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Life-limiting illness

Mum scared of dying

25 replies

FromLittleAcornsGrow · 10/09/2023 23:29

I don’t know if this is the right page to post this apologies if it isn’t.
my lovely darling mum is 93, she is gradually getting frailer and less active. I know she is reaching the latter part of her life but my problem is she is so frightened of dying and I don’t know how to help her.
she has always been scared of dying and for years we have almost made light of it and laughed about her fear being fomo , but ad the end of her life beckons how can I help her. I don’t know what to say to her.
This morning she actually said I’m frightened, I don’t want to die. 🥲
I just didn’t know what to say to her.
I am sad at the prospect of losing her, we have always been so close and when she does die it will leave an enormous hole in our lives, so it’s doubly hard to deal with her fear and me being an ostrich and not wanting to go there!
Anyone have any experience or advice they can offer me.

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coffeeisthebest · 13/09/2023 19:51

I think in your shoes OP I would take a little time to think about my own feelings towards death, process it a little myself first and then when the conversation comes up with your Mum it might be easier to 'go there'. It sounds to me like she wants to talk about it, if you feel uncomfortable do you know anyone else who she might be able to talk some of this through with? Sometimes we just need someone else to sit with us as we talk. When my Dad was dying I found we had conversations that were quite difficult but definitely needed to be had.

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PermanentTemporary · 13/09/2023 19:56

Has she said what she is frightened of?

Maybe she can think of people she knows who've had what she would consider a good death? Would she tell you about that?

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Indiacalling · 13/09/2023 20:04

i am not sure if this is helpful, but I like Tara Brach’s work for helping me think through fear and anxiety. Death is something we all must confront and in our culture, we are not good at this, it is scary. Your role is really listening to her fears and being present with her so she feels loved and listened to, I think. You don’t need to provide answers.

https://www.tarabrach.com/pt1-finding-true-refuge-living-dying-world/

there is also a link to Pema Chodron’s book which I have not read but looks quite good.

Finding True Refuge in This Living Dying World - Part 1 - Tara Brach

Meditation, Emotional Healing, and Spiritual Awakening from Tara Brach, PhD - Psychologist, Author, and Meditation Teacher

https://www.tarabrach.com/pt1-finding-true-refuge-living-dying-world/

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Goodornot · 16/09/2023 11:04

She isn't reaching the latter part of her life. She's bucked the trend in a massive way.

No advice other than my mum is the same and she's passed it on to me. Death is inevitable but that doesn't make it easier

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Prettypaisleyslippers · 16/09/2023 11:07

I found some very comforting information on hospice/end of life care sites when dealing with a relative near end of life. It’s changed my fears, might help?

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FromLittleAcornsGrow · 18/09/2023 19:40

coffeisthebest
thank you for your reply. To be honest I’m quite ok with dying as such. In my job I have sat with lots of people who are dying and it doesn’t phase me, but obviously it feels so different with my own mum.
she is so poorly and frail now but oh so scared and frightened of being alone. But all she wants is me and I am with her all I can be but she isn’t quite end of life as such and I still have to go to work.
I want to reassure her but somehow I can’t find the right words because I don’t really know if she wants to talk about it or not. 🥲

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BishyBarnyBee · 18/09/2023 19:58

Something which helped me was someone suggesting that it will be like slipping back into the time before we were conceived. It's not hard to imagine the world without us before we were conceived, and for me it's quite a peaceful image. So I think - Ok, I'll just slip quietly back into that time. I also think with huge gratitude of all the people who've touched my life and that I remember fondly, and hope that some of the people whose lives I've touched will remember me in the same way. It kind of helps. But might not strike a chord with your mum.

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Mistressanne · 18/09/2023 20:02

@FromLittleAcornsGrow my df is 92 and just the same.
I really wish there were some happy distraction pills for old age.
I think realistically my df will get so tired that he won’t care in the end.
He sits in a dream or sleeps a lot most of the time.

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Muchtoomuchtodo · 18/09/2023 20:03

Does she have a faith? Could a church leader or other appropriate person offer her any words of wisdom?

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TheSummerITurnedChubby · 18/09/2023 20:04

Would it help to talk to her a bit about all the things people will remember about her; things that will make you think of her and so on? So she knows she will “live on” iyswim? Do you or any of your family look like her, have her mannerisms or accent, that sort of thing? What stories will people tell about her; what things will remind you of her, possessions you would always keep

And then there is perhaps some practical reassurance that you will do everything you can to make sure she is not alone, and that she will be comfortable etc

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FromLittleAcornsGrow · 12/10/2023 23:14

Thank you for all your replies, my apologies for not responding sooner. Since I wrote my original post things have changed. Mum has become bed bound and unwell. She is on an end of life pathway, but her mind is still completely active and she’s 100% going to fight all the way. It’s like physically her body has had enough and is giving out. I’m struggling so much with her anxiety and she’s so frightened. The District Nurses could give her something for her anxiety but I’m scared it will make her unconscious and hasten her end before she/we are ready. On the other hand I don’t want her to be anxious and for this to go on for weeks with her just slowly fading away. I feel so conflicted.

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Honeyroar · 12/10/2023 23:19

Could you speak to palliative care? See what they think? I think I’d rather her be given something to calm her than to have her anxious and frightened.

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FromLittleAcornsGrow · 12/10/2023 23:42

honeyroar I tried to ring the District Nurses today to ask them to visit to maybe consider giving her something for anxiety. But no one came I waited all afternoon/evening. I just felt a bit abandoned really!

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ilovemyspace · 12/10/2023 23:45

My sister has not long ago died - she too was so anxious and worried about dying. What the palliative doctors prescribed to lessen her anxiety worked and made her feel calmer - it certainly didn't make her unconscious and hasten her end.
Why don't you discuss options with the doctors? - they want to ease the patient's discomfort, - whether it's physical or emotional - and why wouldn't you want your mum to feel less anxiety and emotional pain? x

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FromLittleAcornsGrow · 12/10/2023 23:53

ilovemyspace you’re absolutely right. I don’t want her to be anxious and have emotional pain, but I actually want someone to guide me/her in this process. She doesn’t want to accept she’s dying and I’m scared for anyone to come out and say that to her because I want to protect her from that. I think I’m being. A coward.

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PaminaMozart · 12/10/2023 23:58

This reminds me of my grandmother in her final hours. It's natural to not want to die. But her quality of life at this point is zero.

Sedation is the way to go. I'm so sorry.

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PermanentTemporary · 13/10/2023 07:49

I'm so sorry you are both going through this.

Can you talk urgently to her GP? I've seen so many people do really well with medication for anxiety, and they're not asleep all the time.

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DiaryLouise · 13/10/2023 07:52

Is there a palliative care team involved? GP is a good starting point if you don’t know how to contact the right people. IME palliative care staff are really helpful with both the practical and emotional side.

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junebirthdaygirl · 13/10/2023 08:22

Muchtoomuchtodo · 18/09/2023 20:03

Does she have a faith? Could a church leader or other appropriate person offer her any words of wisdom?

This
She might like to have a chat with a minister who are usually quite experienced in being with people before death. I think it's normal enough to be scared. I was glad my dad slipped into a coma as l would have found his fear so painful. Having your mom peaceful at all costs is so important for her and also later on for you.

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HoppingPavlova · 13/10/2023 08:27

If she had reached this age and has not come to peace with it then I imagine medication to stop the associated anxiety is the only thing that will do the trick. Whether that sense of peace comes from within or an external source is neither here nor there but it is important at this stage.

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FromLittleAcornsGrow · 13/10/2023 16:38

Thanks for all your responses. The GP has started her on Lorazepam for her anxiety so hopefully that will take the edge of it
without completely sedating her.

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FromLittleAcornsGrow · 08/11/2023 12:39

As an update and also to ask for some more advice.
mum is still very much with us. Fighting to stay alive although she’s slowly fading away. She’s now bed bound and requires all care.
I haven’t worked for 8 weeks now. I’m pretty much with her 24/7. I’m the only daughter and my brothers pop in and out but the brunt of the care is falling to me. With the help of chc nhs end of life care.
There have been many ups and downs in the last 8 weeks.
she’s had two urine infections which have sent her loopy. She’s often paranoid and confused, thinks we’re poisoning her.
she eats very little.
The palliative Team and district nurses are involved.
she has morphine and lorazepam orally but often declines it (due to the paranoia) we’ve had to call the district nurses and GP out several times for pain control but she declines everything.
I am not sure she has the mental capacity but still they just leave and we’re left to deal with the pain and distress. Surely this can’t be right?

I’m exhausted with the emotional roller coaster of her being up and us thinking she’s improving to her going down again and thinking she can’t survive much longer.
i am starting to resent my life being on hold and having to give up everything including my busy working life. Then I feel guilty for thinking this.
I always said I wouldn’t put her in a home but I’m starting to think I might just have to do this.
I have terrible nights with her, then we get given night sits and she sleeps all night, so we lose them again!
the nhs chc care will be reviewed shortly and I don’t know if it will continue?
It’s all just getting too much.
anyone who can offer me any advice?

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PaminaMozart · 08/11/2023 14:36

I am by no means an expert, but I think the time has come for your mum to go to a nursing home where she can get the appropriate 24-hour care. I imagine that they would also have more options than district nurses, including IV anxiolytics, which would help calm her down and make her less agitated.

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PermanentTemporary · 08/11/2023 14:39

Would you ring the palliative care team now and tell them that you are too exhausted to go on and you need to stop caring? A big reason why people get admitted to hospice eventually is carer breakdown.

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DiaryLouise · 08/11/2023 15:56

Agree with PP that it sounds as if hospice care might be appropriate. Have you talked to her team about that at all? I know when DMIL was dying it made everything so much easier as the family were able to focus on being with her and each other emotionally and didn’t need to worry about the practical side as the nurses were so experienced. Also means you can get away and rest, which you need.

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