June

At 8.55pm on Monday 24th January 2011, my mum took her last breath.

I am glad that my sister, myself and my brother were all there.

Im certain this photo is how she would like to be remembered.

My Mum

June Garside

2nd June 1944 - 24th January 2011

A Rock and a Hard Place

Last night was possibly the strangest night of my life.

I had arranged for my boyfriend to have my son and I went to mums.

She had been restless before I got there. Shouting the word 'Mam' and reaching out.
My sister said this was the most distressing day so far.
When mum was reaching out though she had her hand on the controls that raise the bed. (good job my sister managed to stop her from pushing them!)

When I had got there about lunchtime, mum was in a comatosed state. They had started mum on the 'pathway'.
Apparantly this pathway is also known as an 'ICP' or intergrated care plan

They ran through with us who we need to phone when mum eventually does pass.

She doesnt respond at all now and breathing is pretty shallow and quite fast, with the odd groan thrown in.

She is lay on one side facing the window though her eyes are closed.
I was sat in the chair behind her for a few hours last night on my own. When my sister returned to gather some things from her house, mum was hot. I hadnt realised. I had left the central heating on and mums cheeks had become flushed.

We all stayed awake as long as we could and talked, laughed and cried. I did get told off though at one point as I didnt realise I had my foot on mums catheta draining tube. Ooops
We have had to find things to laugh at during all this. Although sometimes it has felt a bit wrong to be laughing. I honestly think that mum would have been laughing with us.

During the evening her face started to change, all lines dissapeared from her face and she looks rested now. Her chest started 'rattling' and I lept up thinking'oh my god is this it?'
It wasnt though, the rattle went of its own accord after about 40 minutes.
The evening nurse said that if the rattle comes back and gets too distressing they can come and give her some drug that clears it.

There was myself, my sister and my niece there and we stayed all night. We tried to take it in turns to sleep, but it was just awful. At one point I ended up on the floor at the bottom of mums bed with a quilt but I didnt sleep. I was listening to her breathing, then I was dreaming, then the sound of the driver made me jump.

At 5.30am I decided just to sit in the chair. I suppose it was then I started thinking...............

My mind wouldnt stop..........At first last night I thought I would like to be there when mum took her final breath, now Im not so sure.
I know mum said numerous times to me that she wasnt bothered who was there at the end.

I think your mind starts to play tricks on you, a felt a breeze on my left arm no matter where I sat. Then I was hoping there wasnt some big dramatic exit and a wail fom mum. Hoping that she wouldnt go while it was just me in the room. I felt brave while we were all there. I felt scared.

I couldnt wait till daylight, I dont know what difference that makes but I was relieved when my sister woke up in the next room after her 3 hours of sleep, and daylight came.

I came home this morning, I have been missing my son. Its like having split loyalties, when Im at mums I want tobe here. When Im here I want to be at mums.

Considering my mum was so inpatient I can believe she is hanging on like this. I told her when we was alone today that it was ok, she can go when she is ready.

Part of me hopes I am there when it happens, I wonder what mum thinks? Is she hanging on for none of us to be there...........Is she hanging on for ALL of us to be there? I dont know, this is it isnt it? A rock and a hard place. I want her to go soon, but I also want her to hang on.

Pathway

Its been a rough few days since my last post.

Mums still hanging on, but it may only be a matter of a day or two now.

The driver now has diamorphone aswell as the anti sickness drugs.

Mum has started the biological stages of dying. She is having the odd hallucinations like having a drink from her fist, like a child pretending to have a drink.
Last night she told my sister that she had seen angels and reached out. She has been saying things like 'Not Yet' and asking for her mum.

Her body seems to have stopped absorbing fluid and she is now drinking from a 5ml syringe, but sometimes this just dribbles back out again.

I was very angry this morning, wound up. I just want to help my sister, be there for mum and do my bit but Im so limited with my little boy. I dont know what I can do to help. She needs rest too. Its almost like having a new born baby again. My sister is sleeping in an armchair at the side of mums bed.

I have been finding it difficult to be upset at times. A lot of what made my mum, my mum is being consumed by the cancer. Sometimes I look at her and see a shell. Her eyes no longer bright but sunken, a mouth that is now a grimace or a snarl rather than a laughing smile.
What once was a happy size 18 is now just bone, hardly any supporting muscle.

She didnt recognise my boyfriend yesterday though she does recall seeing him before. Then tonight my cousin came and Mum knew him instantly. There are moments of complete coherancy, perfect speech and lucidity. Granted, these moments are few and far between but they are still there.

Today I have stayed most of the day. Macmillan came and suggested that mum is put on a 'pathway'. I wasnt entirely sure what this is all about, all sounds a bit dodgy to me. But once the district nurses came they explained that it was like a checklist that they use in hospices when it is coming to the last few days of someones life.
One of the district nurses said that it makes the end a lot nicer and easier, though Im not entirely sure how a checklist can do either of these things.

The nurse that came out today said that she didnt feel that mum was ready for the pathway, so it hasnt been done yet. The speed in which mum has deterioated in the past few days, I am really preparing myself for the worst. My car is reversed into the driveway just in case I need to go anywhere in the middle of the night.

What The F**k?

I know its unusual for me to post twice in the same day but this was just too much of a little jem not to be shared.
Hopefully after my last post moved a few people, this might at least get a smile.

I have been to mums today, the driver had already been inserted, but not long after mum acidentially pulled it out. We had to phone the nurse again to come and put it back in.

As we were all sat there waiting for the nurse. Mum was sort of sat up half on the bed.
Her eyes opened wide and she looks at me and says 'What the f**k?'

Then shut her eyes again.

I said "For God's sake, dont let your last words be, 'What the F**k?' cause me and Janet might end up in prison!"

A Mothers Kiss

Seems that mum is being sick an awful lot now, every hour or so.

The GP came and gave her an anti sickness injection last night and the syringe drivers are being fitted today.
These are little battery operated boxes, taped to the skin where the drug of choice (anti sickness or pain relief) can be put into and it dispenses it through the syringe at regular intervals.

We were told last week that we would know its coming to the end when these drivers are inserted. Of course now, knowing that this is happening today has caused a lot of distress.

The macmillan nurse did say to my sister that if mum stops being sick then they can remove the drivers. I think this has angered my sister. And I understand why. It feels like they are giving us false hope.
Without sounding like a pessamist I think this is it, the decline. There is no hope..........just one of a quick and peaceful end.

I have just spoken to my sister and Mum had a rough night last night, the sickness has continued despite the anti sickness drug so I think the drivers might be for the best.

Last night when I left, I said 'I'll see you tomorrow mum', she replied, ' make it soon'
I did something I haven't done, As she lay there curled up in her foetal position she seems to have adopted. I leaned over and kissed her head. I kissed it in the way I kiss my son's head. Like a mother. A kiss from a mother to a mother. She muttered, ' that's nice'
and low and behold, I cried.

I guess I kissed her knowing that if the drivers are going in today then she might be knocked out so when she was still a bit with it, I let her know how I feel.

Update

Mum's still hanging in there.
She is now confined to her bedroom. Her body is deteriorating.

She is sleeping a lot and when she is awake although some things make sense and she tries to join in the conversation a lot of stuff is completely random.
Sometimes it looks like she has been hypnotised, she will raise her head, speak at random then put her head down again and close her eyes.

She says she is dreaming a lot. I am too........... The other night I had a dream, and in this dream, I was dreaming!!! What I was dreaming was that mum had died and no-one had told me.
Now there's one for dream analysis!

Her skin is itchy which I think is because its dry and not really getting air to it either.
We moisturised and put a new cotton nightie on her last night.

The other day when I went upstairs she was curled up in a foetal like position, naked, she has even stopped covering her head now.
Her body was so pale and although not exactly skin and bone but noticeable weight loss.

I got her dressing gown on her and covered her up.
My mum was always on the go........always doing something........painting, decorating, cleaning, working, always so active, now this. She can barely sit up herself now.

Last night, I took my laptop to show her some photos and videos of my son. She couldn't keep her eyes open to look at them but she tried.
One of the things she said last night was she asked me what would my boyfriend like to eat if she made him something. I said he would eat anything. It was quite sad but amusing at the time, but when I got home and relayed the dialogue to my boyfriend..........I cried.

I always manage to stop myself quickly, I don't want my son to see me upset and I also think I'm a bit afraid. Afraid if I start crying, I might not be able to stop.

A lot to do today!

A very quick post this morning as we have a lot to do today.



Yesterday was so busy, phonecalls and people coming to Mums house, after doing a lot of whinging we got visits from the gp, district nurse and macmillan.



Today I have to go to the gp's to pick up a prescription which contains 'end of life' drugs.

When mum stops being able to swallow her pills, any drugs can be given through battery operated driver. Once we have them in the house then everything is to hand.



The hospital bed from the front room is being dismantled and moved upstairs to mums bedroom, which we have to dismantle and drain her bed (its a waterbed!).



She now has a pain which the gp thinks could be something to do with her liver.



This morning the palliative care team are coming to discuss things and later this afternoon the occupational therpay are coming to discuss aids to help us.



Yesterday morning we managed to get mum to the bathroom and let her sit on the edge of the bath while she sponged herself down.

This alone was so traumatic. It took ages and a lot of pain and tears to get her to the bathroom.



She doesnt want anyone else to look after personal care and was even funny about me being there yesterday aswell as my sister.



We have been told to have a think about what would help us out but we feel like we are in a viscious circle as I think first we need to know what help IS actually available to enable us to decide.



Right lets going on today!!!!