On Tuesday there was an odd chuckled response to my ramblings. It was strange really, as everyone seemed to be good humoured and light, reflecting the Spring sunshine gently warming the conservatory. People made a bit more sense than usual and there was an air of generosity and hope.
Today I took Monica to the East Hospital to be scanned and ‘tattooed’ for the impending Radiotherapy. It is always pleasant to be with Monica and the procedure was not too horrible for her.
I have had a busy week since I last saw Mum, but feeling guilty and strange not going to see her. I feel I have to go in the late morning so that I can do something useful, but I should not be so rigid, if that means waiting a whole week for a free morning.
Anyway, this morning the atmosphere in the home was very different again. The residents were already occupying some of the places in the main dining hall for lunch and the dining conservatory was closed off for a meeting.
I looked around for Mum and a carer told me that Mum wasn’t up yet. I couldn’t quite understand what he was saying as he, like many of the carers, use English as a second language and I wondered why she was still in her room, so I went straight up. I found Mum looking disheveled and crying, half dressed with her pants and trousers around her ankles on the bed. It was clear that someone had been going to change and clean her, but there was nobody else in the room. I showered Mum with greetings and kisses and covered her vulnerability with the quilt. I felt very sad for her lying exposed like that. After a few minutes a carer came into the room with a flannel and towel and introduced herself. She was struggling to turn and clean Mum and rang the buzzer for assistance. As nobody came, she accepted my help and we managed to get her clean. Then came two more helpers and Mum was finally dressed.
They said that Mum had been jerking and shaking so badly that morning that they decided it was safer to leave her in bed, but I urged them to bring her downstairs and let me feed her lunch in the dining room. As they put her into the wheelchair I brushed her lovely, long grey hair and noticed that her teeth were very brown and grubby. On closer inspection I was horrified to see that her tongue was quite black. The carer didn’t know why it was so black either.
Mammy was so weepy again today and seemed to be suffering from deep, unpleasant memories. After food she began to calm a little and I asked her for a Mammy smile. Bless her, she smiled for me. She clearly understands some of what is being done and said around her. I felt so helpless at not being able to alleviate her distress, frustration and sadness…I kiss and stroke her and try to tell her familiar stories about people she loves but it all feels so inadequate sometimes.
The carers decided to leave her in the lounge for a while, but I had errands to do, so I left with a sadness. I didn’t feel that there was anyone I could talk to about Mum and I felt we were quite alone. I’m not blaming the carers, they are warm and friendly people and they work hard at a very difficult job. I just wish I could do more for her myself. I don’t want to leave her for a whole week again.
Today I was enjoying a Bank Holiday lie-in when Josh burst into my room demanding that I get up.
“Sunny Meadows said you’ve got to get up and phone them back!” he announced.
I felt a bit panicked, wondering what was so urgent. Nearly an hour later, I tried the ‘ring-back’ number for the second time and got through. I was told that Mum had eaten her breakfast and then vomited, so they had put her back to bed. She wanted to know whether this had happened before. I got myself ready to go, still felt a bit shaky.
I found Mum ‘as snug as a bug in a rug’ in bed, surrounded by padding and pillows and looking very peaceful. She responded sweetly to my kisses and words and even had giggles today. She drank nearly the whole beaker of tea, so they brought her lunch, which she ate most of. I then borrowed some heavy-duty nail clippers and set to work on her toe nails which were in a terrible state. I gave her a foot massage and then warmed her feet in snugly socks. The finger nails were long and dirty so I attacked them too. Shrapnel flew everywhere from those brittle talons, but I managed to gather most of it. Finally I fixed the CD player and put on some Everly Brothers. Mum was such a sweetheart today and I felt very grateful to be there.
I have been thinking about what to do for Mammy when she loses the ability to swallow…I spoke to Aunty Mary (who is a nurse) about those last days. She was angry with the hospital that her aunt had spent her final days in, as she believes that they gave her extra morphine to finish her off. She told the doctors that they should be wearing black shirts and swastikas! I asked if it wasn’t more cruel to do nothing and she said that you can keep them hydrated, even when they cannot swallow and that this greatly improves their level of comfort. I am wondering whether I should bring Mum home for her final days – to do just that and keep her hydrated and keep her company. I wouldn’t like her to die alone, especially because she is responsive to warmth and hugs. I don’t think I’d want to be left to die alone, even if I am looking forward to being on the other side. I will look into what can be done – I’m sure I could get some carers in to help with the things that I cannot do myself. I know that Simon will support me on whatever decision I do make.
Again this morning I found a message from the night staff at Sunny Meadows. The nurse said that Mum had been having strong spasms and was unresponsive this morning, so they had called out the paramedics, who then decided to take her to A&E at the West Hospital. It sounded a bit over dramatic to me, but it’s always better to be safe than sorry. I asked who had gone with her and she replied that only the paramedics were with her. I know from experience that paramedics are amazing at how they look after you on the way, but then they hand you over…
How is anyone going to be able to communicate with her? Who will feed her or change her? I thought I must have misunderstood the nurse so I phoned back to check. They said it was normal procedure not to send staff with a resident into hospital. I phoned the West Hospital and the doctor there said that she was struggling to find out what the problem was because she didn’t know her history, how she normally behaves or anything. She said she had done some routine tests and I suggested that she do a urinary test too.
Simon took me straight to the West Hospital and I found Mum on a trolley behind a curtain. She had kicked off the blanket and was exposed. She had several blood spots around her wrists and wads of cotton wool, presumably from the blood tests. A doctor came to tell me that they had done some tests and monitoring, but hadn’t been able to get a urine sample – you can’t really squeeze out the pad, so it will be very difficult to do. Mum was very noisy and kept throwing her legs over the sides of the trolley, but she calmed considerably within the first ten minutes of my being there.
She had a strange laughter noise too, which was a bit scary and showed her grubby teeth, but it was good that she was laughing. She was also attempting conversation and responding to things that the doctor and I were saying.
They decided that Mum would be better off at the home in her comfy bed, to which I agreed. Mum was happy to hear she was going home again too. Her mouth and lips were quite dehydrated – but I don’t think she had even had breakfast – so I fetched water and they gave me some pink lolly sponges to moisten her lips. Mum kept trying to eat them, which had us both laughing.
I was glad to have been with her for that experience, which she handled remarkably well. A couple of friendly paramedics came to transfer her to the next trolley and off she went home again.
Today we have a coalition Government with the Conservatives and the Liberal Democrats. Interesting times. Conor is confirmed in his faith and all our wonderful visitors have been and gone.
After seeing Mum today I shall go and rattle a tin for Christian Aid and then take Conor swimming.
When people ask me what I do for a living I say that I am between jobs, but I am really quite busy doing a delightful variety of things and cannot imagine finding time to do a ‘proper job’.
I think Mum appreciates the precious moments that we share together and that it all adds to a certain well-being that takes her beyond what she can remember. She was particularly responsive again today and smelled nice too. Her long, shiny hair looks lovely tied in a ponytail and she was dressed in pink and smiling at the kisses and hugs. She also seemed to be focusing better too – like she was actually trying to look at me.
I have had more thoughts about Mum’s final days. Granny said not to worry as at that stage one is beyond feeling hunger or thirst. Almost like a different state of consciousness, moving up a level more into the spiritual maybe? I was also reading something by Bruce Chatwin (See Notes 6). The author tells that animals and humans mauled and eaten by the big cats do not feel pain. The cat apparently nips the back of the neck and paralyses the victim for lunch – sort of anaesthetised. I am sure God did design us in a such a way that we are preserved from unbearable discomfort. But then I remember giving birth to Joshua and again I’m not so sure… I will talk to the home about it all though and see what they have to say.
*6 Bruce Chatwin “Songlines”