Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

My DM is dying. Can I have a handhold please?

78 replies

vipersnest1 · 06/01/2023 21:06

It's very, very long as it's a bit of a brain dump, but it gives the story of what happened (and so as not to drip feed), so thanks for reading:

Just that. It was inevitable, really, but hard to deal with all the same.
She's 80, very frail and has emphysema.
She went into hospital on New Year's Eve with what we both thought was an exacerbation of her emphysema, this time being different as she was so weak she couldn't get out of bed. It turned out she has flu.

All along, I've had phone calls about packages of care, including today.
I've been visiting every other day on work days, and at weekends, meanwhile calling every day to see how she's doing. (No mobile signal where she is so I couldn't phone her directly.)

I last saw her on Wednesday, when she was up and out of bed, but very anxious as she felt she couldn't breathe, but her SATs were ok, so I put it down to a panic attack as she had one the previous evening (I only found this out when I was visiting.) She did also tell me the doctor had told her 'she was on her way out', meaning that she was dying. As she has emphysema I didn't read too much into this - as no one had spoken to me about it I assumed it was about the progression of her emphysema, but I did call and ask to speak to her doctor. As you can guess, the doctor didn't call me yesterday.

When I called the ward yesterday I was told she was settled and comfortable. (I took this to mean she was less anxious and doing ok.)

Today I got a call about her discharge, with the nurse asking questions about the care she currently has, and about her oxygen level she uses when at home. The nurse did mention that she has pneumonia, which I was surprised by. I told her I was expecting a call from the doctor and the nurse said she would make sure I got one.

I got the call just as I was arriving at the hospital. The doctor said that the treatment wasn't working and that they would try a stronger antibiotic, but if there was no response by the end of the weekend, they would put DM on 'comfort care'.

I then walked in to the side room DM is in (because of flu) to find her in bed, slightly disoriented, telling me she is dying. We spoke for a little bit about how she was and she could respond here and there.
It was obvious she had received no mouth care as her lips were caked in dried saliva. She was also thirsty so I helped her to drink a little water. I left eventually as she was distressed at the thought of making me worry and kept telling me to go home. Of course, I will go back tomorrow or earlier if anything changes.

I'm devastated.
I've always known DM would die sooner rather than later, but I had been given no forewarning that she had deteriorated so badly.

I could go on about the series of events that included poor patient care and poor communication, but I'm not here to bash the NHS.

I've had to contact my siblings who live overseas and tell them the situation, tell my DCs and also call my DM's one remaining sister who, after the loss of all but one of her sisters (my DM), is also facing losing my cousin, who has terminal cancer.

It's shit, I don't want to do this again. (I've already been through it six years ago when my DDad died of pancreatic cancer just 28 days after diagnosis.)

Sad
OP posts:
deltablue · 06/01/2023 21:08

Oh love, I am so sorry to read this and can hear your distress and anguish.

SeasonsBleatings · 06/01/2023 21:10

Sending a virtual hug and thinking if you and your family

FMLpassthegin · 06/01/2023 21:12

So sorry, it sounds very sad and distressing. I hope she can be made comfortable

RobertsRadio · 06/01/2023 21:12

So sorry to read this Op. It's so hard.

maeveiscurious · 06/01/2023 21:13

My DM passed last month, please make sure that if the end is coming she is given adequate pain relief. My thoughts are with you

TossieFleacake · 06/01/2023 21:14

I'm so sorry to read this OP.
That sounds like it was a big shock to you to see her having deteriorated so quickly.

Sending you a big hug.

vipersnest1 · 06/01/2023 21:16

Thank you all for the thoughts.
@maeveiscurious, as soon as it's appropriate (in the next day or two I think), I'll ask for a syringe driver to be put into place. I don't want my mum to be distressed. She's had enough of that with struggling to breathe so much over the last couple of years.

OP posts:
Diversion · 06/01/2023 21:19

I am so sorry and yes it is shit. I lost my Mum a few weeks ago. It really doesnt make any difference if it is expected or unexpected, it is just truly awful. Thinking of you and sending strength.

TheOtherBoleynGirls · 06/01/2023 21:20

I’m sorry. Just a handhold and thoughts for you over the next few days x

LotteryWinPlease · 06/01/2023 21:20

❤️

Teafor1please · 06/01/2023 21:22

It's shit isn't it. I'm so sorry that you've done this before with your dad. Thinking of you.

Motheranddaughtertotwo · 06/01/2023 21:28

This is so sad, my heart goes out to you. All you can do at this point is put a care plan in place. Are you able/ do you and your mum want her to be at home? It’s a lot to take. It’s difficult being the one to deal with all the calls and extended family as well. I hope you’re being kind to yourself.

Vallmo47 · 06/01/2023 21:35

I’m really sorry OP.

ToooOldForThis · 06/01/2023 21:38

So sorry to hear this. Going through similar with my dad right now although he is at home. Not sure how long he has.

Geamhradh · 06/01/2023 21:42

So sorry, it sounds awful. Sending you strength. You too @ToooOldForThis

vipersnest1 · 06/01/2023 22:55

@ToooOldForThis, I'm sorry you are having the same experience too. As miserable as I feel, my heart goes out to you. Flowers

I can only wait and wonder what is going on for my DM. I have now been given an extension number that staff will answer (as opposed to the direct number which just rings and rings, and then my phone cuts the call). I'll ring again shortly to get any updates before I go to bed.

My siblings are seeing what they can do to travel back to see her. One of them had us a serious fall recently involving a joint replacement plus another broken limb, so they are dealing with being certified fit to fly...

OP posts:
ToooOldForThis · 06/01/2023 22:59

Thank you! It's very tough. It sounds like your DM is still talking to you a bit? Which is lovely. My dad is talking less and less, he's just sleeping most of the time now. He seems comfortable but I'm always worried that he's not.

determinedtomakethiswork · 06/01/2023 23:03

What a horrible time for you all. I really feel for you. This time is coming towards me and my family and I'm absolutely dreading it. Take care of yourselves 💐

vipersnest1 · 06/01/2023 23:05

@ToooOldForThis, yes she is currently.
She has no stridor yet, which can be an indicator that death is near. My Dad certainly had it in his last 48 hours.
Don't worry that your dad is uncomfortable - even though he is asleep most of the time, he would become agitated if something was bothering him, so you will know.
I'm not saying you should do the same, but my plan is to get a syringe driver put into place when my DM seems more likely to die. We did that for my Dad and it meant his passing away was peaceful for him.

OP posts:
thaisweetchill · 06/01/2023 23:06

I'm so sorry you're going through this. I hope you can make her comfortable in her last days. Flowers

AtSomePointInLife · 06/01/2023 23:17

I'm very sorry OP I hope your ok. Take care of yourself. Sending lots of love Flowers

vipersnest1 · 07/01/2023 12:30

Not much of an update - mum is much the same.
I do wish the staff wouldn't sugar-coat why they say though. I know they're keeping her comfortable but telling me she's a bit unwell when I'm fully aware of the situation isn't helpful at all.
I'm going to see her later. My siblings are trying to find a way to get here.

OP posts:
vipersnest1 · 07/01/2023 17:25

Another brain dump.
I saw my mum and she is now incredibly weak. She is using her energy up just breathing. She understood what I was saying but was only able to say a few words here and there.
I'm just hoping that my siblings get here in time.

OP posts:
ToooOldForThis · 07/01/2023 17:42

So sorry to hear that. Are your family on their way? She'll know you're there

vipersnest1 · 07/01/2023 19:32

@ToooOldForThis, yes, she knew it was me - I asked her did she know who I was and she was able to say my name.
She also knows my siblings are on their way to see her (tomorrow late afternoon hopefully).
At that point we are going to ask her if she wants a syringe driver put in place - as long as she can still understand us. Sad

OP posts: