Week Forty-Six

My lovely Mammy and my lovely Nana

I have begun training in what is to be my very own business. It is called ‘PhotoPlus’. I am learning how to prepare films for processing and how to use and look after the processing and printing machines. These all need careful maintenance – they have to be fed, watered and emptied at least once a day and need to be kept clean and warm – not unlike a living being. I will also have to sort all the business side of things and paperwork, bills and legal requirements… I am glad I did some business training when helping Simon.
The business is not nearly as busy as I had hoped, but I am beginning to advertise. I am loving the work and the customers – it seems such a privilege to be a part of people’s worlds like this. Marriages, births, deaths, holidays, anniversaries – all the special moments when people take photographs – I get to see them all and hear the stories behind them. At the moment there are lots of holiday photos and I do feel like I get to travel vicariously to all parts of the world as I scrutinise each photograph to make sure it is perfectly framed and colour-balanced, before printing it. It is very exciting, but scary when the machines do not behave as they should.
I have been buzzing with things I want to talk about when I get home, but there’s often nobody available to listen. Nevertheless, I am happy and keeping on top of housework, boy time and visiting Mammy.
Mum is much the same nowadays – hardly responsive, often seemingly asleep. But she does not seem to be in pain and rarely seems disturbed by the monsters in her head. That at least is good.


Chapter 24

End of Life Pathway


This morning I found a message from Sunny Meadows, telling me that Mum is ‘out of sorts’ with a suspected urinary infection. Poor Mammy, she has always been prone to getting them, but living in a nappy 24/7 it is hardly surprising.
I was battling away with the wet-lab printer, thinking about Mammy and looking forward to sharing some food and time together with Isabelle this evening.
I also keep thinking about Monica – I got such a shock last week to discover that Monica is very poorly now – she is filling up with tumours spreading from the cancer in her groin. She sounded fairly philosophical as she told me how she’s a good age, she has her mind and family around her and how one has to die of something. It is sad that she went through the invasive surgery to take out the cancer and through the excruciating radiotherapy on that tender flesh, only to find that it is all still growing and there is nothing more they can do. As so, as often with the benefit of hindsight, we wish we had taken a different route.


I got another call from Sunny Meadows this afternoon to tell me that Mum does have a urinary infection and that she is dehydrated, as she hasn’t been eating or drinking today. So they have called the paramedics to take her into the West Hospital and give her some IV antibiotics and re-hydrate her again.


I felt distracted trying to continue with the usual tasks and shopping. I didn’t know what to do. I wanted to go to the hospital to see her, but would need to change my plans and postpone our dinner, or maybe I could go to the hospital afterwards?
Isabelle came up with a generous solution – she would come a little earlier, drive me to the hospital and we could eat later. Fantastic! I realised then how uptight I was and was very grateful not to have to drive and do this alone.
“You will need to think about what you want to happen next!” she said cautiously, as we drove out to the hospital. “You will need to communicate it clearly to the doctors too. Have you given this much thought?”
My head started to spin. I didn’t want to think about more than the here-and-now. She was dehydrated and had an infection – the next steps were obvious to me.
“The doctors will have to make their own decisions about the best course of action, unless you tell them differently.” She ventured.
I was wondering what Mum was feeling, if she was thinking anything and what she would want. Mammy cannot communicate anything for herself.


We walked in silence through the blank corridors to her ward. I’d been here a few times before and it made me uncomfortable. Mum had not been accompanied by anyone from Sunny Meadows. She seemed so vulnerable just lying there in a booth, unknown and unknowing. Nobody to speak for her, to explain, to champion her cause. After hugging and kissing her and telling her where she was and why and what we need to do, we waited.
I spoke for Mum to a couple of nurses coming to ask questions. I explained that she was never much more responsive than now, that she cannot eat or drink independently, that she cannot stand, walk or use the toilet. She did look a sorry sight, but I was used to her like that and I know how precious she is.


As the doctor approached, I felt overcome with the sense of responsibility that I had for Mum at that moment. I explained again what Mum is like normally, what the doctor at Sunny Meadows had said – a urinary infection and possibly a chest infection – and that I would like Mum to have a chest x-ray, be re-hydrated with a drip and be put on antibiotics.
“Can I ask a blunt question?” Isabelle throws in with a direct look in her eye.
I panicked inside. This was not in the script. Was I going to be able to respond adequately?
“Do you want the hospital to resuscitate your mother or to let nature take its course?” she asked.
“I want the hospital to give her fluids, antibiotics and to take care of her as they would any patient coming in dehydrated or with a urinary tract infection.” I reiterated, relieved I thought I knew the answer to that one.
“Thank you for letting me know,” the doctor said thoughtfully, “we have to make difficult decisions at times, but we will do what you have asked and will give her 48 hours to respond before considering any other course of action.”


Our two hours car-park was nearly up and the mission accomplished, so I said my goodbyes to Mum, feeling bad as I walked away. She seemed so alone there, but I trusted she would be well cared for and would hopefully respond quickly to some fluid and antibiotics. I would come back the following day and stay as long as possible. As we walked back along the corridors, looking forward to some dinner, I reluctantly mulled over scenarios of what the doctors might have done if there was nobody there to speak for Mammy?
Both deep in thought, I broke the spell as we went outside towards the car park.
“Thank you for coming with me, Isabelle. I would have been hours waiting for the doctor if you hadn’t been there.”
“Why do you want to keep her here?” she quizzed.
“Well, because they can’t do the intravenous stuff at the home. I won’t let her stay longer than necessary. As soon as she responds and can eat and drink again, she can go back home!”
But that isn’t what she meant.
“I mean, why do you want her to stay in this life? She has no quality of life at all. Naturally she would die now if you didn’t intervene and she could go peacefully. If she recovers from this, she will go back to the home and have to come in again for the next thing. She will continue to suffer. You had the power to make that choice… We are all different!” she added, as if to excuse my poor choices.
I was shocked at Isabelle’s perspective. I thought she had been urging me to make it clear to the hospital that I did not want them to just leave her to die. How could I play God and tell them when to let her die? Don’t doctors have to do all they can to save life? Is the alternative not euthanasia?


I didn’t know how to handle these thoughts. I wanted to change the subject and make my unpleasant thoughts and confusion go away.
We ate our supper with an awkwardness. I felt accused of doing wrong to my mother, of making a bad decision, of having my head in the sand. It was true that I wanted my head buried there. I wanted reality to be different. I don’t want her to be ill and die.
Isabelle may well be right, but it felt wrong to me. I did not feel I could make such a decision on her behalf… I felt exhausted and drained with the responsibility and as I went to answer the phone to Simon, Isabelle went home.


My sleep last night was disturbed and I was glad that Sunday had come. I went to church needing to find my refuge.
I feel anxious, jittery and rather spaced out. I need to go back to the hospital. Conor and Josh both want lifts and I want to serve them. They too are precious and I need them to know that they are. I wish Simon were home to help me.
I found Mum with a needle in her arm, allowing fluids to infuse her in a slow steady drip. The oxygen tube was still at her nose, making it feel so cold to the touch as I kissed her lovely face. She looked so much better today and my anxiety and confusion were dispelled. I texted Debbie with the good news and felt positive again. Another 24 hours of this and she would be well again. I gave myself up to five hours at the car park, so I enjoyed my time with Mammy.

Week Forty-Four

Such a great smile!

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”

Week Forty-Two

I don’t think I ever really knew what she was thinking or feeling,she held her cards close…

Sunday evening I got a message to say that Mum had fallen out of bed and landed on her head. The call came about 8pm, so I have been wondering…If she gets up at 4pm after her post-lunch nap, has her supper and then joins the others in the lounge, how could she be found on the floor of her bedroom before 8pm? Had they not brought her down for supper? Or had she had the accident earlier in the day, but only just reported it? I’m also not sure how she could have fallen out of bed. I usually find her cocooned by pillows, with the ‘cot-sides’ up as well. If she had struggled to get out of that, she must have been left unattended for a very long time. I have not seen Mum make that amount of effort or movement for many months. Apparently she has been checked over and she is okay, but I would like to ask a few questions.

***

I felt deflated today. Mum was in the lounge again, but her eyes were closed and I got no response from her at all. No talking, no walking, only tears.

I was able to stay and feed her her lunch – it seems she only gets pureed food now. I must find out whether that is for ease of the staff feeding her. If it is, I could request proper food on the days that I feed her myself.

I asked about the accident – it seems that they do get her up for supper at 4pm, but then they take her straight back to her room afterwards. That means she spends about 18 hours a day in bed. I don’t think that can be good for her, but I do appreciate that it is difficult for them to manage her if she’s constantly sliding onto the floor. I’m sure there must be some chairs that can support her better and keep her in the land of the living…I hope someone puts her music on for her when she’s in her room for so long…Apparently there is now ‘no way’ that she can fall out of the bed again.

***

Saturdays seem to be the best days for visiting Mum. Today we had success with a walk-about and a certain amount of joy. I found her nearly on the floor when I arrived, but she hardly slipped at all whilst I was there. She does cry a lot. Sometimes with joy, other times with pain, fear, sadness, nostalgia… even some seeming recognition of something provokes a tearful response. It makes me sad when my own words and endearments cause her to sob. In some inexplicable way she seemed to be glad of my company today.

I spoke again with ‘commentary Kate’ who remembered Mum’s arrival. She said how Mum ‘can’t seem to bend in the middle’ and could really do with a different sort of chair. It’s satisfying to be able to say hello to the residents and offer them a smile and company.

***

Kate is right, Mum doesn’t ‘bend in the middle’. She was crying a lot and nearly on the floor again today. Also there were what seemed like cries of pain, but she cannot tell me where the pain is, so I feel quite helpless.

Last week I asked if it was her head that hurt and she said it was. It is so difficult to diagnose anything because she cannot communicate reliably.

I mentioned it to the ward nurse and she said she’d ask the doctor to check her over and maybe leave a prescription for some paracetamol. I asked them to check that she wasn’t sore from the incontinence pads and to check in case of a urinary infection, which she is prone to.

I did get Mum to walk a bit today, but she stopped a couple of times and made as if to sit down. Fortunately on both occasions I was able to pull a chair underneath her just in time. I fed her the pureed meal and blancmange again, whilst looking enviously at Steven’s braised steak and vegetables, followed by apple pie and custard. I really must remember to ask about the food.

Steven and his wife are both over 90 and have been married for 69 years. She comes every day to see him and is so lively and encouraging. It is so much more heart-breaking when the sufferer is aware of the suffering. I am not sure whether Mum is now suffering or not. Whether she suffers in silence, trapped inside her head and body or whether she just exists in each moment oblivious of the last, I’ll never know. But I know she sobs a lot and that makes me sad, because I don’t know how to help.

***

Mum looked particularly pretty, freshly bathed and fluffy, but very grumpy today. I couldn’t get her to walk – I asked and she said no – and seemed to mean it.

I asked staff about the doctor – apparently Mum has nothing obviously wrong, but she still seems to be in discomfort. I also asked about the pureed dinners. The nurse looked through her notes to find that Mum came to Sunny Meadows with instructions from the hospital to have ‘soft’ meals. We talked it through and I requested proper food. Thankfully, I was then able to feed Mum braised steak, carrots, brussels, mash and gravy, followed by rhubarb crumble and custard. Yummy. I could tell she was enjoying each morsel as I named it and put it in her mouth. Some success today!

On my way out I saw the manager, who is clearly aware of all the issues. She said they had tried a beanbag for Mum to sit in, but that it didn’t work. I asked about the harnesses that I remember seeing at Gold Acre. She has never seen them but will look into it. It is a problem that needs solving as it causes Mum and the staff an unnecessary amount of stress. I also managed to manicure Mum’s sharp claws, which do get sort of locked into one’s flesh!

Monica wants to come with me next time. I went to see her today, after seeing Mum. She has her son and his partner staying to look after her, so that is good. She was in some discomfort, which is to be expected after such surgery, but she is much more positive about it all now. She told me lots of stories about my family too – on the Haynes’ side. I know I’ve heard much of this from her before, but I don’t seem to retain the information long enough to absorb it properly. I love Aunty Monica very much.

***

The NHS Involvement Strategy Group do not meet very often, but the aim of the group is, as the name suggests, to ensure greater involvement between all the stakeholders in the NHS service. That should mean making sure that views and opinions of the service users, carers and staff at all levels are heard and taken real note of in the policies and practice that then ensue.

I am still thinking about what a carer shared with me at the last NHS Involvement Strategy meeting – he has been caring for his wife at home throughout her journey into dementia. He had to give up work four years ago to do this properly, but does have the support of other carers coming in to help.

He has been seeking advice on what happens at the end, having understood that with Alzheimer’s, the sufferer loses the ability to swallow. Apparently, life is not prolonged by feeding through a drip or peg, so the person is left to starve to death. He said it takes about nine days. He was asking if, when the time came, he could give his wife something to end her life painlessly and not have to watch her starve to death. He reasoned that if you allowed a dog to starve to death, you would be imprisoned. He didn’t get a favourable reply from the medics and the thought of watching her starve is clearly bothering the poor man.

It is such a tough question though. Can you ever condone putting someone out of their misery/ending their suffering/playing God? Does a dying person get the grace they need to cope? Do they drift into euphoria with the hunger as they approach the gates of heaven? I don’t know. I suspect that dying is not as bad as we fear. I am not afraid to die. I am afraid of unbearable, torturous pain, but not afraid of death. I look forward to the resurrection, to being with God and understanding some of the immense mysteries that life on earth has kept veiled…I’m not in any hurry to leave this life either – it’s such a beautiful world and I love so many precious souls here. I don’t think I’ve yet done as much as I might either. None of us is indispensable, but there is a task just for me and I need to find it and get on with it.