It’s the feeling I had no time to experience while I was busy clearing the house and resting in between. Grief. The now decluttered house is a constant reminder of mum. I hear her telling me to ‘get on with it’, not to worry, and to take it easy in preparation for several rather unpleasant procedures. For over a year, I didn’t have a sense of her. There was too much to organise. To clean. There wasn’t time to miss her. Now everything reminds me that she’ll never be home again. That there will be no more cups of delicious coffee to share, no more smells of stale boiled egg to avoid and no more gentle encouragement to take the lactulose as the GP advised to reduce the abdo pain caused by a lack of fibre. Mel and Rebekah weren’t too bothered. Indeed, in between the memories of mum, I get flashes of those two standing near mum while she was crying because of excruciating pain. Of Mel refusing to give her paracetamol. I had no idea that this wasn’t unusual; that both would forget all about caring in the last few weeks of mum’s life. There are no records of either having given her Oromorph. If I asked mum how things were and she whispered ‘pain’, I passed that information on the the carer on duty, trusting her to give whatever pain killer she felt was appropriate. Mel used to be so conscientious and kept on top of things. But sometime after the first of May, she began to decide that mum needed to tolerate her pain. Indeed, she once told me that mum would soon fall asleep so there was no need for anything. With that, I left her. I was told and thus believed the pain was very temporary. Risks and benefits. There was no pressure. It wouldn’t have occurred to me but then, I didn’t realise that wasn’t a one off. That this happened every two hours (Nurses’ record, 13th May). And that it wasn’t always mild and transient.
I see a gaunt, strained face, clearly suffering, and it haunts me. In the records I have, there are references to her crying in pain. (Mel and Rebekah stopped keeping records and the ones I had do not list Oramorph or lorazepam). It seems that the agency carers were the only ones to give her these drugs. Did mum think I had instructed Mel and Rebekah not to give her those medications? Was she angry with me? Did she have any idea from the gossip which she almost certainly heard that the instruction came from her son? That the three colluded to keep her in pain when she reported it and that this all happened behind my back. That Rebekah would ring the one or more of the agencies at Mel’s request accusing me of putting pressure on them to give mum a drug they decided she didn’t need (Ombudsman’s report)? That they had taken power away from her.
I never thought of installing CCTV. I had no reason to believe that mum wasn’t getting excellent care. Until I read the GP’s records and realised the wickedness and cruelty mum was subjected to. That three people would collude to deny a dying woman in pain a small dose of a drug that would make her last days more tolerable. Had I known, I would have fired the carers on the spot. But I didn’t know.
What went through their minds which turned these previously decent people into beings happy for mum to be in pain. Pain that distorted her face. Pain that made her cry. She never cried before. I saw it only in her last few weeks, when the pain got too much. I had informed two district nurses. Mel and Rebekah didn’t inform anyone. They didn’t back me up. They stood by and watched mum suffer. Now I ask myself why I didn’t alert the GP? After all, he had prescribed the drug to be given up to four times a day. According to the records, she got 4 or 5 doses in all the time it was available.
Nights are particularly bad. So many thoughts. Why did mum not let me know? All I heard was ‘pain’. Why didn’t she tell me that Mel was withholding such a safe end of life medication. Why had she and Rebekah gone rogue? Until the phone call that brother had complained about me pushing the carers to give a medication they felt she didn’t need, and hence the danger of overdosis, I was totally clueless about the campaign going on behind my back. If the GP had only checked, he would have known she was grossly underdosed. In this day and age, no one needs to suffer pain because a carer refuses to give it. I feel guilty for not having flagged up sibling’s odd behaviour in the years before, as he had got away with it and this had clearly emboldened him. But what had mum ever done to warrant such torture those last three weeks? She had loved him. As far as I can recall, she never denied him anything. She was proud of him.
When he first asked all three of us not to give the two drugs, as ‘he didn’t like them’, I told him that we would do the best we could for mum. Alas, that wasn’t enough. (It’s in an email.) Mel and Rebekah might have assured him, but I was the loose end. So by doing the rounds of various agencies, he ‘groomed’ people by portraying me as stupid, mentally unstable, prone to manipulate and abuse, and being too keen for mum to have Oramorph. I was not a loving daughter but a danger. I felt guilty for not having acted on the signs but would anyone else have? Would anyone else have even thought for a minute that people she thought were reasonable and decent decide to keep a dying woman in pain?
I can’t feel guilt anymore because I wasn’t aware of the situation. But I cry for the lovely lady who had been subjected to such malice for those final weeks. I wanted and paid for everything I thought would allow mum to have a good death. Having found out what actually happened, (social services didn’t tell me), I realise she had a most awful final days. And then I feel anger. Anger at those who did this to her. Anger at those who altered records to cover up their own role or refused to let me see them because they wanted to protect sibling. I abhor their failure to check the gossip. Their refusal to pop round and see that bottle was nearly full. To protect mum.
I miss her. I’ve sat near the place where I buried her ashes and told her I had no idea about the rationing of Oramorph and lorazepam. That I’ve always tried to protect her, e.g. by asking visitor to wash their hands before touching mum’s food. I don’t think she ever realised that I was looking out for her. I couldn’t stop brother bankrupting her. Or increasing the risk of a fatal illness. And prevent his piece de resistance, keeping her in pain.
I did my best for her. I just didn’t put the warning signs together. I don’t think many people would have. The inhumanity of the three. I can’t understand it and I am increasingly distressed how totally ghastly her final days must have been. It’s grief and then some. It’s really hit me hard.
A wobbly tulip from Amsterdam. 