To feel angry, helpless and scared

Pirrin · 15/02/2023 04:10

I'm so sorry to hear about your lovely mum

Is it possible that she's making a lot of movements and noises associated with end of life that look a lot like what we'd recognise as pain (in a healthy person) but aren't? I remember a relative who was dying made all manner of odd noises including some unconscious lunges and gasps that were awful to see, but in their lucid moments were reassuringly not in any pain at all. I'm sorry if this is clearly not the case, just wanted to mention it on the off chance.

Either way I hope you (and your mum) can have some peaceful last days.

Original poster

Teenangels · 15/02/2023 04:21

Pirrin · 15/02/2023 04:10

I'm so sorry to hear about your lovely mum

Is it possible that she's making a lot of movements and noises associated with end of life that look a lot like what we'd recognise as pain (in a healthy person) but aren't? I remember a relative who was dying made all manner of odd noises including some unconscious lunges and gasps that were awful to see, but in their lucid moments were reassuringly not in any pain at all. I'm sorry if this is clearly not the case, just wanted to mention it on the off chance.

Either way I hope you (and your mum) can have some peaceful last days.

Unfortunately Mum, does not have any lucid moments, she has not opened her eyes for more than a week.

My mum is not making noises, as she lost her ability of speech about 5 weeks ago, she can't swallow at the moment, but her face changes and tenses up and so does her body.

Thank you for your kind words, I just thought with all the carers, nurses and hospice team Mum would be more comfortable.

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JudgeRudy · 15/02/2023 04:25

Teenangels · 15/02/2023 03:59

My beautiful, kind, caring Mum is in the last few days of life, with dementia and I feel so angry and helpless that there is nothing I can do. My Mum is in her early 70's and had dementia for 5 years.

We only moved her into her care in December and they told us she was at end of life 3 weeks ago but that end of life could be months ie she was slowing down.

We were promised that when the time came she would be comfortable, pain free and that she would have dignity.

In the last few weeks so has stopped eating, stopped talking and now can't swallow, or even open her eyes, she is clearly in pain even with morphine but when I tell the carers and hospice team they say that she is comfortable.

I am watching my glorious Mum slip away with malnutrition and watching her suffer, asking myself is this fair.

I can't sleep, or think about anything else but Mum. I am going to work, sorting out the kids, house, life admin and doing a house renovation, whilst supporting my Dad and dealing with other family members and health care professionals, and then sitting with my Mum for hours on end, watching her slowly slipping away.

Why let anyone suffer like this, it's so unkind.
I am not sure why I am even writing this but it feels easier to just write it down.

Are you sure your mums in pain? Could it be that you have not prepped well for this and didn't know what to expect? It's quite usual for people to stop eating when they're end of life. This isn't malnutrition. Her body would be unable to process food. Its also not unusual for people to make little noises and grimaces. This isn't pain, she's just loosing her filter. Morphines pretty good stuff.If she's no longer drinking her end will be literally days away so prepare yourself.
At this time your mum is your priority. It seems reasonable to request compassionate leave and put work to one side. It's likely she'll recognise your voice and find a hand hold comforting.
I've been through this myself and it's not like the movies at all. It's gonna hurt some more I'm afraid, but you'll get through it. I found repeating things to anyone who'd listen helpful. Most had no advice but each time I said something I accepted it a little more. X

Summer2424 · 15/02/2023 04:27

@Teenangels i'm so sorry you're going through this 😔
I watched my Dad pass away when they switched his life support machine off, he was 60 yrs old. It's the most painful thing seeing a parent slowly pass away.
Sending you lots of strength to get through this time xx

Original poster

Teenangels · 15/02/2023 04:39

JudgeRudy · 15/02/2023 04:25

Are you sure your mums in pain? Could it be that you have not prepped well for this and didn't know what to expect? It's quite usual for people to stop eating when they're end of life. This isn't malnutrition. Her body would be unable to process food. Its also not unusual for people to make little noises and grimaces. This isn't pain, she's just loosing her filter. Morphines pretty good stuff.If she's no longer drinking her end will be literally days away so prepare yourself.
At this time your mum is your priority. It seems reasonable to request compassionate leave and put work to one side. It's likely she'll recognise your voice and find a hand hold comforting.
I've been through this myself and it's not like the movies at all. It's gonna hurt some more I'm afraid, but you'll get through it. I found repeating things to anyone who'd listen helpful. Most had no advice but each time I said something I accepted it a little more. X

Show quote history

My weighs about 5 stone as she has lost about 2.5 stone in 3 weeks, when she was still able to move around she stopped eating and has not eaten for about 2 weeks as her dementia made her forget.

Mum is definitely in pain as she shows visual signs of pain and was saying she was in pain when she still could answer the carers questions.

I perhaps have not be prepped well for this, the care home said that she would be comfortable and not aware of anything going on, she was sucking on her fingers and when she was being given a syringe with water in she was sucking that dry but the carers would not give her more than 10 mls at a time because she could have choked.

I was with my Grandmother in her last few days, but she had a syringe driver in place and was peaceful and slowly slipped away, it would seem my Mum is not going to get that.

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Original poster

Teenangels · 15/02/2023 04:41

Summer2424 · 15/02/2023 04:27

@Teenangels i'm so sorry you're going through this 😔
I watched my Dad pass away when they switched his life support machine off, he was 60 yrs old. It's the most painful thing seeing a parent slowly pass away.
Sending you lots of strength to get through this time xx

I am so sorry about your Dad.

💐

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ShippingNews · 15/02/2023 04:43

I'm sorry you are going through this, op. But keep in mind that all these things, not eating/ drinking/ swallowing/ speaking , are a normal part of the process she is going through. She isn't dying of malnutrition, her body no longer needs those things . If you think she is in pain, talk to the person in charge of her care.

Original poster

Teenangels · 15/02/2023 04:55

ShippingNews · 15/02/2023 04:43

I'm sorry you are going through this, op. But keep in mind that all these things, not eating/ drinking/ swallowing/ speaking , are a normal part of the process she is going through. She isn't dying of malnutrition, her body no longer needs those things . If you think she is in pain, talk to the person in charge of her care.

Mum is not ill with anything other than dementia and her inability to eat, forgetting to eat and not understanding the need to eat is the reason that she where she is.

I understand that now she is not hungry now and her ability to swallow has come about as she is dying.

Malnutrition is a common cause of death for people with dementia.

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mrscumberbatch11 · 15/02/2023 05:05

@Teenangels oh I am so very sorry. Dementia is just awful.

I have a little experience of dementia but have not been there at end of life so I don't have experience of that.

I hope your mother is not in pain, as others have said, but you are there and you know her best. If you feel she is, please do speak up to the staff.

You sound like you are doing so much; please make sure you are looking after yourself as well. Would it be possible to get some compassionate leave from work and just be able to focus on you and your mum for a while.

You sound very strong, your mum must be very proud.

Thinking of you and your lovely mum

Holly60 · 15/02/2023 05:07

It sounds to me that you really aren't happy with the care she is receiving and are worrying they aren't doing their best for her.

I just had a quick google and the Alzheimer's UK charity have a dementia helpline that you can call. Why don't you give them a call and discuss it with them. If they agree she isn't getting the best care to they may be able to give you some advice of what to do. Or they might be able to reassure you that she is comfortable

Original poster

Teenangels · 15/02/2023 05:18

Holly60 · 15/02/2023 05:07

It sounds to me that you really aren't happy with the care she is receiving and are worrying they aren't doing their best for her.

I just had a quick google and the Alzheimer's UK charity have a dementia helpline that you can call. Why don't you give them a call and discuss it with them. If they agree she isn't getting the best care to they may be able to give you some advice of what to do. Or they might be able to reassure you that she is comfortable

The care staff are wonderful and go over and beyond for Mum.

They are doing what the hospice and GP are telling them to do.

Mum appears comfortable when the district nurse comes in for 5 mins after a dose of morphine but when you are sitting in her room for more than 5 minutes you can see her pain and that she is uncomfortable, it's the fact that we are not being listened to.

The care home contacted the GP on Monday as an emergency to say that Mum could not swallow anymore and could they prescribe morphine patches the GPs response was I will see her on Wednesday and see what to prescribe, the poor carers have continued to have to give her oral morphine knowing that she could choke, as they know she is in pain. My ♡ breaks for the carers having to do that.

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MontyDonsBlueScarf · 15/02/2023 05:22

I'm so sorry to hear about your mum.

I think maybe there are two things going on here. As people have said, maybe you are misinterpreting some of what you're seeing as this is a totally new situation for you. But also, maybe the people caring for her are not out and out specialists in end of life care.

If your mum is in a hospice or similar, I would trust their judgement. If not, I would press for an urgent consultation with whatever palliative care/hospice teams you have available locally. They will be able to either reassure you, or arrange whatever else your mum might need. Don't be afraid to ask, it's no different to asking for a referral to any other specialist and isn't a criticism of her current care team.

Sending strength.

Original poster

Teenangels · 15/02/2023 05:28

MontyDonsBlueScarf · 15/02/2023 05:22

I'm so sorry to hear about your mum.

I think maybe there are two things going on here. As people have said, maybe you are misinterpreting some of what you're seeing as this is a totally new situation for you. But also, maybe the people caring for her are not out and out specialists in end of life care.

If your mum is in a hospice or similar, I would trust their judgement. If not, I would press for an urgent consultation with whatever palliative care/hospice teams you have available locally. They will be able to either reassure you, or arrange whatever else your mum might need. Don't be afraid to ask, it's no different to asking for a referral to any other specialist and isn't a criticism of her current care team.

Sending strength.

Mum is at her care home, the carers are following what the local hospice are suggesting but they only come and see her every couple of days. Unfortunately she is not well enough to be moved.

Mum had end of life drugs prescribed for her but the hospice team say that if she is comfortable they are not needed, my point is they are only with her for a few minutes at a time the carers come and change her position every 2 hours, my Dad and I are with her for hours on end and can see that she is agitated and in pain.

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MontyDonsBlueScarf · 15/02/2023 06:01

I can see why you are concerned, then.

There's a new thread 'Anyone well versed in end of life care ' which might set your mind at rest.

If not, then I would explain your worries to the hospice team next time they visit (or over the phone if you can), they are there to look after you too.