What matters most?

Alison

This narrative is from a discussion between Ceridwen, photographer and director of this initiative, and her sister, Alison where they discussed the experience of caring for their mother in her final days. The death of Joan was the catalyst for creating the ‘What matters most?’ project.

“She loved the cats and dogs and the knitting in the sun. She loved the journey. Always had an adventure. Her journeys always turned into adventures, because they usually go wrong. Se was a person that would walk through a field causing chaos behind her and be completely oblivious to it. Yeah, I think that sums her up actually.”

Their mum, Joan, embarked on her final journey during the first wave of Covid-19. She had a stroke at home and was taken to hospital by Alison, a nurse. The hospital identified quite quickly that she not only had a severely blocked carotid artery, estimated to be 95% and this meant she was at a high risk of further strokes. Following scans it was also discovered that she had a cancer of unknown origin that had metastasized throughout her body. She was informed that following a multidisciplinary team meeting they had decided that there were no treatment options other than palliative.

Alison and her sister Nicky, who was visiting from Australia, agreed that they would take over the day to day care of Joan. Given the cancer was so widespread they recognized that it was not likely to be long before she died, however, they were all surprised at the speed of progression of the disease.

“We didn't actually get a confirmed diagnosis because I think she died too quick and it was all in the middle of COVID. The first wave of COVID. She had a stroke home and went to the hospital and scans revealed that she had what looked like metastatic cancer. She had blocked carotid artery. She had clots in her groin and her leg was going ischemic It was a bit of a mess to be honest.

It was impossible to do surgery at that point and she was a very high risk of having further strokes. Even without the issues with her artery by that point the cancer was basically untreatable, which was later confirmed by the specialist upper GI nurse. She phoned and said that they'd have an MDT and confirmed there was unlikely to be any treatment other than palliative”

Alison contacted the GP and informed her of the diagnosis. She visited the house a couple of days later where they discussed the possibility of her signing a DNR and pain relief options. The GP decided to start her on Oramorph despite Joan informing her that it had previously been prescribed for a broken hip and had not worked. It was hoped that it might work on this occasion.

“We didn't actually get a confirmed diagnosis because I think she died too quick and it was all in the middle of COVID. The first wave of COVID. She had a stroke home and went to the hospital and scans revealed that she had what looked like metastatic cancer. She had blocked carotid artery. She had clots in her groin and her leg was going ischemic It was a bit of a mess to be honest.

It was impossible to do surgery at that point and she was a very high risk of having further strokes. Even without the issues with her artery by that point the cancer was basically untreatable, which was later confirmed by the specialist upper GI nurse. She phoned and said that they'd have an MDT and confirmed there was unlikely to be any treatment other than palliative”

Alison contacted the GP and informed her of the diagnosis. She visited the house a couple of days later where they discussed the possibility of her signing a DNR and pain relief options. The GP decided to start her on Oramorph despite Joan informing her that it had previously been prescribed for a broken hip and had not worked. It was hoped that it might work on this occasion.

“Mum understood the reasons for doing a DNR. She was at a very high risk of having further strokes. The cancer was inoperable. So yeah it would be flogging a dead horse really doing CPR on someone that had got so many coexisting comorbidities. So no, she understood it. She was comfortable with that, as comfortable as you can be, I suppose. As far as we were concerned, we were being looked after in terms of the GP who understood that mum was dying, and just needed help with pain while it happened.”

Joan loved her house and wanted to be in it when she died. She wanted to be with her family and in a house that she loved. They were given some end of life booklets and leaflets by Marie Curie and Macmillan and told that if there was breakthrough pain to phone the district nurses.

“To begin with we didn't have any equipment and mum was in such pain she had to sleep on the sofa downstairs. She just couldn't move because of the pain. It was so bad that initially she had to toilet in a vegetable box. It wasn't very dignified but we couldn't get her to the toilet. We had to scrabble around and try and get equipment for ourselves and ask friends for advice. Eventually the district nurses arranged for a bed and we found the British Red Cross could supply a commode and wheelchair but it was a real struggle to find anything practical out.”

“We assumed that the GP would be visiting regularly but after the DNR was signed, we never saw the GP again. There was one out of hours doctor that came late one night early on because we phoned in desperation as her pain was 11 out of 10. He was the only GP we saw in person after the form was signed. We felt we had to put ourselves in the hands of other people. We assumed the care would be there and someone would be looking at her meds and their effectiveness but it was nothing like that.”

“I thought they'd be somebody with the eyes on the daily increases of the drug and taking note of its effectiveness or not because it really wasn’t doing the job. We were told she could have the medicine every 2 hours but her pain was so high we were having to call the district nurse before the two hours was up, but then we would have to wait for them to call back as you only got through to an answer phone. What I remember was that the whole time was spent by us all on the phone trying to get help

“I wanted to be with mum, talking to her and looking after her but instead it was just a huge battle of desperation to get someone to help and respond to our phone calls. We told the district nurses, we told the doctor, I even told social services when they phoned up asking if we wanted someone to cook mom's meals while me and my sister went back to work. I just said that's not happening. She's dying. We're not leaving.”

“I thought they'd be somebody with the eyes on the daily increases of the drug and taking note of its effectiveness or not because it really wasn’t doing the job. We were told she could have the medicine every 2 hours but her pain was so high we were having to call the district nurse before the two hours was up, but then we would have to wait for them to call back as you only got through to an answer phone. What I remember was that the whole time was spent by us all on the phone trying to get help

“I wanted to be with mum, talking to her and looking after her but instead it was just a huge battle of desperation to get someone to help and respond to our phone calls. We told the district nurses, we told the doctor, I even told social services when they phoned up asking if we wanted someone to cook mom's meals while me and my sister went back to work. I just said that's not happening. She's dying. We're not leaving.”

At this point Joan still had not been referred to the palliative team. The family asked the district nurses for her to be referred but the GP told them said she ‘wasn't qualified to say that Joan was dying and only an oncologist could say that. “It was ridiculous because we had already been told by the hospital that there was no treatment and she was to receive end of life care. Perhaps there was a delay in paperwork from the hospital, I don’t really know but given she had visited, asked mum to sign a DNR and new her situation we felt helpless.”

“There was no point when it was anything but pretty much chaos because it was just trying to get people to listen. Nobody listened to us. I mean, I even had I kept a record of what drugs she was having, what amounts she was having, what times what days, and the related pain scores associated with those. Everybody knew I was keeping these scores and they were always freely available and nobody took a blind bit notice. Her pain was pretty much always 10s and 11s.”

The family did not feel as if they were partners in Joan’s care. They had been told they could contact the district nurses when needed but they were clear that it was not for emergencies and should they require it they should call 999 which they did several times towards the end of Joan’s life.

“There were times when I would be desperately trying to get hold of someone. Mum’s pain would be through the roof and yet I’d be pacing around, almost like a caged animal, trying to ring somebody but noone was answering the phone. We needed someone to have a look at the overall picture and see that the amounts she was being given, even with the increases in dosage, just wasn't making any difference. Somebody needs to look at the big picture and say, Yeah, this isn't really working.”

“As a nurse I thought I was perfectly placed to look after mum. I know what should have been done, as in, if you're not getting any effective relief from the pain using the recognised norm painkiller. You ask a specialist in pain, which are the palliative team. I was requesting the palliative team and of course I am purely a family member at this point and I can't physically go and get them. But they didn't know of us because there hadn't been a referral made.”

“I think the lack of effective meds meant she ended up over sedated. She was in so much pain it was horrendous. She was given midazolam (a sedative) as well as the morphine and they just kept increasing it but you could see the pain etched on her face. All the midazolam did was make her comatose but the pain never went. I think that actually robbed us of the last days with Mom where she could talk to us. Even though she could not speak or even move she had obviously used all her strength to dig her nails deep into her leg with pain. Seeing those marks and knowing how much pain she was in was heartbreaking.”

“You could actually hear the bones breaking a one point. Something neurological seemed to be happening one night where she was twisting her legs wasn't aware she was doing it. You could hear the brakes. After that episode she had a rotated leg, which was shortened, so either her pelvis or hip have gone.”

Despite telling all this to the GP on the phone they still did not visit. In just two days they made 43 calls to try and get help but were met by answer phone or no answer. They felt as though they were on their own and not being listened to.

An image of Joan taken by Ceridwen Hughes

“You could actually hear the bones breaking a one point. Something neurological seemed to be happening one night where she was twisting her legs wasn't aware she was doing it. You could hear the brakes. After that episode she had a rotated leg, which was shortened, so either her pelvis or hip have gone.”

Despite telling all this to the GP on the phone they still did not visit. In just two days they made 43 calls to try and get help but were met by answer phone or no answer. They felt as though they were on their own and not being listened to.

“What would have made a difference is having somebody acknowledge what mum was saying when she said morphine doesn't work and taking it seriously. And saying ‘okay, let's let's just trial it but we're looking at its effectiveness. You let us know if it's doing any good. And if it's not, we'll look at what alternatives we have.’ That's all we needed really was to be given the opportunity to look at what alternative painkillers were available. If it was just reduced to a manageable level so that she could converse it would have made all the difference.”

“When we considered her dying at home I thought that with my nursing experience we could make her last days comfortable. Between us, the district nurses and the GP we should have been able to make it as good as possible and if not, then it should have been upgraded to the palliative team to come and advise. In the end though it was hell. It was exhausting, unbelievably exhausting. We hadn't slept more than 15 minutes at a time. You know, day and night we were trying to resolve the pain issues.“

“Eventually, just a couple of days before she died she was referred to palliative. One of the Palliative Nurses came in and just read the situation straightaway. She actually cried and apologised and said, I'm so sorry, this shouldn't never have happened. The palliative nurse was also the first person to look in mums eyes. She spoke to her directly and said ‘Are you in pain, Joan?’ Using all her strength she opened one eye and just glared at her.”

“As soon at the palliative team took over everything changed. The consultant visited, she gathered everyone around (including the district nurses and family members) and then and there in the kitchen she asked everyone what they wanted to see happen. Each person was given the space to speak and a plan was decided upon. For the first time we felt listened to and involved. Mum’s meds were changed from morphine and immediately she relaxed. It was instant. It was so sad as it was too late. She slipped into a coma and our opportunity to say what we needed to went. The whole situation could have been so different. Mum kept saying she needed to talk to me but instead I was desperately trying to speak to people on the phone to sort her pain. That's a huge regret of mine.”

Alison was asked ‘What mattered most?’ and she said that in an ideal scenario Joan would have been pain free. She would have liked to have just been able to relax in a calm environment and listened to music. Just fading away, but instead, it was almost like she was doing it on her own because they were so busy trying to chase the care.

“I'm a nurse I can cope with fat she was dying. We had all accepted that but it should not have been like this. Ironically she died with music playing and as she took her last breath The Verve ‘The drugs don’t work’ was playing.”

“You are vulnerable aren’t you? As vulnerable as you could possibly get and you need to be able to rely on the people that are caring for you. This experience has changed me and I don’t think I or my family will ever be the same.”

In loving memory of Joan (1939 - 2020)

An image of Joan smiling taken by Ceridwen Hughes

Alison was asked ‘What mattered most?’ and she said that in an ideal scenario Joan would have been pain free. She would have liked to have just been able to relax in a calm environment and listened to music. Just fading away, but instead, it was almost like she was doing it on her own because they were so busy trying to chase the care.

“I'm a nurse I can cope with fat she was dying. We had all accepted that but it should not have been like this. Ironically she died with music playing and as she took her last breath The Verve ‘The drugs don’t work’ was playing.”

“You are vulnerable aren’t you? As vulnerable as you could possibly get and you need to be able to rely on the people that are caring for you. This experience has changed me and I don’t think I or my family will ever be the same.”

In loving memory of Joan (1939 - 2020)

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