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!!!!

Rollercoaster

I was thinking that it was all bound to get me down in the end, and I think its quite understandable that my last post was me feeling so down.

I think the blog really helps me as its a way of self counselling if you like. Last night I thought that unfortunatly this blog seems to be becoming more about me and my feelings rather than mums illness. But then I thought, the two are one and the same arn't they?
I felt ok again after my downer, it is so sporadic! When people talk about an emotional rollercoaster, they arnt wrong.

However, I only like rollercoasters if they look safe. I prefer the corkscrew at Alton Towers to the old rickety Grand National at Blackpool.
I guess what Im trying to say is that I dont mind being turned all upside down, let go from the top, free wheeling, as long as I feel safe with them big over shoulder harnesses holding you in.
I guess the irony to this analagy is that the corkscrew has now been dismantled.

Monday Mum didn't get out of bed all day. We called to see her and ended up in her bedroom for the duration of the visit.
She has been making it upstairs in the evening to go to bed as the hospital bed hurts her hips so she has been using the bed downstairs for during the day.

She said yesterday though, was her worst day. She feels so poorly. She wants to go now. She has truly had enough. She said she wishes it was over one way or another. She had made is downstairs but just sat there drifting in and out of sleep.

She doesnt want to move. She made us cancel the trip to the hospice. She isnt waking up until about 1pm every day so sending a bus for her at 9.30am would be a bit difficult to get her up and ready.

We really do need help now. After I have finished writing this I need to make some phone calls.
Mum needs cleaning, and we need help. No one is doing what they said they would. Offering a comode (which we dont need) isnt good enough. Im afraid by the time they get around to doing the assesment for a carer to come and bathe mum or help us. I think it might be too late.

Then this gets me thinking too about all the different drugs that mums taking. What the hell is the point in steroids and anti biotics when she just wants to go?
Why doesnt anyone speak the truth? Like, it may only be a few days.....weeks......just tell us something!!!

Everything that is happening seems to everything that mum was afraid of happening. She is losing her dignity, we are having to do things that I dont think we should be doing. It doesnt bother us really, its our mum after all but with all this 'support' that people keep saying is out there then surely it shouldnt have to come to this, that we feel like we are begging for assistance.

Depressed

I feel depressed today. Maybe I have for a few days.
I have loads of emails, texts and messages on facebook, I even started screening my calls, any danger of serious talk...........I ain't answering. I havn't replied to my messages because I really cant be bothered. Ive been so exausted for no reason whatsoever, just so tired all the time.
I have spent most of the day in bed.

The other day I asked mum if she could go back, would she accept the treatment again, knowing what we know now. I dont know if she knew what I was asking and I didnt get a proper answer.

All along I have always said a massive, positive YES of course it has, it has bought us time together.
We KNEW that the chemo was never meant to be a hope of cure. We KNEW that this stage would eventually come. But now, everything, the chemo, the radiotherapy on the brain, trips to the hospital, everything, it all seems so pointless.

Maybe we should have let her go, the palliative care would have been the same. Maybe the buying time is just so we can all get our head around the situation. Why delay the inevitable?

I know that theres no going back, we can't change our decisions. But I just cant help but wonder what we would have chosen if we could choose again.

Its not right is it? being helpless while watching mums body gradually shut down.

Ive been so angry, maybe angry is the wrong word, just get easily het up about things that are beyond my control. Stupid little things ........like supermarkets, councils, not being able to spend as much time as I would like to with mum. The first two examples, my boyfriend is a great help. Makes me see things rationally, at the times when I feel completely irrational.

The last one though, I have to tell myself that even if spent more time with her what would I do anyway? Her general care is being taken care of, what does she need me for? nothing..........I would probably just sit there and I dont think we can really have a proper conversation now anyway.

Always tried to see the positive throughout this situation...............Right now........this situation........wheres the positive?

Even More Drugs

Firstly let me start off by apologising for the amount of spelling mistakes in the last post!

Sometimes I get so wrapped up in what Im typing I never stop to check hence, scared suddenly becomes sacred.

Speaking of scared, when I saw Mum yesterday she said she was scared of going to sleep in csae she didnt wake up, but yesterday morning she was that bad she wished she hadnt have woke up.

The other day I took my son round and managed to keep him quiet with headphones and various things to watch on youtube. So we managed to stay for a while.

The dog farted and I thought it was my sons nappy, as I was changing it I realised it wasn't him but the dog. Mum managed to get up out of her chair and quickly waddled over to the window to open it.

Mainly now all the time that we are there she has her eyes shut, even sat up in her chair. Her face looks like the light hurts her eyes but when I ask her if she wants me to turn the big light off she says no.

We know she has lost even more weight as my sister said that when she helped her out of bed the other day, mums rings flew off her hand.

Yesterday the Macmillan nurse and the gp came again. They said she should be on the morphine pills like I said the other day and use the oramorph to top up. They have iven her codeine phosphate linctus to supress the cough as well as the steroids, the acid reflux pills, cyclazine and now anti biotics too to try and clear any infection on her chest.

They have arranged for a visit to the day care at the hospice for Tuesday.
When I went to see mum yesterday she told me it was 'tomorrow' (Thursday)
She seems to be getting confused a lot, and I know that my son touched her legs yesterday and she let out a cry in pain.
And I mean he touched her leg. Her skin seems very tender. I know my sister said that Mum was strugglimg to remove the cap from a deodrant bottle even though the top was already off and when she sprayed it, it hurt her skin.

I could only stay an hour last night and felt a bit crap because of the short visit, but then later when I came home I remember a conversation I had with mum a couple of weeks ago about she didnt want anyone moaning if they wern't there at the end.
She said she didnt want anyone upset if we missed it. Its not important.

Today I think me and my sister are going to try and work out some way of how to bathe mum.
One suggestion I had was my sons paddling pool in the front room, let mum stand in it and she can just sponge herself down.
This is the stuff we need help with...............How are we meant to do that, plus if mum isnt willing then what are we to do.

Guess we'll just have to see what today brings.

Bad Day

Mums had a bad day today. God its so up and down, there really is no consistancy to how she feels.

Yesterday I saw her briefly as I had husband to be and my son in tow on the way back from a walk. She was enjoyng my son being there for a short while but I think our visit was just enough.

She didnt seem too bad. Then today her pain is getting worse and my sister said she is saying some weird things, like.............'why is everything green?' and 'Whats that smell?, smells like green'.

I went over because I think her pain medication needs reviewing, I think the others are sacred of giving her the morphine tablets again because they knock her out but I think she needs them now, better to be out of it rather than be in pain.

When I went she wanted to clean herself up a bit so i got her a new change of clothes and underwear and left her to it. She was taking ages so i shouted her to see if she was ok. She was falling asleep mid change.

She wanted to talk about the funeral costs and finances,but she kept falling asleep again.

As I left I said 'I'll see you tomorrow' for the first time she grabbed my hand and kissed it and said 'I hope so'.
She really feels like its coming to an end now.

The gp is meant to be coming tomorrow.
Hopefully now the new year things will start moving. The ocupational therpay team are meant to be coming at some point to show us how to assist mum in bathing and lifting and things. If they feel it necessary they will refer us to social services that will provide a carer.
Heres the big joke............. they need to come and do a health and safety risk assessment before they send anyone to actually do anything.

Health and safety gone mad......but I do understand that if mum weighed 20 stone then sending a 8 stone waif of a carer would do more harm than good etc.

Funny, I have stayed so strong and no even shed a tear throughout Christmas and for a good while.
Just writing this blog I have had to stop go upstairs and compose myself.

I never told you what I got Mum for Christmas, well one of her gifts anyway. I had won at Church's raffle a packet of 3 photo frames. so I found a photo of me, my sister and my brother, all separately, the pic of me was building a snowman in my back garden last year, I remember Mum said that she had never seen me that happy, ever.
The pic of my sister was on a night out and the pic of my brother he was sky diving, but a picture of his face, laughing on his way down.

I put a sticker on the front of the 3 photos, now in the 3 little frames, saying 'all looking happy'

I must admit when I wrapped this present up it put a lump in my throat and brought a small tear to my eye, but just now..............I broke my heart, talking with my boyfriend about our combined parenting skills. I think its all any parent could ask for isnt it? Just that our children grow up to be healthy, well balanced and most of all happy?

The one thing that keeps cropping up in conversation is I really dont know how people with no family manage.

I read a comment on my last post, from a man who has lung cancer. You know I always thought this blog would be read by friends, and people with family members with cancer in the hope that I could say,'you are not alone'. I cant believe I was so naive, it never crossed my mind that people with Lung cancer might actually read it too.

I am honoured that he reads it, and I really wish him and his family all the best. Im glad it makes him smile form time to time, and hope I can make him smile again.

New Year

I spent a couple of hours at Mums last night, and she seems more 'with it' than I have seen in the past few days.

Wednesday, she was really bad, My sister had text me in the morning to say mum had had a bad night and that she had rang the doctor. She didnt really know who she should phone so she phoned everyone, the gp, the nurse, the macmillan nurse. Sometimes it feels like we are just bumbling our way through this.

I went over to find Mum in a lot more pain which she said was in her lung. While we were waiting we talked about the possibilities of what could happen once people started arriving. I made sure she wants to stay at home, throughout all of this. I think its best to try and discuss things like this while she is still capable of making decisions.

The nurse came first, by the time she had got there Mums pain had subsided somewhat and had even managed to get some make up on, I swear she makes us out to be liars......... lol.
We worked out the last time she had anything to eat was a mince pie on Christmas Eve.

I had to leave before the GP came but he prescribed some steroids again to try and get her eating again.

At the moment these do seem to be working, she is eating tiny amounts but anything is better than nothing.

She had been falling asleep mid conversation up until last night. You could sit there and she would say something then go quiet, when you look over her eyes are shut!
When she is sleeping her cough is very bad so very disturbed sleep, maybe that and the combination of the drugs is knocking her out.
While she is dozing though she is shouting things out which are funny yet disturbing!

Like 'DO you want stabbing? Any of you thugs?' and singing.........Boney M!!! 'Ra ra rasputin'

I know a lot of it is to do with the srugs but bloody hell......Boney M? Where the hell has that one come from?

We have been given some cream which prevents bed sores. We have been advised to put on her bum.
Mum said this is everything she didnt want to happen.......I managed to persuade her to let me have a look and put cream on. It bothered her and she was embarrased, a lot more than I was.

We have decided that this should be my designated job! Plus it guarentees that I will go and visit every day.

I have been focussing on the wedding again really to try and keep myself busy, maybe it is a diversion from dealing with all this, but I feel better planning a future and looking forward to it rather than dredding what the future holds.

Personally I hate New Year and dont get it........at all. Its just a date on a calender, people use 'its a fresh start' as an excuse...........No its not....... If you really want to make differences to and in your life you start today, not tomorrow or wait for a new year to begin. Surely its the here and now that counts? You actions today will shape tomorrow.

Either way.............Im glad Mum made it to 2011. :)