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
xx