We Talk Brain Tumours

Will update you all later about the nightmare weekend we've hadwith dad but no time yet as got all the kids running around. Hospice just rung - dad is going in to the Hospice tomorrow. I feel very sad even though I knew it was coming but I feel really relieved also. Mum can't cope anymore, she's done her best but with the heart surgery she had she's very limited in what she is able to do for him.

I hope he likes it there.

Love to all.

Naomi.xx

Joanna,

Thank you so much for all that information. If dad has to come out of the hospice after his week's respite stay we will need all the help we can get. He is deteoriorating daily, the speed at which his illness is progressing is breathtaking. He now cannot stand, walk, talk, toilet himself (even on the commode), feed himself, swallow. Pretty much anything. I am going to try and persuade mum to look in to a nursing home alternative if he has to leave the Hospice as it is almost impossible to nurse him at home.

Naomi,

I know all hospices may be different but mum went into ours 10 days ago - initially for 2/3 days so they could get  balance of all meds right.  She is still in there and ours has said that she can just go home when she is ready.  She came out for the weekend and went back last night, all they ask is for 20% of her DLA for the duration of her stay to help with costs.  Yes its a really sad thing but it is also wonderful in there, she is so well looked after compared to a hospital.  Its small and personal and my dad could not cope -  he is frightened of dropping her all the time, so its better for him for a while.  It should be goodd for your mum to try an get some rest from the physical caring side, she can then spend some nice time with him without having everything to do too,  Mum is deteriorating slightly slower than your dad.  She can barely stand or walk due to badly disabled left side due to tumour damage, and right hand shakes badly at times now and cramps up.  When she comes out she has marie curie who come at night to bath her and get her ready for bed.  We don't pay for this, mum and dad have some money in the bank but not heaps.

Thinking of you xxx

Oh Naomi, just read that and it doesn't read right at all.  I didn't mean that mum is deteriorating slower than your dad, I mean mum hasn't had this that long - only diagnosed in June so at the moment hospice is just for respite - hopefully! Gosh - I didn't put that right at all and still can't seem to put the right words down !! Hope you know what I mean!

SWorthey, please do not worry. I knew exactly what you meant.xx

Our local hospice has only 15 beds. They have said dad can go in for a week's respite but as he is going downhill so rapidly they have mentioned it is likely he will be there until the end. He fell again yesterday and had to go to A&E in an ambulance to be stitched up. Two days ago he was able to stand up for a photo, now he can't weightbear at all. I am pleased for him that his disease is progressing so quickly as he is trapped in his own body and when he could communicate regularly expressed his wish to die. I hope he doesn't plateau at this miserable stage for weeks.

I am pleased to hear your mum's experience of the hospice is a positive one. As dad can't communicate I hope he has some understanding of why he is going there. I am frightened he will think we are letting him down.

Love to all.

xx

 SWorthey - my dad was diagnosed in Oct 2010 and had six weeks RT/chemo. He was quite well until July and it is only in the last six weeks or so that he has gone so dramatically downhill.

It's such a cruel disease. Apart from morning headaches he isn't in any pain - which I know is a blessing - but to be robbed of his very essence, his faculties, everything that makes dad dad has been absolutely heartbreaking and I wouldn't wish it on my worst enemy.

xxxxx

Naomi.  I wish your family a peaceful and comfortable next few days and I hope that your father finds the peace that he so desparately needs.

The district nurse this morning pointed out to me that the huge amounts of pads I've got are indeed the right ones, I was just mis-reading the label.  So, all of those boxes are now stored in the dumping-ground that used to be our master bedroom.

Naomi,

She thought we had put her in there to die and was panicked when we were asking her to go but this left disabled side is also very painful - doesn't make sense does it that part of the body which does not move and feels icy cold can then be painful?  Anyhow, they started giving her some more pills and we couldn't wake her up much so they accepted her in to try and balance all the pills which they have done.  She is enjoying it there too, although we try and have someone there mowst of the day and we go and put her to bed at night.

She said she tried to take all her pills on her home visit on Saturday but dad was watching her all the time. She said she can't live in this shell of a body anymore, she says its not like living, its not like she can do anything and she doesn't want to sit wasting away.  God, I so understand, must be very scary not knowing how you are going to be when you wake up each day.  I keep thinking that a pet wouldn't have to live like this yet you have to watch your loved ones.  So not bloody fair!

x

Not been on here for a couple of days but it sounds like there is so much pain and struggling around its just  so unfair.

A couple of your comments have made me giggle,  Naomi - your mum with your dad's steroids and Pete all those pads!

Kerry - I cannot even begin to imagine what is going on in your world at the moment.  We have an 11 year old daughter and although she seems to have adjusted well to dads illness,  she still has her little weepy sessions and talks about being scared.  I really do pray for strength for you both as it is so so hard.

Pete - caring is hard enough without having to deal with monthly cycles,  I never even thought of that with caring for Nick. I just comment on now becoming an expert at shaving faces!  Have any of the nurses suggested contraceptive injections or the mini pill?  Not sure if Ali could have these because of all her meds but they do stop periods so one less thing for you to do and a little bit of dignity back for Ali.

Sending hugs to you all X

Pete - given that you are a man and therefore not used to buying sanitary protection on a regular basis then I think you can be forgiven for not recognising them as the correct product for Ali!

Keep going everyone.