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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:
vipersnest1 · 07/01/2023 19:33

@ToooOldForThis, posted before I realised I wanted to ask you:
How are things for you? (I'm sending a virtual hug as this is a horrible situation to be in.)

OP posts:
ToooOldForThis · 07/01/2023 22:59

Oh I'm so glad she knows you're there. I'm not sure my dad does any more...his eyes are very cloudy and his speech has gone. He's still taking tiny bits to eat and drink, but sleeping other than that. I'm sure the end can't be far away but not knowing is really hard.

vipersnest1 · 08/01/2023 10:56

@ToooOldForThis, my siblings should be arriving this afternoon, so she will get one of the wishes she has had for a long time - seeing us all together.
The hospital has now out a syringe driver in place as she needed it, but it hasn't affected her level of awareness.
I'm thinking of you too. Look after yourself. Flowers

OP posts:
rainbowstardrops · 08/01/2023 11:10

Oh I'm so sorry @vipersnest1
I do hope your siblings arrive in time and that your mum's wish for you all to be together can happen. Take care Flowers

ivykaty44 · 08/01/2023 11:15

so hard for you, hoping you can get your mum a peaceful death and that your siblings make it. It's of course very possible that your mum is holding on until their arrival to see them and say goodbye.

boatahoy · 08/01/2023 11:15

Aw OP I'm so sorry to hear you are going through this. It's such a difficult time, I have recently been in your position and my heart goes out to you.

vipersnest1 · 08/01/2023 11:44

@ivykaty44, I think so too. I hope after that she will be able to relax and go if she's ready, which I know she is.
I was really torn about telling her - she's been telling me to go home so I'm not worried about her.

OP posts:
vipersnest1 · 08/01/2023 11:45

I've just realised I've been very ungrateful.
Thank you to everyone for your kind words and thoughts.

OP posts:
ToooOldForThis · 08/01/2023 13:45

You are doing so well, I'm glad your siblings will be there soon. Maybe she's just waiting until you're all together. Take careFlowers

vipersnest1 · 08/01/2023 21:45

@ToooOldForThis, sorry for the late post. We all went to visit DM and will do so again tomorrow.
She is even weaker than yesterday and has been vomiting after drinks, so only given sips now to keep her hydrated as much as possible. She has a slight sedative and an anti-emetic in her driver to keep her comfortable, but I think more meds will be added as time goes on, depending on what she needs.
She knew we were all there, definitely, which was lovely and when I asked her was it nice for us all to be there she nodded.
She eventually went off to sleep, so we said our goodbyes for now. We asked the staff to tell her that we will be back and that we left her to rest.
One sibling is a nurse, and as I expected, in their opinion she doesn't have long left.

OP posts:
gogohmm · 08/01/2023 21:59

It's bitter sweet but take comfort in being together for these last days. Thinking of you Flowers

babbi · 08/01/2023 22:56

I’m so sorry OP.
Take care

Badgerstmary · 08/01/2023 22:58

Op I’m so sorry. I understand how difficult this is for you. I hope you have someone who can help look after you too. Xx

vipersnest1 · 08/01/2023 23:15

@Badgerstmary, for the time being, my siblings and I are looking after each other, so that's ok.
@gogohmm, bittersweet is a very appropriate word. My DM recently said that she thought that she would have all her family around her in her old age. Now she has that wish. I'm so pleased about that as I know it was a good thing for her.
@babbi, thank you.
@ToooOldForThis, how are things for you? I'm thinking of you, especially as you haven't been here for a while and I suspect that things are 'moving on' for you. If that's the case, I hope things were as peaceful as they can be. You're in my thoughts.

OP posts:
vipersnest1 · 08/01/2023 23:20

Oh and @ToooOldForThis, sorry to tag you again, I suspect DM was waiting for us all to be there, and I've had to warn one of my siblings (who is less aware of the processes of death), that she might decide that now she's seen us all, she can go peacefully, in privacy, without people there.
I hope she goes when she feels ready (and I think she does), whether that is with or without us. She has struggled to carry on living for long enough.

OP posts:
nocoolnamesleft · 08/01/2023 23:48

I am so glad your siblings got there in time. It must mean so much to your mum. Hand hold.

DutifulDaughterWifeMother · 09/01/2023 00:02

Op I am so sorry , please take comfort that you were altogether & your mothers wish was fulfilled. You and your family are in my thoughts and prayers xx

rainbowstardrops · 09/01/2023 05:04

I'm so glad your siblings arrived in time. I do hope your mum is peaceful and pain free Flowers

PermanentTemporary · 09/01/2023 05:38

My best wishes to you all.

ToooOldForThis · 09/01/2023 17:17

So glad they arrived.
Dad still with us, although very very sleepy. Just wish I knew how and when it was going to happen.

Summer2424 · 09/01/2023 17:21

@vipersnest1 so sorry you're going through this 😔💐❤
Sending you hugs and strength to get through this difficult time x

IntoTheDeepDark · 09/01/2023 17:41

Sending my thoughts.💐

vipersnest1 · 09/01/2023 21:00

Thank you everyone. DM is still here, and declining slowly but surely.
@ToooOldForThis, that's what is so difficult - the not knowing, isn't it?

OP posts:
vipersnest1 · 09/01/2023 21:01

Thank you everyone. DM is still here, and declining slowly but surely.
@ToooOldForThis, that's what is so difficult - the not knowing, isn't it?

OP posts:
vipersnest1 · 09/01/2023 21:02

Thank you everyone. DM is still here, and declining slowly but surely.
@ToooOldForThis, that's what is so difficult - the not knowing, isn't it?

OP posts:
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