Hi Monicaschild,

I am sorry to hear that your mum had another bad day today, but it sounds as if you have made the right decision to keep her at home. It would have been too much of a strain on her, given her prognosis and, it doesn't sound as if there is anything to be gained by admitting her to hospital.

We have had a similar situation with my mother-in-law, who is having palliative care in a hospital bed at home (not cancer related). We have carers coming in 4 times a day to wash and turn her and the practice nurse comes in twice a week. This is a lot for my 97 year old father-in-law to cope with. Sadly they are both totally deaf, so it makes communication difficult and we have to try and pre-empt her needs. It must be difficult and distressing for you trying to cope with your mum's agitation in the evening, particularly when she cannot tell you what is troubling her.

She stopped eating at Christmas and has been living on Ensure drinks and puddings ever since. She was good at drinking liquids, but has been refusing them latterly. This could be because she has also refused her medication, so we now have to crush it up and put it into some juice.

It is heart-breaking to watch her decline like this and to see it all so drawn out. If an animal suffered like this it would be put down, yet we leave peple to suffer - I'll never understand why.

Please don't castigate yourself for wishing that she would slip away in her sleep. I certainly felt like that when my own mum was in her final stages and, I must confess to a great sense of relief that she was no longer suffering and in pain once she passed. Don't get me wrong, that was 20 years ago and I still miss her dearly, but she had no life at the end.

I am thinking of you all and am sure that you will find the strength to see this through.

Kind regards,

Jolamine xx

@Annieliz and [@Jolamine]‍ 

Thank you both for your kind words.

It looks to me like mums top lip has dropped. There is a word for this but I can't remember it. 

Today I was holding her hand and she was a bit fractious. She squeezed my hand and looked at me.... and held my gaze.... as if to say... I have had enough. 

It breaks my heart. My step dad was short with her twice today... because she is still stubborn and refused his help with some yogurt... about all she can swallow. And he said..." Don t get nasty".. "you can't be that bad is you are getting like that". I wanted to smack him I  the face. The stress is probably getting to him too, but I feel so protective of my mum. And didn't feel she deserved that at all. 

I want to get in that hospital style bed and just hold her. 

I feel under so much pressure, I am.living with mum and step dad, whilst all this is happening. I live 2 hours away so I daren't go home. My husband and I are separated and my lads are at uni. I had started a new job 3 weeks before mum was given her one month's prognosis due to brain mets. Work have now stopped paying me. But are holding my job. So will have no money after my bills go out. If I go back to work now I will be worried that mum will pass away without me here.  

There is no magic wand as well all know. I am scared to go to sleep in case she slips away. But I need to sleep. I am not one who can manage without it. 

I don't know where I am going with this waffle but feels better to get it off my chest.

Love to all x

Hello Bex and sorry for jumping in on your reply to Annie and Jolamine. Your mum seems to be getting weaker but still holding on. So difficult for you and with the added stress of your work situation and finances you are under a lot of pressure wondering what to do for the best. Unfortunately while going through these situations with loved ones, the practicalities still go on.

I lost my mother in 2011 to AML and I remember getting stressed and annoyed at times with my father who would tell her to make an effort to get out of bed and he would say if you don't eat you will never get better. He was 80 years old and I think he wasnt able to accept that she wasn't going to get better and he was going to lose her.  

You are doing so well looking after your mum and it was so brave of you to join this forum and ask for advice, I know that when my husband was dying I could never have written about it .

Brave lady, I hope that you all have peace very soon.

Lynne.

Thank you Lynne for your comments. 

It does seem callous to have to think and indeed mention work and money. But my life will continue when my mum has gone. 

I am thinking I might go back home on Friday. I just feel.the need to get out this situation for a bit. 

Mum seems to be eating again. But is in bed 24 hrs a day. 

I think that with her carers and my step dad, the situation will have to be managed. 

Mine is the only income as I live alone so I can't not return to work. 

And live with the guilt of not being here til the end with my mum xx

Hi Monicaschild,

Is your mum getting all the benefits that she is entitled to? She may not need them at the moment, but I'm sure that she would be happy to help you out.

Have you looked into non-contributary benefits, whilst you are having to take time off to look after your mum? They certainly won't be anything like your monthly salary, but might help you out a little. She might qualify for carer's allowance and PIP (Personal independence Payment). If this is being claimed, when the recipient has less than 6 months left, I believe that payment can be accelerated.

There is usually an advisor in the hospital, or you local Citizen's Advice Bureau can help out. If there is a facility in the hospital it is probably best to use this, as the staff there are familiar with cancer and know how to fill in the forms. The PIP application is a brute (I think 58 pages), but you need someone with the appropriate experience to fill it in.

I am glad to hear that your mum is eating again.

Kind regards,

Jolamine xx

Hi Jolamine. 

Yes mum gets attendance allowance. I was wondering about claiming carers allowance. As work have stopped paying me.

But the whole thing about filling in forms is just a horrible though. 

I wonder whether to ask McMillan nurse? They are using good at form filling. 

Also. Do ALL people stop eating before demise happens through cancer.? Or can some people still eat? 

Thank you 

Hello again Bex. Having been reading Jolamines good advice 're benefits that you maybe entitled to. Wondering if you have a cancer specialist nurse? My husband had and I rang her many times for different things, she was a gem. She applied on hubbys behalf for PIP which as Jolamine has said was paid immediately as he was diagnosed as terminal with 6 months or less. I managed to carry on working until 3 months before Alan died when he could no longer be left on his own. Our McMillan nurse advised me to apply for carers allowance and she arranged for somebody from DWP to come to the house and fill in the forms. Only thing is it is not fast tracked like the PIP and Alan died before I received it. Not sure about eating, Alan did manage to have soup and ice cream 2 days before he died but as he was prone to choking , the nurses advised just to give him drinks which he had up until the day before he died. My mother didn't eat for at least a week before she died with AML It would seem that every patient is. I would just reiterate what Jolamine has said and speak to somebody regarding your financial situation . Caring thoughts. Lynnex

Hi Bex,

Carers allowance is paid to your mum, but I'm sure that between you this could be allocated to where it is needed. There are 2 levels of PIP payment and this is non-contributary. Your McMillan nurse may well be able to help you with this. If not, I'm sure that she can point you to someone who can.

Many people do stop eating towards the end, but not all. My mum ate as normal up to lunch time on the day she died. She died at 4.00pm. We are currently caring for my mother-in-law, who is having end of life care at home. This is not cancer related, but she hasn't eaten any food since Christmas. She has been drinking Ensure build up drinks, which are prescribed by her GP. The dietician assured us that there is sufficient nutrient in this to keep her going, but we are surprized that it has kept her going for so long.

Kind regards,

Jolamine xx

Thanks Lynne for your help.

[@Jolamine]‍ 

Thanksnfor that. Everything I read about EOL states the patient will stop eating. If we ask mum does she feel hungry she will usually say no. But if we just give her food she will eat it. 

Today me and step dad went for lunch out as my mums sister  came over and relieved us for a few hours. I said to my step dad.. Don t give mum 'choices' when it comes to food and drink... it confuses her. So he agreed . When we got back he asked her was she thirsty did she want a drink. What would she like to eat was she hungry. Now given mum has brain mets in frontal lobe of brain  that is 4 questions that need answering..... so she just says NO!

I just went to the kitchen made mum a drink and potato with cheese and beans. On the time he was still asking what she wanted/surprised she was not hungry.

I have had to come up to my room, as it just does my head in. The house is silent. I miss my home, my.labrador and just my own environment. 

I so want to go home for a break this weekend ... but I am scared something will happen to mum when I am not here. I just want to scream.

What a whinger I must seem. 

Bex