Poor Piedsmum is poorly again.

[Izzy]

Good morning Pied.

Your mum sounds very much lie my mum was towards the end. She wouldn't eat at all though. She was at home with us andcwecdidn't fire anything. Ice cream was the last thing she ate. Eventually she wouldn't even sip liquids and a soaked sponge was used to wet her lips and get a tiny but of liquid in. I'm not sure if the LP issued here but it sounds very like what happened with her. She had a syringe driver with morphine in it and the GP told us that once this was fitted she would gradually close down. This is what happened.

Thinking if you and your poor mum today. x

 

[piedwarbler]

They don't use a driver here just injections of morphine but they won't start those til mum appears in pain. I think she's distressed but they disagree.
I guess they think she will refuse food when she is ready and I just hope she remembers that she can. I really do think its automatic for her to open when she sees a spoon coming. She is such a pleaser. I don't think wanting the food comes into it and I don't believe she is hungry. I can only say my instinct is strong but where or why I feel like this I cannot say.
Thanks for your reply Izzy. I do remember your mum eating ice cream at the end. I've read that cold food is best but I've no idea why! X

 

[Big Effort]

Good morning Pied,

I see from the time of your post that you have been burning the midnight oil..... did you get any sleep?

I guess they think she will refuse food when she is ready

I think you have hit the nail on the head here. With Dad (who did not have dementia, but had had enough of life, so he decided), we heard him 'begging' our kind carer (we kept Dad at home) not to give him anything to eat or drink.

I suppose we need to keep that old, useful adage "Do no harm" in mind. Watch your Mum, and her distress, and once the distress is clear, perhaps it is possible to move on to the point of just offering sustinence and liquids, i.e. not giving. It must be difficult for CHs at times like this, trying to do what is best for patient, juggling their own moral standards, trying not to infringe on patient rights, enforce best policy and so on and on and on. Not an easy or comfortable mix. Lots of reasons for error too.

You are managing so well through all of this constant change. I am so glad you have a supportive sister, isn't she magnificent too? Thank you for the updates because I came on here specifically to see how all of you are doing.

Many blessings, may the perfect staff for your Mum be on duty today, and she is so well looked after by the two of you...... You are managing perfectly. Hugs BE

 

[jeany123]

Good morning Pied I am thinking of your mum and you and your family today,

Jeany x

 

[piedwarbler]

Morning, thanks BE and Jeany. I slept til 5. I'm sitting at Mum's side. She's fast asleep, hasn't stirred even though I've come in and rustled all my plastic bags containing my breAkfast (toast in foil and a flask) and my make up (got to look presentable for Mum).
Ill update later but thanks so much for all the hugs. Hope you have as good a day as you would wish for. X

 

[DeborahBlythe]

Pied, wishing you and your mum a good day. xx

 

[Skye]

Hi Pied

John was on the LCP in hospital. They didn't give him food, but kept him hydrated with a drip. He also had a syringe driver, and his drugs cocktail was calculated and monitored by the oncology consultant, though he didn't have cancer. His treatment was excellent.

My understanding was that they couldn't use a syringe driver in a CH, even though there was always a nurse on duty. But as Izzy's mum had one at home, perhaps that wasn't right, or perhaps things have changed. Worth asking though.

Love and hugs,

 

[piedwarbler]

Thanks Hazel. I did ask about a driver and they said they don't need one. Although a few weeks ago they said they could get one written up if they needed one.
Mum is still very peacefully sleeping. It's such a pity they are going to come in and disturb her. I know they have to.

 

[grove]

NOT ABLE TO HELP ........ Sorry

Morning Pied , Have just read your reply from me Pied ( food & your Mum on the L C P ) & am sorry as I work in the Kitchen & not a Carer I was not aware of which Resident was put on the L C P ( or even if it was used or not ) How ever when a Resident was very , very poorly the Nurse in Charge or a Carer would tell me not too make Tea for Mrs Z ( am not sure but think the G P wrote out a Prescription for Fortisip etc & hot drinks were offered & good Mouth Care )

Sorry Pied not much help really but thought when the L C P is used the Next of Kin have some say in the Care / Treatment of their Loved Ones ? Sorry if spoken out of turn Pied with that comment


Sending much Love , Peace & Comfort to you & your dear Mum


Take care & much Love & Hugs Love Grove x x



P S Hope that helps a little Pied in what you asked me

 

[Izzy]

Mum had a driver because she was in pain. It was difficult to know where the pain was but she was clearly distressed and calling out in pain. They also left a 'just in case' box in the house. I now don't recall what was in it other than an injection for break through pain. It meant that the Marie Cure nurse or the district nurse could administer this overnight without getting a doctor to come. It seems that this was the usual practice for terminally ill patients. She didn't have cancer but was treated in a similar way to cancer sufferers.

 

[Skye]

Pied, I've just had another thought. John was in severe pain and discomfort right from when he aspirated. It sounds as if your mum is relatively comfortable, so the two situations are not the same.

Sorry if I worried you.

xxxxx

 

[Izzy]

That sounds the same as with my mum Hazel/Pied. She was distressed and in obvious pain.

Take care Pied. X

 

[Grannie G]

I hope your mum continues to sleep peacefully Pied and will not be in need of a driver. xx

 

[jan.s]

Thinking of you Pied, and of course your mum too. I hope she stays peaceful. xx

 

[Butter]

I hope she continues in peace and comfort.

Don't be afraid to trust your instincts. I had to be very loud and firm and repetitive until I was sure my mother was comfortable last year. I asked for morphine for her. And the palliative care nurses got involved. Carehomes are conservative about pain relief - they are afraid of being accused of shortening people's lives.

I was loud to the GP, to the CH manager and to all the staff - and all in front of each other so they all knew that each other knew. I nearly shouted. And this was in front of my mother - she needed to know that I knew she was in pain and I was getting her some help.

It is so good you are able to be with her so much.

 

[Saffie]

I am glad that your mother is sleeping peacefully, Pied and I hope she remains peaceful, come what may. That will be such a blessing and will give you some peace of mind too. x

 

[piedwarbler]

All these replies are so helpful in different ways and I thank you all for taking the trouble to comfort me. I feel very surreal - why are we talking about syringe drivers?, kind of thing, Mum's not dying ... Then the carers come in and talk in hushed voices and I think , this is weird. Maybe denial is self protecting.
Anyway Mum is still asleep. The nurse got three mouthfuls of meds into mum and has left the rest with me and a pipette. I will have a go.
I do feel terrified of aspiration. They don't have aspirators here. So if Mum chokes, she's had it.
She smiled when she heard my voice this morning, but she hasn't opened her eyes.
I hope she's got that euphoria you hear about.
She's breathing at 16 breaths a minute, quite steadily. X

Oh, and guess what we are listening to. First correct reply wins a year's free membership to the Julie Andrews society. X

 

[Butter]

Syringe drivers can be wonderful. No need to whisper about them. They are used freely after surgery nowadays.



Climb every mountain?

 

[piedwarbler]

Oh Butter, I know. It's just weird. I can't believe she will ever ever die. She's like an ox. Do you know, she had a great uncle who lived to 104 - he died when I was about five or six. And her three uncles lived to a combined age of 283 and were famous in the village apparently. She must have inherited their constitution. If she hasn't had MS I'm quite sure she'd be trotting round helping me!

Actually, it's Favourite Things just now! X. But you win the prize. Congratulations. Xx

 

[Dazmum]

Thinking of you and your little mum Pied. Those late night phone calls from the home about my dad, used to nearly finish me off, heart pounding and hands and legs shaking... people don't think if they haven't been in that situation

Your mum sounds very peaceful and it's lovely that she knows you are there and that you love her so much xxxxx

I was going to say Sound of Music, but as Butter has chosen the most likely one, I'll say...the Hills are Alive?

Oh, I x posted, so not only too late, but wrong as well!!