I had a heavy wave of depression on Thursday, which I can still taste. It was as if all the disappointments, fear and pain of my life was on me – from my dad, through disastrous relationships, mental illness of others, miscarriages, deaths, sickness and my mum’s suffering… I am not depressed now, but still feel bruised.
Today I was advised of a multi-disciplinary meeting , to be held on 22nd September, and was warned that they will be sending Mammy out ‘into the community’ as there is nothing more that they can do for her, as ‘her needs are not too severe’. I will be expected meanwhile to find a suitable home for her. Help!!!! I will need to contact the social worker for some direction in all of this, as I don’t know what sort of places are available or suitable.
I stayed some time with Mum, who was very concerned about ‘the babbies’ again and I had to keep reassuring her that the babies were all sorted and happy and that she had done it all. She kept shouting for ‘Help!’ and ‘Stop it!’ but was unable to explain. Suddenly I realised that it was after 5pm and tea-time. I fed Mum, but was reminded twice about ‘protected mealtimes’ – implying that I should not be there at mealtimes. I said that if I am not allowed to stay and feed her, that they should let me know for definite. I’m feeling defensive and very irritable about their attitude here!
This morning I found a message from the Maxillofacial Unit, saying Mum’s operation is next Monday. It said that she would also be required to attend tomorrow for a pre-clerking and I was to phone back if we could attend. I rang Gold Acre, but they had not yet been informed. It has finally been confirmed, but I will have to take Mum in myself, as Gold Acre ‘do not have the staff to spare at short notice’. I cannot get Mum into my car, so I’ll have to order us a big taxi to the West Hospital and back, before driving myself home.
Mum was washed and ready and the taxi came swiftly. In the waiting room at Maxillofacial, she started to make sudden involuntary noises and to sing, coming across quite loud in that environment; the other people waiting seemed bemused and slightly disturbed by her presentation, but Josh (who I’d asked to accompany me) and I were amused, knowing that she was happy and enjoying herself. She even shared Josh’s earphones and listened (equally bemused) to some of his ‘noise-music’.
We waited nearly 2 hours until the whole waiting room had emptied, before we were called through to see two nurses. Mum had to be weighed and measured, have blood taken, blood-pressure measured, swabs taken, ECG done, and I had forms to fill in. The nurse asked me if Mum could walk and stand and although I said yes, I added that understanding the instructions is the problem. Getting Mum on to the scales was a comical palaver involving Josh lifting Mum’s feet one at a time and me heaving her forward, whilst the nurses stood watching. Because she was coming from a hospital, the rules were much tighter on hygiene, with a long list of questions about infections, medications, etc that I was not able to fully answer.
They have given Mum some ‘Antimicrobial Wash’, which she will have to be washed in from now until the operation on Monday. They also gave the usual instructions about food starvation from midnight before the operation. Their biggest concern was that Mum should have an escort with her all day, otherwise they would not go ahead, because they themselves do not have ‘specialist’ staff. I assured them that Gold Acre would be sending someone, as a week is not ‘short notice’. They did say that that they would endeavour to give Mum the first operation of the day, to lessen the risk of her needing to stay in over night. Doing the bloods was stressful as the needles made her jump, but we got through the experience with the promise of some chocolate. The last call was for the ECG. At the end, Mum’s mood was turning sour, so she didn’t enjoy the hot chocolate or the sandwich.
The taxi came very swiftly, but it was half past rush hour and took forty-five minutes to get a very grumpy Mum back to Gold Acre. I gave the papers to the nurse in charge and explained all the instructions. I told her that I would be at the hospital at some point during the day, but that I had other commitments on Monday.
On Wednesday I got a call from Gold Acre explaining that they were not prepared to send anyone with Mum on Monday. They knew that the West Hospital would not go ahead therefore and that if she is to have the operation, I will have to go and stay with her all day. The Mental Health practitioners apparently “do not stay with patients in ordinary hospitals” and ordinary hospitals don’t admit mental-health patients without ‘a full escort’. The obvious conclusion:- mental health patients do not get the operations and treatments that they need, unless someone else is there to sit it through with them!
The ward manager seemed to imply that it was my fault for arranging the operation, when in fact the doctor, back in May (2 months ago), had said that Mum needed to have the cyst removed as soon as possible. I cannot leave Mum with an untreated cyst growing in her mouth, displacing her teeth and nostrils. They still don’t even know whether the cyst is cancerous or not.
I don’t understand whether this has been a recent policy shift, but I have twice been to meet Mum at the West Hospital, having being escorted there by Gold Acre staff, who stayed with us for the duration of the appointments and took Mum home again. Now they are not prepared to do that. I am disappointed that again the system is allowing the most vulnerable to be neglected – as if they do not deserve to live in any comfort or dignity and are better off dead sooner rather than later. Whilst I can understand a depressed person wanting to find a way out, I cannot understand a healthy person not wanting to offer unconditional care. But I guess I am the one responsible for Mum’s care, not the ‘system’.
My garden is now completely overgrown. I have harvested a feast of garden produce – garlic, onions, potatoes, beetroot and peas – but I spent too long bending, pulling and definitely not looking after my back or pacing the work. I still await a promising crop of tomatoes, grapes and apples. My garden is such a gift!
Gold Acre staff finally agreed to take Mum in for her operation, at least, so I met them there just after 8.30am. It was suggested that she might have to stay overnight, which of course would mean me staying too. The nurses had managed to get Mum first on the list.
We dressed Mum in the backless gown and then the escort left. Mum perked up a bit then and responded positively to my conversation, tickles and jokes. Wheeling along the corridors in the flat-tyred wheelchair and later on the bed trolley, Mum was clearly enjoying the rides. “Wheee…” she giggled around each corner.
In the anaesthetist’s room I felt in the way as the tiny room was over-crowded by Mum, me and the two nurses. They needed to shuffle her up the bed, so two male nurses squeezed in too. To reassure or hold her still, I was apparently useful – also to answer the questions of course. Despite the warning, the needle still hurt her then on with the sticky monitors, oxygen mask and sleepy juice…a kiss and I’d gone. She’ll be fine…
Less than an hour later, without even time for a doze, I was recalled to the recovery room. Mammy was screaming and throwing her legs all over the place, with blood seeping from her nose and mouth. She was clearly in great distress, whether it was pain or not I couldn’t say. The monitors did not show anything obviously wrong. The anaesthetic should still be making the operated area numb, but as Mum didn’t calm down they gave her 6mg of Morphine, then a shot of Lorazepam, but Mum continued howling and writhing around the bed.
They took her back to the ward where I tried to calm her. Her glazed yellow eyes were swollen and bulging, looking manic. Sometimes I whispered, “Mammy, Mammy, it’s alright.” then her screams would settle more quickly, but I didn’t seem able to improve her overall discomfort.
Was she hallucinating or speaking to us as she shouted “Go away! No! Go home!”?
When they straightened her up in the bed they used a slide mat and four nurses, so it’s no wonder that I struggled. I asked if I could have a break to stretch my legs and have some food, so I went to the café and sat with an elderly couple for a little while.
Back on the ward, Mum was still in great distress. As the afternoon faded I was resigning myself to a long day and night there for us both. She would not let me moisten her dry, bloody lips and I supposed that they would require her to be stable and to have eaten before sending her home.
She was slightly less volatile by 4pm, but still contorting her face, shouting, “Kacker, you’re my mother…Avril, I love you…No! No! Tell me why…Go away!”
They said I would have to wait for the doctor to do his rounds so I tried to get Mum to drink some water, but I couldn’t even get her to sit up.
Amazingly, an hour later I was told that Mum could go home. Getting her up and dressed was a fiasco, but I have to admit to being highly motivated to getting her back to Gold Acre, where she could begin to recover in peace and I could go home. Two nurses helped me get Mum ready, then the doctor came and said that Mum’s cyst had been very substantial and that she must use the mouth wash regularly. He would like to see her again in a couple of weeks and there should be results of the biopsy by then. It was becoming obvious that Mum’s teeth and nose were already going back into place. She looks like she’ll have another black eye though.
Back in the taxi I was very relieved, but Mum objected to the bends and speed bumps and suddenly she yelped and heaved. The driver administered tissues and bowls just in time as Mum vomited up copious amounts of thin, brown bloody fluid. We continued and were using the second bowl as we pulled up outside Gold Acre. The smell had long since turned my stomach too, but the driver was completely non-phased by it all. The special taxis have been really superb.
Mum was greeted with smiles and a cheerful welcome, and after depositing Mum, medication and all the information, I got a taxi to Isabelle’s and was soon enjoying a beer in her garden, with time to reflect on the blessings that far out-weigh the limitations of the NHS.