Horrendous few days

[angecmc]

My poor Mum, I have been trying for ages to get the dr to put her on proper end of life so that she would have access to Morphine etc. He kept insisting she wasn't there and wanted to try other medications to calm her, which didn't work. , Wednesday she was in a real state, she was distressed and agitated and screaming out, The Care home asked for dr to call, they were reluctant and gave advice over phone, by Friday Mum was almost climbing the walls, so I called the surgery myself and insisted they come out and give her something. They finally came out and prescribed codeine agreeing she was in pain but oh no she's not end of life! Early hours Saturday morning I was called to care home as they felt death was imminent due to breathing changes. When I got there, it was horrific to watch her struggling and still screaming, nothing I did could calm her I stayed from 2am till 7 am had to go for a break, felt heartbroken and exhausted. I went back with my dad at 9 and nothing had changed, poor Dad was in bits. I spoke to the manager on duty downstairs, she said Don't worry, I've seen what's been happening , she called 111 and insisted they send a dr out to assess for end of life, she had to argue with them, eventually dr came at 9.45pm took one look at Mum and said this is end of life, prescribed morphine injections and a driver if needed. Thankfully now my Mum is more relaxed and hopefully will get the peaceful ending she deserves. I've been there all day, just home for a break, going back at 6, really hope now the end comes swiftly.

 

[Selinacroft]

Wishing you all a peacful night and hope mum is more comfortable . Such a difficult time- mum is lucky to have you fighting for her.

 

[Shedrech]

oh angecmc
just awful for your mum, your dad and you
well done for your tenacity, thank goodness the manager stepped in and blessings on the out of hours GP

wishing peace for your mum
strength and comfort to you and your dad

 

[marionq]

Why do some doctors resist this so much? It must be torture to watch your mother suffering like this. My thoughts are with you.

 

[Amethyst59]

You poor things...and how lovely that your mum has you fighting her corner. In times to come, it will be such a comfort to you that you did this for your mum. Bless you all.

 

[lemonjuice]

My poor Mum, I have been trying for ages to get the dr to put her on proper end of life so that she would have access to Morphine etc. He kept insisting she wasn't there and wanted to try other medications to calm her, which didn't work. , Wednesday she was in a real state, she was distressed and agitated and screaming out, The Care home asked for dr to call, they were reluctant and gave advice over phone, by Friday Mum was almost climbing the walls, so I called the surgery myself and insisted they come out and give her something. They finally came out and prescribed codeine agreeing she was in pain but oh no she's not end of life! Early hours Saturday morning I was called to care home as they felt death was imminent due to breathing changes. When I got there, it was horrific to watch her struggling and still screaming, nothing I did could calm her I stayed from 2am till 7 am had to go for a break, felt heartbroken and exhausted. I went back with my dad at 9 and nothing had changed, poor Dad was in bits. I spoke to the manager on duty downstairs, she said Don't worry, I've seen what's been happening , she called 111 and insisted they send a dr out to assess for end of life, she had to argue with them, eventually dr came at 9.45pm took one look at Mum and said this is end of life, prescribed morphine injections and a driver if needed. Thankfully now my Mum is more relaxed and hopefully will get the peaceful ending she deserves. I've been there all day, just home for a break, going back at 6, really hope now the end comes swiftly.

Your post makes me so sad. Why do Drs think that somehow 'preserving life at all costs' is so desirable? Especially when someone is in obvious pain?
I dread this will be my mother's eventual demise. At the moment she is so non-responsive that we have little idea whether she is in pain or not and I'm hoping against hope that this wll not happen to her. She's already undergone so much.

 

[Loopiloo]

How horrific for your Mum and you and your Dad to see her suffer like that. Thankfully the care home manager acted, and the out of hours doctor. As for the other doctor, words fail me...

May your Mum be peaceful, and you and your Dad too now that she is I hope asleep, and may you rest, regain strength during this sad and difficult time. You did so well to persist and not be browbeaten.

My thoughts are with you
Loo xx

 

[angecmc]

Just back for another break, god I need these! It's unbelievable, apparently they are just giving oramorph because they are worried Mum may try to pull out the syringe driver, the oramorph didn't make any difference tonight, my poor Mum she is suffering so badly I had to call them to come and see tonight how bad she is we waited half an hour after the oramorph was given and nothing was changing.Mum so distressed. So they are going to call out the district nurse for advice, I am praying she tells them to try the driver, this is just torture. I was so hopeful that we had got somewhere but sadly not. Just having a cup of tea then heading back. Thank you for all your kind messages xx

Ange

 

[angecmc]

Thanks Kassy, I just had a call from Care home, it turns out the medication wasn't oramorph it was the codeine and yet I had asked when it was given and a
Was told it was morphine! Anyway district Nurse has been and has injected morphine and Midazolam, so going back now, hopefully things will now improve. In fairness the care staff are really lovely, that's the first time I have been given incorrect information and they are really good with Mum, in that way I am very lucky. Just want Mum to have some peace, hope it works like it did for your dear Mum xx

Ange

 

[cragmaid]

Ange, I'm so sorry that you are having to devote this last bit of time with Mum, organizing the Medical Services. I hope, now that the weekend is over, the District Nurses will be able to keep a closer eye on the situation and that you can concentrate on your time. Thinking of you with a hug.x.x

 

[canary]

I am so sorry for this upset.
When mum was in her final stages the district nurses injected her with Midazolam and morphine which settled her down and then they were able to use a syringe driver without worrying that she would pull it out. This meant that her passing was peaceful. I do hope the same thing happens to your mum.

 

[angecmc]

Thank you all for your support, I am back for another break, the midazolam and morphine injections worked, Mum peaceful all night, I am going back at 7pm for a few hours unless they call me back, need to do household chores for mine and dads household it's been neglected and all we had to eat was soup and bananas. When I was with Mum this morning,she was sleeping still, breathing still I would say Cheyne stokes, I could also here a rattle every now and again. Apparently at the moment the district nurse only comes out if Care home call her, that's why I'm going back at 7 if mum is like she was last night, I will get them to call district nurse and I will wait to see her myself and will ask about the driver as she is definitely not pulling at anything now that she is settled, so that shouldnt be an issue. My advise to anyone now looking for a care home for their person with dementia, look for a nursing home, as at least you have someone on site qualified to give all medications, wish I had thought of that 4 years ago, but hey ho I hope this doesn't go on much longer. Going for a few hours sleep if I can now. Thanks again to all you wonderful people xx

Ange

 

[Winky1973]

Hi Ange

Had to respond and send you some moral support.

Just been through end of life with my Mum. I was very fortunate in that everyone was one step ahead of me (for once) and all was in place for a peaceful and extremely dignified ending.

You are doing the right thing by banging your drum loudly. You sound like me!!

Having said as much, it's just the time when you really don't want to be doing that...grrrr. Hopefully if the DNs stay involved you will be heard. They seem a pretty good bunch and definitely want a calm, peaceful patient and a happy daughter (as much as you can be).

I back up your advice to others. Check what the care home are allowed to do and if they have specific end of life training. Especially when final stages start to set in.

Mum's did and they (along with the GPs) were wonderful. She looked lovely right up until the end and their support to me was fantastic.

Much love and feel free to PM if I can help further.

Sarah x