Should I have told her

My darling mum died 4 weeks ago. It was such a shock. She was very shy quiet sensitive lady with a history of mental illness that focused on a terrible fear of cancer and dying. She had a bad back for months. X-ray showed all clear. She then developed pneumonia which caused her to collapse. She was in hospital with fluid on her lungs and was very very ill. 4 days later after tests on the fluid on her lungs it came back she had metastasised lung cancer. The dr told us if she could get rid of the infection we could take her home and she would have a few weeks. But he did think it was unlikely and realistically probably only a week left. They told mum her diagnosis but not prognosis. She asked me “how long have I got”. She was is so much mental distress as she had literally just been told. And cancer her worst fear. I tried to focus her mind on the infection I said “it’s the infection you must fight first then we can take you home and deal with the cancer”. I told her I didn’t know how long she had. She died two days later. I feel like I robbed her of her goodbyes if she knew she only had a few days left. We brought the whole family to her bedside we all told her we loved her and she said it back. So I wonder if she knew deep down. I just wanted to protect her from anymore distress and fear.

I just wanted to give her some small hope so we could get her home. I asked a Macmillan nurse to talk with her to help ease her mind and they went over all the information with her asked her questions she thought she might have. At this stage she was on a mask and couldn’t really talk properly. If we had had a few more days with her. I think we would have broken it to her gently then. But I just couldn’t give her any more distressing news on the day she was told about the cancer. She was told it was terminal. And she died very quickly two days later. The day after the diagnosis she was virtually unconscious so we really only had a day and half with her from when we got her diagnosis. None of us could take it in and we were all shell shocked. She went into hospital with a chest infection. And now she was dying.

I am really sorry that this happened to your mum. I think you made the correct decision - there is a time and a place, and that was neither the time nor the place to tell her that she had just a few weeks left. Had she been able to get a bit better and come home for a few weeks, then you could have told her that she doesn’t have too much time left, but when someone is very sick and in hospital and has a history of mental illness, then the decision you made was the correct decision.

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Thank you Abdullah. This has given me great comfort. I do still worry over it sometimes. We had such little time from diagnosis to death it was impossible to have any kind of discussion about anything. As we were all reeling. In a state of shock. We all just sat there for two days numb and looking at each other no one knowing what to say or do. If she had lasted longer we would have had honest important discussions. But in the end she died very quickly but peacefully. She was so frightened so it was a blessing for her. I’m extremely grateful for those two days where I told her endlessly I loved her. And thanked her for being an amazing mum and nanny.

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So sorry that your mum was scared and had mental health problems. My dad, like your mum, suffered from depression and was worried about dying, he wanted to see things before he died, like his grandkids, and he wasn’t ready to go.

In June 2018 he was asked to go to A&E as his blood tests showed high potassium. He already had heart failure and diabetes, and we always were worried he might die, but this was a bit of a shock. After a week in hospital dad phoned me and told me they said he has kidney failure but he is too old for a kidney transplant and might need to go on dialysis. That’s when I knew he has a year or two left and was devastated. He came home a week later, and he was very sick as his kidneys were barely functioning. Most days he would barely be able to eat anything without throwing up, almost each time I would phone him and mum, he’d be unwell, some days would be ok, most wouldn’t, he lost 10 kg in less than a month, it was awful each time I went home, and saw him struggle. He knew he was dying, he started talking about dying, and it made me so sad.

At the end of July we had an appointment with his nephrologist at the hospital, but he was busy, so we saw the renal nurse instead after waiting for hours. She told us that if there were two of him, and one had dialysis, and the other didn’t, it would make no difference. In other words, there was nothing they could do and he would die. But dad got confused, and didn’t understand, and thought she said he doesn’t need dialysis and can get better without. That was so sad, as he hated the thought of going on dialysis as he had seen a man on it when he was younger, and that scared him. I asked the renal nurse what his GFR was, she said it was 13 in June, which I knew meant dad had only a few months left. I was totally devastated, and phoned my eldest brother as I walked to my car, and told him, but never told my other brother and mum, and it would just make them very depressed. That day was very sunny, and as we left hospital around 4.30, I told dad that we should go for a drive, and I was so sad, yet so happy that just now my dad was feeling well, and I could spend some time with him.

August was a terrible month, with the constant vomiting, and barely any days when he would be able to eat anything without feeling sick. He continued to lose weight, and on September 3rd we had another appointment. I was so worried as I thought they would tell explicitly he is about to die, but we saw another nephrologist, and she said he will need to go on dialysis. Dad asked how he would cope when he is so sick, and she said they will do their best. She wanted to test him for bowel cancer, but that could further damage his kidneys, so I told dad we won’t do it. I mean, if he did have bowel cancer, what difference would knowing he had it make? He was too weak and chemo would have made no difference. I took him back home after his appointment, and he seemed happy, and so did mum, and he ate a whole plate of porridge without throwing up. I drove back to my home, and then at 6pm my mum phoned me, and the blood test showed high potassium again. I said I am coming home again, to take my dad to hospital, but he didn’t want me to, as it is about a 2 hour drive in traffic, and he said he will go tomorrow with me. About 9pm my mum phoned me, she said dad is very very sick, and so I phoned the ambulance and rushed home. When I got there about an hour later (as I drove fast on the motorway) the ambulance still wasn’t there. Dad was having a heart attack, and it was awful seeing him struggle. Ambulance finally came an hour later, and they took him to A&E. When I got to A&E dad was very sick, but they gave him medicines, and within a few hours he was better enough to be able to talk to me. We talked a lot and I told him how sad I will be if he died, he was telling me not to worry, then when the nurse brought some tea and biscuits for us, I prayed he would be able to eat without throwing up, and he managed to eat the biscuit. Hurray. At 5.30am he told me to go home, I did not want to leave him but had been awake for more than 24 hours, and so I drove back home, slept for 2 hours, then went and took mum to see dad, who was in the Acute Medical Unit now. A few days days later I phoned dad at lunchtime, he said he is an ambulance being taken to Hammersmith Hospital as they have a specialist cardiology unit. Then the paramedic took the phone from him and asked me for my number and if I was the next of kin. I was so worried as he was in an ambulance with its siren on and she’s asking my number.

At Hammersmith Hospital they told me his potassisum isn’t being reduced by medication. That means he is at a very high risk of dying by a heart attack, so he should start dialysis, but that also has a high risk of killing him. I was so devastated, but made the decision he should start dialysis. Again, I did not tell my dad or mum or brother that it might kill him. They were going to put the temporary line for his dialysis in his leg in the afternoon, so I got to the hospital for the afternoon and asked what time they will do the procedure, and they said they have already done it and he’s about to start dialysis. So I rushed to the ward, and he was alone, in bed, with a Thai nurse who was about to start dialysis. He was soooo scared, so was I, but I was so glad I was there with him. They started it, it was so scary for both of us, he was feeling dizzy, and I was texting friends on WhatsApp asking them to pray for him. He made it through and I was so glad.

The temporary line failed after a few days, and so did the other temporary line they put in, so they had to put the permanent line in. It was difficult, and so they had to bring in a specialist surgeon to do it as the other surgeons couldn’t, and thankfully it worked. After a month he was discharged - the doctor told me he will very likely die within a few months as dialysis is brutal on the heart of elderly patients with heart failure, like my dad - again, I told no one, and my dad thought he has two years left.

Amazingly, my dad was thankfully doing ok. He had started dialysis in September 2018, and was still alive on May 19. Then in May he told me he is having pain in his chest and thinks he might have a heart attack, the next Thursday as I was doing shopping for them on way home, mum told me to not do the shopping and come home as dad is unwell. I got home and called the ambulance, and they took him to A&E - he had had another heart attack. This Chineseish doctor then came in shouting “FINISHED, FINISHED!”, and my dad thought she was saying he is finished, and was soooo scared. I was furious at her, but didn’t say anything, but followed her out, and tried to listen to her conversation. It became apparent she was a junior doctor and not a specialist in renal failure, and so didn’t know how to interpret his blood test results. That gave me hope, and I told dad he will be ok. Two weeks in hospital, and he survived. Before they discharged him, I visited him in ICU as he was having dialysis, and asked him to name my kids so that if he dies before I get married and have kids, I can name them after what he would have wanted. He told me the names.

After coming home, he was quite unwell and ended up in A&E one night, very scared again. I visited him, and he held onto my hand. My poor dad. Very scared.

Thankfully he survived, and defied all odds to still be alive by 2020. He was starting to get senile, he was much weaker, but thank God, was still here.

Then came Covid. I could see what was happening in Italy, and pleading that we have a lockdown. My dad had to go hospital 3 times a week, he couldn’t self isolate. At the beginning of March I wrote an email to former colleagues, saying we should lockdown. No one took it seriously, instead they said we’re doing fine. This was despite the EU’s epidemiologist saying that if we didn’t lockdown very soon, we will end up like Italy. We went into lockdown three weeks later. By this time it was too late. On 27 March mum called me and said dad is very sick after his dialysis. I am sorry, but I still cannot talk about what happened next. It is horrific. My dad died alone in hospital, suffering. I will never ever forgive the government and NHS England. When they gloat that we did not run out of capacity in ICU, unlike Italy, it is because we dumped patients into care homes and sent them back home and refused them treatment in ICU. They refused to treat my dad in ICU even though the hospital had capacity, they just triaged the older patients with comorbidties like my dad, they never even gave him a chance. I will challenge this, mum wants me to forget about it, she doesn’t like confrontations, but how can I forget, if I had died my dad would fight for justice till the end, so how can I not do this for him, yes, it will be painful, yes it will be devastating asking the hospital for his full medical record during his stay and finding out about their failures, but it has to be done, sorry for the rant, just needed to talk about it, thanks for listening.

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I’m so sorry for your loss. My mum left us end June and I’m having a very low time now. Just miss her terribly. Hugs to all those who miss their Mums x

So sorry that you were having such a bad day. I hope today is a slightly better day for you. Please keep posting if you think it helps.