Struggling watching her die

Hi Birdy789

Thanks for sharing. I'm experiencing something similar with my mum right now. She has ovarian cancer and after so many years of chemo, she's now receiving end of life care. Like you, I'm finding it difficult to watch what's happening to her. I see how weak and tired she is and I know the tiny amounts she can eat just aren't enough to give her any strength. I think she'll not be able to eat at all soon. The nurses have been great but I broke down in tears earlier today when they asked how I was doing. I suppose I get some sort of comfort knowing that I'm doing everything I can for her and she'll know that. Also the nurses we have coming in are brilliant with her. It's a relief when I know she's sleeping and not in pain (due to medication). It's little things like that that help me. However, like you, I also worry & feel guilty being away from her, even though there is always someone there with her.

Talking to people and letting out your emotions helps too instead of bottling it all in. 

I hope you have adequate support and are kind to yourself at this difficult time.

Sending best wishes.

I broke down in front of a carer yesterday too..I just feel at the end of my tether ....its an endless cycle...pain...morphine....sleep.  wake.. repeat....everyone says .. your doing a great thing for your Mam...but it doesn't feel like it,  and she doesn't show it , so I really don't know that I am... but it was her wish to stay at home.

If we could get her pain better under control it might make things easier...she is getting a pressure sore on her bottom and has all over body pain and not just in her tumor area, so moving her is difficult and getting her off the pressure sore area for more than a few minutes is impossible.

She hasn't eaten for a few days and barely drinks anymore and I have notice her arms and legs are a bit swollen.

District nurse is coming today, but to be honest that service has not proven to be very helpful to me yet.

Aww, I know, it really is difficult. You will be doing a great job, I'm sure. I'm sure your mum will appreciate it too, even though she maybe can't show it. 

It can be really challenging trying to move them, I totally understand. My mum is also at home but we have been given a hospital bed so we can move parts of it up and down. The nurses have also suggested glide sheets which should help with turning mum on to a different side to get more comfortable. Perhaps you could request them too if you don't have them already.

Yes, if your mum's pain could be better under control that would be great. I hope the district nurse is able to help with that. Maybe the doctor could review things.

My mum is on steroids to help with any pain but they are constipating so she's had to have a couple of suppositories to help her. My mum's legs and ankles are also swollen, although her arms seem to be getting thinner evey day. 

I know how tough it is and hope you're doing ok today.

Yesterday was better  thanks...the patches appear to have kicked in and so she is not having much short tec at all, which is good as she hates taking it and I hate to give her it on a stomach that has been empty for many days now., that can't be good! 

Who knows what today will bring. As you never do do you.

We have had the profiling bed and glide sheets for 2 months, but my Mam actually finds it very uncomfortable,  even with the air mattress, due to the fact she has become very thin and boney, so against the advice and guidance of the DN I have put a folded duvet between the mattress and glide sheet to give her a bit of comfort.

Hope your doing OK?

I'm glad to hear that. If the patches are making a difference that's great. 

I hope today went ok for you both?

I think you done the right thing putting a duvet between the mattress and glide sheet to make it more comfortable for your mum. 

I'm doing ok thanks but have had a few tears. It's really difficult watching mum so weak and deteriorating. I spent last night with my partner as it was his birthday. We don't live together so had to travel to see him. We had an Indian takeaway which was nice. I felt guilty for leaving mum but a Marie Curie nurse spent the night with her. I would normally spend more time with my partner but I came back earlier today to be with mum. I've just got her into bed and making something for my dinner. I think I should stay every night now.

How are you doing?

I didn't know  that Marie curie did that kind of  service...I have only cried twice today in front of relatives.. so not bad....the evening care visit was an RN tonight and said that my Mam's pain meds need reviewed as she doesn't need to be having any pain or taking something she hates the taste of.. I e short tec...so its time to look at a stronger patch or syringe driver...which will be a relief ...she said its inhumane that this has not been sorted sooner, which is what I have been saying...so feeling very guilty I have not been more forceful ...

That's good you got a night sort of off.. although you can never switch off really can you.

Does your mum live alone? 

Yes the Marie Curie service of having someone stay overnight is something the district nurses and the MacMillan nurse made us aware of. We have used it twice now which has helped give me a little break but I do still feel guilty. It might be helpful for you too. The lady we've had has been good & she stays from 10pm to 7am. 

Aww, it's upsetting talking about it to people isn't it. Although sometimes having a little cry is what we need. It helps in some way to get it out.

Hopefully your mum's pain meds can be reviewed soon and it will make things much easier. My mum is now receiving some stuff through a syringe driver as she was finding it difficult to take lots of pills. I think it's natural to feel guilty, I've been in similar situations where I wish I had been more forceful but that comes with the benefit of hindsight. Don't be too hard on yourself. We put put our trust in the medical professionals to do what's best.

Thanks. It was nice to have a little break but yes you're right, can never really switch off. I was thinking about mum a lot.

Yes she lives alone but my sister stays close by which is handy. There is always one of us here now. I stay 30 minutes away. I get a better night's sleep at my own house but think I might have to be here every night now. Mum says she feels more relaxed when I'm here.

Does your mum live alone too? Do you have support?

I live with my Mam at the moment,  my dad is here but has not got involved in her care at all. I have 2 carer visits a day and 3 block visits a week and lots of moral support from friends and family.

Due to mam not being able to speak hardly at all I have slept in the same room as her the last 2 months, and before that too as she was getting wobbly and I didn't like her getting up to the loo in the night without me keeping an eye on her.

I can't sleep much either in the room with her or out of it and in my own bed when I get the chance of a waking night nurse, which Is rare, from the local charity that provides the carers.

Waiting on the DN just now as she has been very breathless and in pain dispite the patch and Short tec top ups.

I think the syringe driver is the next option, but mam and I didn't like the sound of it and associated it with imminent death tbh, but have since learned that that's not the case. 

I have a hospital appointment that will see me out all of Tuesday but I'm scared to leave her dispite having organised family and a sitter to stay with her with this pain  ot being under control. 

But at the same time really want to go to my procedure as I got an urgent referral for it and don't want to put it off.

It sounds like you're doing a great job of taking care of her. I know how difficult it can be but I'm glad to hear you have friends and family for support, that's great.

Ah ok. We're going through a similar situation just now. Mum is very wobbly on her feet. She's unable to walk to the bathroom so has been using a comode. If she needs the loo, I put the comode beside the bed but I still need to help her up & down. She can barely stand long enough to get wiped. I think she may have to get a catheter fitted soon. There's also been some discussion about her going into hospice, she seems to think the time is right. I fear she only has a few days left. She's hardly got the energy to talk. Certain medication is causing drowsiness so that plays a part. We've had no carers at all so far but we do get a daily visit from a DN. The Dr and MacMillan nurse have been out once/twice a week.

I've slept in the same room as mum & also in the livingroom but I don't sleep great in either. I've slept in the livingroom for the past 2 nights but hardly got any sleep. I need to help mum every hour or two.

I'm sorry to hear that. Hopefully the syringe driver will help. I hope they can administer whatever they need to to take the pain away for her. 

I understand why you'd want to go to your appointment on Tuesday but are scared to leave, even with family & a sitter there. Hopefully the pain is under control by then. Fingers crossed! At least she won't be alone and you will be back afterwards.