Can I ... Should I?

[Sam Luvit]

[Hi @Toony Oony

I have a bottle in the fridge (I use it as a facial cool down when it’s a bit hot!!). I will try it out later. Thank you. Nothing wrong with brainstorming

 

[canary]

Yes @Slugsta I remember about your mum. My mum was pretty similar, going 17 days without food/fluid. She, like Sams mum, felt very neuseaous. In mums case, though she was up, dressed and sitting in the lounge until 3 days before she passed away. I have a photo of her mum with her great grandson banging spoons on the table and both of them were laughing their heads off. It was taken on day 13. No-one looking at it would know that she was actively dying. I stayed with mum constantly (sleeping on the floor next to mums bed) for 48 hours, then I had to go and check on OH. I told mum that I had wanted to be with her to the very end, but I had to go and check on OH. I kissed her and said I would be back soon, but she passed away withing 10 mins of me going. Im sure she waited until I had gone.

Can you not sleep in the lounge during the day Sam?

 

[Slugsta]

Sam, you can see from my story, and Canary's, that this can drag on for some time. Please try to snatch some sleep whenever you can, otherwise you will find yourself simply unable to keep going, no matter how much you want to.

 

[love.dad.but..]

Afternoon @love.dad.but..

Although Mum was very awake early this morning, by the time the Carer got her back into bed, she was exhausted & has pretty much slept since then. Not awake enough for any meds. Tiny bits of water from the syringe (couldn’t suck at all). She’s sleeping with one eye slit open. It’s pretty disconcerting to see

She wakes for 20 seconds, desperately looking around, sees me, relaxes & sleeps.

Anyone planning on doing this Hospise at Home ... try to make sure there are at least 3 of you, it’s emotionally & physically draining

You have to be referred by a health professional such as the DN...had you thought about asking about Marie Curie...a friend had a nurse who came overnight for 3 consecutive nights until her OH end of life.

It must be difficult if your mum is asleep when meds are due and a balance between letting someone sleep as that perhaps indicates they are not in pain but I found with dad equally important to keep all the meds topped up to try to avoid gaps in pain relief. With my agreement and their experienced guidance the nurses either woke dad or injected anyway which obviously caused him to wake but we felt effective pain management was more important for his comfort. Would your mum consider a hospice saying just for a few days to make her more comfortable? Does she have any savings to fund a nurse for a few nights if not Marie Curie? Sorry...I know questions that may not give you any immediate answers just trying to think of something that may help. If she is sleeping more..and if she is pain free sleeping will increase ...sleep or rest yourself ... end of life shutting down can go on for quite a while as I.. Canary...Slugsta and others can tell you

 

[Sam Luvit]

Hi @Baby Bunty

Ok. Can’t see Mum tolerating that. Although I think they need to start doing what is best, not what she wants.

I’m trying to get hold of the DN ..... I’m getting less & less patient with this waiting around.

 

[canary]

Re the syringe driver - its only really practical once they are bed-bound. Mum wasnt put on one until she became semi-unconscious. Until then she was given injections

 

[rainbowcat]

Is she not able to have or allowed to have a drip for intra-venous fluids? Because if she's thirsty but can't drink, the dehydration is going to be very painful for her as well. I know my mother was kept on a drip much of the time during end of life, with regular mouth care etc, until the very final 24 hours when she was fitted with the syringe driver.

Is a drip a possibility?

 

[Prudence9]

I must admit Sam I'm slightly disturbed that the palliative team aren't more proactive about your Mum's medication and the GP should be out to her whenever he/she is needed - she's entitled to home visits.
This isn't the service we had...
You won't be feeling up to the fight either.
Yes, it's so tiring, three people would be ideal. My Mum was 10 days but for about the first 8, she was very peaceful overnight and those times were so precious. I would carefully push the bed down alongside the settee (two seater, bit of a squash but luckily I can sleep on a washing line!), when my siblings and nephew had gone home to rest. I was right next to her and woke at times through the night to check that she was still with me.
The last couple of nights the four of us were with Mum 24/7 and cobbled together a two-on, two-off type rota where we slept 3 hours each pair overnight.

Your little Pooch sounds such a sensitive, lovely dog, I could just imagine him gently pulling your Mum's throw back to retrieve his toy. I hope he's giving you some cuddles.

Please try to snooze in the room with your Mum while she sleeps if you can, you will be so weary now. Even if you can just put your feet up and rest your body.

Don't forget, those DNs are there to be called through the night if you're at all concerned about anything, we were told that it may take them up to a couple of hours to get to us but that they definitely would and not to hesitate to call.

Nagging done, here come the ((((HUGS)))), love and strength-willing thoughts XXXXXXXX

 

[Amy in the US]

Sam, more (((((((((((HUGS)))))))))) for you all.

No, no, I wasn't worried from something you said, that I'd upset you, just generally concerned. No need for you to apologize. Mea culpa!!!

I hope you get the help and support you need.

 

[Sam Luvit]

Afternoon @rosy18

Yesterday was not a good day. It felt like everyone was coming, but they all took so long to get here. All the waiting while mums getting herself out of bed & I'm running around trying to even get to the loo without her risking a fall.

I FB’d a request & my boss bought one round, bless him. I’ve ordered one, someone kindly did the research & sent me a link, delivery tomorrow. I can pass it in to youngest as they are expecting at the end of December. I don’t know who suggested a baby monitor, but thank you

Hugs always welcome, never have too many

We started the day with Mum conning me into leaving the water beaker near her & she drank the lot .... vomiting followed. She’s barely been awake since then, not asked for the loo & only woken enough to take a few sips of water, by syringe as she can’t suck This means, she’s had no meds at all so no pain relief

Can’t find the DN number, tried on line search. Phoned & told not them, but gave me another. Tried GP, closed for lunch. Tried GP “after lunch” , they can’t help as they don’t have the DN’s diary Useless, just useless.

Meanwhile, mums had a visitor, caught up on local gossip & asleep within 20 minutes.

Pooch definately wants to look after Mum. He is so upset. Every now & then he gets his teddy & walks around crying. He can’t understand why I’m not making mummy better.

Some time later ......

DN been. Yay. Wants to know when GP did review. Lol. Is she having a laugh. He refused to come out. While she was here, got Mum to have oramorph & 4ml of water. Mum promptly vomited

DN on her way to surgery to speak to GP. She wants mums meds changed. Don’t fancy his chances against her

 

[Sam Luvit]

Hi @Slugsta

The DN has discussed the syringe driver, but doesn’t want to go that route yet. I do think it wouId be more helpful to everyone if the same DN came each time. I’ve yet to see one of them twice. Mum knows what it is (she wouId) & was pretty adamant she’s not having that

I do talk to Mum about going with dad, about not worrying about us, about how I’ll look after everyone, I talk in the middle of the night, when she’s at her most anxious, I tell her not to worry. I tell her she doesn’t need to fight.

Although Mum is eating 2 or 3 teaspoons of food & minimal water, she’s also vomiting most back up. She is, however, one stubborn proud lady & she’s forcing herself to keep doing. I almost wish she’d stop altogether, as it feels she’s prolonging the inevitable, while enduring more pain

I’m grateful for the hugs, I really need the comfort, thank you

 

[canary]

Is she not able to have or allowed to have a drip for intra-venous fluids? Because if she's thirsty but can't drink, the dehydration is going to be very painful for her as well. I know my mother was kept on a drip much of the time during end of life, with regular mouth care etc, until the very final 24 hours when she was fitted with the syringe driver.

Is a drip a possibility?

IV fliuds can really only be administered in a hospital - even nursing homes very seldom monitor them. They certainly cant be done at home.

Sam, Im wondering whether your mum is actually forcing herself to drink because she knows that not eating and drinking is a sign of the end. What with her rejecting pain killers (not to mention the syringe driver) I think she is fighting it every step of the way.

 

[rosy18]

Sam I'm feeling so annoyed I could cry with frustration for you. You really shouldn't have to be chasing the medics at this stage they should be coming to check on your Mum regularly surely. I don't know if you have them near you but I also have a rapid response number that I can ring anytime day or night and it is lovely nurses who come so quickly I've had them for Mum on a few occasions. You really don't seem to be getting the proper support you are entitled to which is making it much harder for you both. Your GP sound horrendous I hope your DN tells him to pull his socks up if I said what I really wanted to it would be deleated
I just feel so helpless wishing I could could give you some help so you could catch a few hours sleep,
Thinking of you and your Mum and praying the medics get their ac t together.
Loads more ( ((( hugs)))) and much love to you both xx

 

[Sam Luvit]

Hi @love.dad.but..

The Hospice did one nights sitting, I’m one of many asking for it though. They told me, Mum is now NHS funded & I'm entitled to up to 3 nights a week as Mum is End if Life. One of the DN’s last week said she wouId refer me, but today’s DN said rules change, but she will ask

Mum woke enough to sip water, but not enough to take anything else. She was swallowing the water & closing her eyes again. I didn’t dare try oramorph when she wouldn't wake enough to take half that amount in water. I want her pain free, or at least comfortable but I didn’t feel safe giving her much else.

Last night, Hospice said, when I asked, days, couid be a week, possibly two, or a couple of days. Both brother & I think days.

I’ve phoned my ASC Liaison & asked for clarity. Hospice are saying very soon. DN are saying now NHS funded. Hospice said Mum is CHC funded, but ASC say no she’s not, no one has applied???

Im starting to think they are all thinking someone else has sorted it & not done anything. No night sitter unless NHS funded. I could pay privately but .. ouch ... that sure costs.

 

[love.dad.but..]

That's true but the gain for you in getting proper rest for one or two nights is maybe worth considering even though obviously you shouldn't have to. Perhaps now is the time to tell DN GP etc...that if your mum lived alone she would be in hospital or hospice now as a vulnerable end of life adult needing medical expertise and care....and you need more support urgently put in place regardless of funding issues they have...and things like your worry which is absolutely understandable about giving her water/oramorph should not be left to you as willing as you are to have to deal with and make those decisions as a loving daughter but not a medic.

Dad could not have a syringe driver but he had nurses 24 hours to inject instead. His lack of understanding was more advanced than your mum's so it must be tricky to handle

 

[rainbowcat]

IV fliuds can really only be administered in a hospital - even nursing homes very seldom monitor them. They certainly cant be done at home.

Ah I didn't realise that. Thank you

 

[Amy in the US]

Sam, I am sure the chocolate teapot GP stands no chance against the DN. At least, I hope so.

Here are more ((((((((((HUGS)))))))))) for you all.

I am THIS CLOSE to getting on a plane and coming to help you, myself. I hope more help and support shows up soon.

 

[2jays]

[QUOTE

I am THIS CLOSE to getting on a plane and coming to help you, myself. I hope more help and support shows up soon.[/QUOTE]

Now the building work is finished and granlings are healthy... let alone 1jay....
Just say the word,

no! No need to say the word.... just pm me with your address and before you know it, I’m squishing you tight and it won’t be virtual

 

[Shedrech]

hi @Sam Luvit
ask your GP for an urgent referral to Marie Curie nurses, they are there to support everyone
https://www.mariecurie.org.uk/help/nursing-services
maybe call their helpline tomorrow

 

[Sam Luvit]

Yes @Slugsta Can you not sleep in the lounge during the day Sam?

Mum is in the lounge, so I’ve been in there, stretching out on the recliner, but she’s so fidgety & wakes up every 10 minutes with another question, that I’ve not managed to sleep at all this last week. Going outside or upstairs, means she goes looking for me “sigh”