Having a bad day

Hello ladies,

I hope you don't mind me jumping on your posts, your experiences struck a chord with me, as I went through similar 10 years ago, with my Mum. She had a primary brain tumour and went downhill very rapidly. I  helped nurse her at home with a lot of support from carers, District nurse, Macmillan nurse and Hospice. They  were amazing and I was so glad I was able to do that for her. I had the thing with moving stuff out of her bedroom to make way for hospital stuff, which included bed, wheelchair, commode and hoist. ( My Dad even bought a single bed, so he could still sleep in same room ). Having lots of people coming in the house, carers 3 times a day at the end. The Macmillan nurse told me there was no reason we couldn't nurse her at home, so that was reassuring. I had the thing with the siblings, to be fair they did what they could, but expected me to do the lion's share, as I was the oldest. I had the thing with the poo. I had the thing with the reluctant relatives, in fact my aunt and her husband never did visit. So many things.

It is lovely you have this group and are supporting each other, and you all sound amazing! Also Sue, who went through so much with her husband, hope to-day goes as well as it can.

Again I hope you don't mind me posting, I am here because I am going through it again with my Dad.

Wish you all well.

Take care, Anneteresa

Haven't seen mum today but text this morning and said she wasn't too bad. My sister said mum ate all her lunch, then ate a whole apple turnover. She's had a much better appetite over the last few days; which is good. 

Went to visit mother in law tonight. She's not very well either so more worry.

Am at mum's tomorrow. Missed her today so glad to be seeing her.

Been thinking of you today Sue. Hope you're ok.

Hello AT - of course join in, i read yr post and thought omg! Is it better or worse to know whats ahead? How double wretched that C has tried to steal both parents! I very much hope that dad is comfortable? I believe Cancer feeds off goodness, one doesnt tend to hear of baddies getting it and my mum is the kindest loveliest woman who is fighting to save her life still - i think i woukd have long given up. Part of the battle is finding the right help whilst one grapples with all the emotions, terror for loved one, fear for self, selfish/unselfish thoughts re self. Then the sibling shit. ive become some delicate but Warrior Like Terrier! mums Palliative Care co-ordinator told me in mums bedroom a few days ago that i was like a terrier and she would like me on her team but wouldnt want to be on the opposition. She said no more care cld be offered to mum other than a care home (note, not hospice). how very dare she not understand that i would do anything for my mum to enable her to die at home and fulfill this wish - PCB (palliative care bird) was being paid to sit on my mothers bed and passively slightly aggressively say that 'the computer says no' whereas ive been there 5 days sleeping on a mini single bed in a mini room administering pain relief for mum, 3 gps, 4 nurses over a 3 day period, normally its out of hours. The nurses and gps once in system are great and MC a godsend in mums area but god help me (well he hasnt yet( if mum didnt have TD (terrier daughter)! I didnt like her saying i was like a terrier, no, i wont sit back and see if the right care happens for mum so yes i will hunt and find, so, being a Leo she could have said i was Lionlike. Terrier has hit a nerve. So sorry im rambling (not terrier like) when i should be hunting vegetables for the roast tomorrow as i entertain my sisters daughter and grandchildr and one of my brothers children who

 I feel should be part of our family, not her fault that her father was my dickhead brother, although plse note, i love my brother hugely, but he is a total DH. Then take them to the panto, Greenwich Panto is fabulous. As, after Lion Rant at my sister has resulted in her going to mums this weekend. She has also, at my request and direction arranged for Continuous Care assessment for mum. Btw Marie Curie do a befriending scheme and ive signed mum up, its been very well organised so far and volunteers/crb checked and visit 3 hours per week. Mum is looking forward to it as many other friends have fallen by the wayside even though mum helped them for Years!! Not all, just some.  See Anntheresa this is the place to rant and roar (not bite). Love to all but especially Sue, elenium & jenny and of course AT. Time to walk the dogs and prepare for tomorrow. Actually im really missing mum and feeling i cant phone when sister there. What will happen when i cant phone her as she wont be there!!!!xxxxx

Hi elenium/jenny/sue

Hope your weekends bring some respite or action from all of this journey. X

maisiemae, I think you're a lion and I'd definitely like you on my team!  

I think you should ring your mum.  I miss mum terribly when I'm not there.  I text her every day but if she doesn't answer I always ring.  I too think about what will happen when she's not around anymore.  I've always spent so much time with mum, there's going to be a very large hole in my life.

I've brought my dogs with me to mum's.  She likes to see them.  One of them sits by mum's feet the whole time.  What dogs have you got maisiemae?

Hope everyone is OK.  

Hugs to all. X

Are we all sitting down!? My sister drove to mums getting there 130am (my style due to work) and was there at mums in my little single bed this morning! Its the first time she has stayed at mums for 34 years!

Finally!  

Well, that's it.  I am now done with my oldest brother.  My sister has a hospital appointment next weekend when she's supposed to come.  She's had lots of stomach problems and is losing weight so GP sending her for a colonoscopy - what with mum's history too.  So she asked if anyone else could cover.  I'm actually going on my works Christmas do - which they arranged around me - and staying over a a friends then meeting other friends the next day.  It's the only thing I'm doing for Christmas.  My other sister also has a Christmas do.  My eldest brother said he couldn't do it because he's working.  I asked if he could take a days holiday and he said they wouldn't let him.  So I said that surely if he explained the circumstances they would be more understanding.  He said he wouldn't ask and this is why we have carers now but perhaps my sister could cancel her hospital appointment or I could cancel my plans.  He comes one fucking day a week from 11am until 4pm!  I've used up all my holiday and some doing stuff for mum, I've rearranged my working hours, I hardly see my husband and kids, my dogs have forgotten what it's like to have a regular walk.  Is he fucking joking!  What an arse! And then he says "sorry it's come to this but there will be times when this happens.  I do understand your anger (my sister messaged with lots of swear words at him!) and it must be worrying for you but this is what the carers are for".  Pompous arse!  I just hope that he's never in mum's position and his kids just get the carers to look after him.  I don't get it.  Can he not just put himself in mum's shoes for a minute and realise what it must be like for her.  

Now I've had my rant I'm not going to think about him anymore.

At least my other brother has stepped up,  He's knocking off work early so he can get here to do mum's lunch and tea.  I've managed to get the hospice to come in in the morning, thank goodness.  I know we have carers for mum but she wants her children here.  Why can't he understand that???

Hello Elenium,

I am so sorry to hear all this, it is such a difficult time anyway, without families falling out. I did learn very quickly, what my siblings could cope with, when my Mum was dying. As the eldest I was expected to take the lead, and the lion's share. My sister couldn't deal with the caring, medical and personal care; but she could cook us wonderful meals. My brother did his best, but lived a long way away. He was in fact there with me at the end of my Mum's life. So in our family we did work out what role we had to play. I know this is not always possible, but I would like to say, please be kind to each other. Truly some people just cannot cope with this.

Take care, Annteresa

Thanks Annteresa,

I'm calm about it now.  I am the youngest in my family and they always look to me do everything for mum.  This is my mum's third bout of cancer and she also suffered from depression and each time it was me that did the majoirty of it, even when my children were very small.  I would do anything for my mum but this time knowing that I'm going to lose her makes it so much harder.  I find it difficult to be understanding when they don't tell me what's going on with them.  I've explained how much it's affecting me and I get nothing back from them, apart from one sister.  They've just blanked everything I've said.

When I moved away from where we grew up, I asked mum to come too. It's about an hour away.  My brother tried to talk mum out of it.  He used to visit for one hour each week, even though he only lived 10 minutes away, looking at his watch the whole time. Mum is so glad that she moved to be near me.  She loves her house and is two minutes walk away from me.  My children pop in to see her all the time.  I'm feeling like my brother still resents the fact that she didn't listen to him and this is his way of punishing me.  It's probably not the case at all but he won't talk to me and tell me what's going on.  Anyway, I'm done now.  I don't need all of that drama when I need to be focusing on mum. 

I won't be unkind to my brother (I just won't speak to him at all) but I wish someone would say the same to him and make him realise how his actions affect the rest of us and particularly poor mum.

Hope everyone is ok on this sunny Sunday.  Sorry for the rant but needed to let off steam.

Hugs to all.  Sending an extra hug to you Sue.  X