Mum is at the end - a long 48 hours

Hi all,

Just a late night vent as I recuperate from what has been a shocking and long 48 hours.

My mum has been diagnosed with MS since 2002, becoming bedbound in the last two years and experiencing profound cognitive decline. I have been her primary carer, receiving support from carers 4 times a day. Mum and I have powered through, despite her having a horrendous time - seeing your mother lose comfort, dignity and her will is a harrowing thing. I have been studying for my PhD in this time.

trigger warning for description of mum’s current state, end-of-life

On Friday night, my mum fell unconscious and was bringing up coffee-ground-like vomit. We have no idea what has happened, although there is speculation that she has had a major GI bleed and a resultant stroke from lack of oxygen. Called ambulance and told by paramedics she had hours to live. Since then, mum has powered through, been prescribed anticipatory meds and is not taking fluids or food. Wishes to stay at home when passing and has lilac form in place. We have help from local hospice and have been told that mum may have days, weeks, months, depending on whether she declines or plateaus/whether they introduce fluids or nutrition.

The DNs have been a god sent. Having to call them every few hours as mum is in pain and distress every now and then and is using anticipatory meds. I think we will find out in the next 24 hours whether she will have drugs via driver.

It’s limbo like I’ve never known it, and have had to make some of the toughest decisions I’ve made in a short period of time. God knows how things will pan out. I also feel very small and isolated - it’s just been me and mum and it’s almost as if I’ve grown up with her MS. The future is scary, especially being in my mid-twenties and having had mum as main responsibility for at least 10 years.

The silver lining of all of this is that me and mum have shared some intimate, heartfelt moments over the past 48 hours and I will hold this dear to me. Hearing my mum say ‘I love you’ even when battling with the pain she’s going through means more than anyone will ever know.

Again, just a vent and reflection. It would be good to hear anyone else’s experiences with end-of-life care and how best to cope/what to expect x


My heart goes out to you and your family and I hope your mum find comfort in knowing how amazing you are. From what I’ve just read I couldn’t think of a better if not bittersweet way for her to spend her final hours. X


Thank you so much for you message - all Mum ever wanted was to be comfortable. I’ve told her that she’s fought so hard and its now the time to relax and rest x

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@markkk, thank you so much for your heart-felt message and sharing your experiences. From what I have been told over the past few days, everyone’s experiences with end of life are so, so different. I feel terrible asking docs, nurses etc. for a prognosis - I know they can’t tell me and we have to take everything hour-by-hour. Yet the not knowing amplifies the terribleness of the situation tremendously.

My mum was hospitalised last year, wherein she completed a ‘treat from home’ form. The docs and nurses have advised no nutrition/fluids as this could ultimately put her in more discomfort - obviously this is hard to grasp, but I trust their advice and — most importantly — mum is comfortable. However, explaining to family that mum is not being made to ‘starve’ or forced into ‘dehydration’ is an emotive battleground.

A driver has been administered, and it sounds like we have a similar setup to your wife and yourself regarding the palliative/nursing team - I am astounded at how quickly and compassionately they’ve sorted a framework of care for mum, and managing to control her symptoms.

Thank you for sharing your experiences, it sounds like you and your wife have been through a hell of a lot. But I understand how resilient the ‘MS experience’ can make the person with MS and their family members. I hope you two still manage to find some periods of enjoyment together; all my wishes. I will update this thread as and when I can.

I agree that more discussion regarding ‘end-of-life’ and MS would be incredibly fruitful; I find that the topic is often little-discussed, probably because of the notion that ‘people don’t die of MS, you die with it’. Hopefully sharing our experiences will arm others with a bit of knowledge. x


Bless you and your mum.

The precious moments you are having are your silver lining.

Sending much love to you both


Just to say what an amazing daughter you are. Having a girl of 26 and knowing just how much she gives to me when needed and I am still able bodied I just know as a mum how much these days will mean to both yourself and mum.
I hope mum is comfortable and finds peace with you by her side.
Much Love.


Dear @may1997.

I read your story and it resonated strongly with me as I myself have been in a similar situation so I felt I must respond.

I am 32, and my mum was diagnosed with MS in 2001. Over the last 22 years she became gradually wheelchair bound needing to use a hoist to transfer, alongside this she also experienced cognitive decline (albeit mild) and also had short term memory problems (mild).
My mum wanted to remain at home and so we utilised the same 4 carer calls a day by the local authority. I had moved out of the family home and mum was coping okay at first. As her condition declined over the years and she began to develop other problems (including pressure ulcers), she became eligible for NHS Continuing Healthcare and then had 12hour care provided from 8am-8pm (she slept alone overnight fine).

I moved back home to be around and look after my mum in 2017. During this time she started to experience more decline, including loosing dexterity in her hands, and loss of full range of motion in her arms and developing swallowing problems.
She was then diagnosed with Breast Cancer in 2018 (her mum died of Breast Cancer when mum was only 18 so this was scary). She fought through and went into remission.
In May 2023 my mum was taken into hospital as a result of a pressure ulcer and she had sadly developed a bone infection in her pelvis as a result of the district nurses not escalating her case sooner for treatment.
She was sent home prematurely in July and went back to hospital with sepsis just 12 days later. She spent the next 3.5 months in hospital on IV Antibiotics (bed-bound with occasional transfer to a chair). In mid September mum caught hospital acquired pneumonia which she managed to fight off with some further antibiotics and by the start of October she had recovered.
On the 11th October we were informed that my mum had picked up another hospital acquired pneumonia as a result of a bacteria that lives in aquatic environments like the nebulisers and nasal suction tubes they were using with the first pneumonia etc. We were told this bacteria (Stenotrophomomas Maltophillia) is fatal in a lot of cases, but they prescribed a further antibiotic to help. Mum continued to improve and by the 25th October she was doing well clinically. We were all so happy she kept fighting. The secretions that my mums pneumonia was causing she struggled to cough up alone due to her MS and lack of muscle strength so the hospital were regularly performing nasal suction to aid in the removal of the secretions.

On the 26th October at 1.36am I had a call from the hospital to say my mum had been placed onto a CPAP Machine as her oxygen levels had dropped very low. This was because the secretions had blocked her lung/ airway and by time the hospital staff got to her, her oxygen had dropped from 92% to just 61%, and they were to late to try and clear her secretions.

I arrived at the hospital at around 3am, and for the next 7hours I held her hand and we watched on and sadly saw her fade away gradually.

Eventually a doctor came in around 9.30am as my mum had become completely unresponsive and when they shined a light in her eyes she did not respond. We were then told that she was likely brain damaged due to lack of oxygen and increased C02 in her blood and that we needed to give permission for them to switch off the CPAP Machine as mum had suffered from Respiratory Failure and she wouldn’t make it as the machine was not correcting it.

Both my sister and I held Legal Power of Attorney for my mum and this was the hardest decision we ever had to make. My mum was just 60 years old having had her birthday in hospital a month prior on the 22nd September.

The decisions we have to make as young carers are very underestimated.

My mum was my best friend and it’s been a month almost since her passing and I miss her so so much. All I’ve been able to do is cry and cry.

When things like this happen to us it feels very unique, like we are the only person in the world that has ever known grief - but you are not alone. There are others out there who are in similar situations. In my opinion it helps to know that - but always remember that your situation is your own, and no amount of people saying ‘your not the only one’ should invalidate your feelings or emotions as a result of your situation which is ‘unique’ to you.

I for one read your story with a great amount of admiration for what you have done to support your mum. She would be extremely grateful and proud of what you had done for her.

Many people say to me I should be proud at what I did for mum, but in my view she was my mum and I would have done anything for her.
It was an extremely hard thing to sit and watch her take her last breath when I was not ready to see her go.

She meant the world to me, they took the mask off briefly at one point and she told me and my sister she loved us a few hours before the end and said she hopes we are are happy. I think she herself knew it was the end, she did say to me she was scared as well and that was incredibly hard to hear.

Your mum would be so proud of you, and I would encourage you to be there till the end and stay with her. You won’t regret it.

The photo below is my mum, sister and me.

Ashley xxx


Ashley, thank you so so much for messaging - your story is incredibly relatable and I’m so sorry that your mum had to endure such a difficult journey with her health. I know how much our loved one’s wishes mean during these moments.

I’m so grateful to you for sharing such a personal story - no doubt your mum is so proud of you for all the support you gave her during incredibly challenging times. The picture of you with your mum and sister made me very emotional - thank you again :heart: xx

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Ashley, you should be so very proud of yourself as should your sister.
The story of mum and her battle is just heart rendering.
Mum will be looking down on you both with love .
Much love

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Thank you, @marymcdermott. I’m certain that your daughter is an amazing person, and is incredibly grateful for you (like I am for my mum). I will always cherish the memories we share of her when she was more able - we really got up to a lot of mischief and had a load of fun. X

Thank you, @Isis. It’s what my mum would have wanted, and she is surrounded by love and compassion. :heart:

Thank you so much for sharing your experiences, Mark and Portia. The variations at advanced/‘end of life’ stage are vast, as everyone’s posts have proved - I know that having a pool of experiences like this one would have helped me during my mum’s MS progression. x

Hello everyone, my mum passed away peacefully this evening at home. I was able to hold her hand and tell her how much I loved her when she passed. I realise how much of a privilege this is, that mum was able to leave us in the way she wanted. :orange_heart:

I am so sorry for your loss my thoughts go out to you and your family x

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So sorry for your loss

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So sorry of your loss. Mum will be at peace and always with you.
Much love