We Talk Brain Tumours

Thanks Martyn x

Yin and Yang,

I think what frightens me the most is losing my dignity.  The thought of losing motor functions or being incontinent terrifies me.  Most of the time I try not to think about it but I know eventually I will have to deal with one or more of these issues.

I fear for my husband too, having to take care of me as if I were a small child, how do you manage?

Love and Peace

Indie

The hardest part is not the caring its seeing my hubby having one bit of dignity removed at a time. I try to let him do as much as he can although this is reducing daily. Believe me when you love someone so much it is second nature to care for their every need. As I say the difficulty I find is watching my hubby so broken. Such a strong man. I hope when the time comes for you  it works somehow. He always said before he became quite so imobilised that he didnt want to be a burden to any one. How can your soulmate be a burden? x

Thats exactly what my Husband says, that I could never be a burden and yet I still feel as though I am.  He does so much for me already, he is a complete saint and I couldn't get through this without him.  it sounds as though you are doing an amazing job too.  I really hope you manage to enjoy Christmas, we must simply count our blessings I guess.  Thank you for your support.

love and Peace

Indie

Hey support is free 24/7. I feel privileged that I can care for my gorgeous hubby. Hope your Christmas is ok as possible too. I get my strength from my husband strange though it may seem. I couldnt manage without him. When he was given initial diagnose a nurse took me to one side and said "do you have anyone that can be with you" I must have given her an odd look as I explained I had my husband in the nearby bed!. Some people find the whole soulmate thing hard to grasp. Its like all the people you ever need rolled into one person. MY HUBBY! x x

Hi everyone

Y&Y, you're right about the loss of dignity and I suspect it would be most people's worst fear, it is mine. 

Sarah (Indie), that said about the loss of dignity I want to assure you from a wifes/carers point of view that I would much rather care for my husband than have any carer to it.  I'm not saying I wouldn't have any carer, but that I would rather be there for him - I want to know that I can look back and know that I did the right thing by him - he always has by me.  We said for richer for poorer (we've had the rich part - we're currently in the poor part!) in sickness and in health (again we've had the health and now it's the sickness - shame that poor and sickness come as a double whammy though) - and we meant it - there's not a thing I wouldn't do for Peter and I'm sure most will be saying the same.  What I'm trying to say to you is that you're husband will most likely be thinking and wanting to do the same kind of things.  As carers, watching the people you love above all else in the world is the most dreadful thing, the other things that you are fearing are practical issues that we don't fear, it is something we CAN do as so often we are left on the side just having to watch as there is not a lot we can help with - I just wanted to try and allay some fears, to tell you that although we all would dread becoming less than we were  (like Martyn said about D the same is true of P, he hates the life he leads - he has no quality these days but we exist and we do our best) there is nothing us carers wouldn't do for you.

I do have to add to this that I have instructed my leg waxer that if for any reason I am ever admitted into hospital for any length of time she has my permission to come and give my legs a wax - I think this is an important issue and perhaps I should have it put down in writing so all medics know my wishes - we all have appearances to keep up after all!!

Well it's grim, grey day up here in Blonde Towers - P is in bed sleeping and I am doing my general fafffing about.  Peter had a bad weekend with his swallowing, a lot of choking and gagging.  I have to start to seriously consider if a feeding peg should be done sooner rather than later - but today he doesn't seem so bad so again I'm putting it on the back burner - I'm finding it a hard decision, partly because it's ending up being my decision not Peter's.

Take care my friends, old and new - xxxxxxxxxxx

Mandyr- so true what you say-no one looks after your own like you. Not sure about the leg waxing though? Grim day here in the South too. My hubby slept most of day in bed. The house seems so empty even though he is upstairs. I have put table and and chairs for two in our bedroom so at lunch we pretended we had hired the Pullman carriage on the Orient Express and dined there. Its as far as I can manage to get him at the moment as his mobility is poor. Still it was lovely and he could manage to feed himself as only his right arm is working. Home made steak and kidney pie tonight on our Orient Express. Hubby has requested a fine red wine to accompany.

Martyn I know you will like the Orient Express idea-kind of fits in with the theme. My hubby likened it to that even though he has never read this thread. Must be a man thing!

Love to all fighting this disease. x

Sorry Mandy forgot to say -whatever decision you make about feeding peg when the time comes dont feel guilty. Its so hard making such important decisions alone isnt it. We always decided everything together and it was a relief not to have to decide alone. I know you will do the best. Just wanted to say that. x

Indie,
I just want to echo what the others have said about caring. Really when you love someone and they need help, it's a privilege to be able to look after them.
It's perhaps an odd way to say it but really, that's how I experienced it.
I totally understand your thoughts about dignity and again echo what the others have said. But don't forget bts are hard to predict and not everyone gets the same symptoms.

Y&Y thinking of you and wishing you strength. Loved the Pullman coach idea xx

Robin, Thanks and I'll be along to the guards van with my buns in a jiffy!

Miggins xx

CH- would your buns stretch to the Pullman Coach? Martyn thinks they are wonderful. Thanks for your thoughts. x