am a victim of my own success - so if you have looked after your husband without help this far and when the nurse comes you put that mask on and 'Carry on Regardless' - sorry old joke where we listed the number of Carry On films we could be starring in! - the nurse probably won't realise exactly how you are feeling.  So, with thought, I really do suggest you lay your cards on the table and ring them on Monday and explain what the real situation is and the effect it's having on you - honestly they won't mind.  I am one of the biggest problems I know, carrying on without assistance, doing it all - I think if we're born copers it's difficult to change.  P went into the hospice on Wednesday, I slept very, very badly and on Thursday but last night, a whole night of solid sleep is such a wonderful feeling - P is doing ok too as they are adjusting his meds and doing all they can to give us some extra time with quality instead of just existing.                                                                            Miggins post is very apt - she has been a superstar throughout - quietly getting on with what was necessary - so please take her words on board they are very wise and now that P is in the hospice it is making me reassess how I feel about things and how I thought P and I wanted things done.

xxxx

Robin, is that other carriage full of anything round, shiny orange things?
Or does it go clink clink?
It's not ... it's not  ... Mandy and Martyn's Reserve stash is it?
Need reinforced boogies in that case won't we?

Miggins (Frau) xx

Mandy, Daisie, The thing is, you can still stay in control - you should stay in control, when you get help.The nurses who helped me did a few things I didn't like and I I asked them not to do it.

When W was ill but still OK I saw getting nursing help as a failure on my part but that was illogical because I didn't hesitate at all to get every bit of medical help we needed.
None of us would avoid medical help yet I confused nursing help with caring / being the partner - and that was my mistake.
Happily I was able to correct it in time. W needed me to be his loving partner much more than he needed my inept 'nursing' skills.
Miggins xx

Daisie-I think we are where you are all sounds so familiar. Mac team due to contact but not yet.

CH-How lovely you explained the caring thing. I feel the same but thanks for pointing that out. Feel so lucky to have had your advice so I can not feel guilty about stopping being Nurse. Thank you so much. x

Love to all x

There will be fresh mince pies today and mulled in the wine in the Guard's Van.
This in anticipation that some old and much missed passengers who, like me left this thread when Macmillan messed up and lost the old WTBT thread, may hop back on to this Macmillan Flyer.
So to the Guard's Van!

Love,
Miggins xx

Are we going to have films as well?  Can you remember we showed some of SusiiQ's last year? they were very good, but a bit hmmm, risque should I say!

XXXX

Well, anything involving SusiiQ can be a  bit risque? She's been showing films in the back of a camper van, that's what I heard.

I'm hoping Sue and Steve will help us keep her upright - but you never know after a few drinks.
xx