This is the first of three parts of the gospel according to Matthew. This part contains an introduction and the first 11 chapters, visually illustrated by some great works of art, created throughout the centuries by faithful followers, inspired to depict the glory of God and the wonder of the gospel in a variety of delightful paintings and images (some famous and some obscure). Dawn is reading from ‘the Truth’ New Testament (translation by Colin Urquhart). Parts 2 and 3 will follow shortly, God willing!
I’ve been poorly for the last week with headaches, coughing and just so weak. Obviously I stayed out of the Home for that reason – definitely not something to pass around old folk.
I was missing Mum, so phoned to explain and Susan (a key-worker), told me that Mum had had two visitors. I was desperate to know who they were, so she checked the visitors’ book. It was Mum’s sister, Julia, and her cousin Pauline. They found her unresponsive, thin and sleepy, but I think Julia was glad to have gone. I haven’t heard from Pauline. I felt a bit jealous, but I have to wait until I am better.
When I finally went back to Mum, just over a week later, it was school holidays and Conor came with me.
Mum has a urinary infection and has been put on antibiotics. Conor was great with Nana and managed to give her a few hugs and kisses without being too concerned about her lack of response. She seemed especially hot, but with the antibiotics and the paracetamol she will be fine. She ate her dinner as slowly and steadily as usual and Conor seemed to enjoy the general interest of the place. I couldn’t keep Mum’s head from flopping onto the table and my left arm is aching now, having used it to keep Mum’s head propped up whilst feeding her.
I have arranged a proper meeting with Susan to talk about end of life issues on Friday morning.
Susan was as reassuring as always (I was delighted to read that she got a ‘nurse of the year’ award) and she had some forms for me to go through, as we sat out in the sunshine. She talked me through the resuscitation question that I had been through before with St Peter’s Wing.
I don’t have a say in the matter still, but fortunately I agree with the policy in principle – i.e: if she is dying, do not resuscitate, start invasive surgery or put on life support; but any other accident or sickness should be dealt with as thoroughly as with anyone else. It is a ‘best interests’ principle.
The questions on the form are about what Mum would wish if she should be dying – elements of care that are important and what she would and would not like to happen. I’ll try to rope Debbie in to help me fill this one in – or at least to check that she agrees with what I write.
I asked about what would happen from the Home’s perspective if Mum were dying. I don’t want Mum to die in hospital, if at all possible and I do not want her to die alone. They said that I can camp down in her room if it seemed best to me. They can’t do intravenous fluids, as they are a nursing home – if they were a residential home they would be allowed to. How loopy is that?
I have decided that it would not be good to bring Mum home for her final days – it would be too traumatic for her and not as comfortable – I just don’t have the resources. I’ll just move in there instead. I can hold her hand, read her scriptures, play her music and keep her lips moist. They cannot tell me how or when it will be… but they think they will know from experience when the time is near… Death is all such a mystery.
At the end of the meeting I didn’t feel over emotional at all. I felt much clearer and more at peace.
We came back indoors and I sat with Mum and Annie (another resident). Fish and chip day on Friday – not the same as chip-shop chips, but good. Mum was not quite so floppy and the strain on my arm much less. Annie hardly stopped talking; she’s like a child in her simplicity and demanding nature. I managed to distract her from banging everything by simply engaging her in conversation, but it meant that Mum didn’t get much out of me. I don’t think that matters, as Mum does listen and it is probably better her hearing a conversation than listening to the banging, or to my one sided ‘conversation’ aimed at her. George and Cecil sat together on the next table so I engaged them too and it was suddenly quite sociable and pleasant in the conservatory.
I sat with George and Mum at lunch again today. Mum was so sweet and seemed very happy. I didn’t want to leave her. She was sitting up more and opened her eyes from time to time. She was also squeezing my hand tenderly, which felt good. Sometimes I feel particularly protective of Mum and very close – this was one of those days.
I have spoken to Debbie about the ‘end of life’ forms and filled them in as well as I can.
I decided to finally go to the doctor and see if they can prescribe me something to get me through this current depression. My back has also been very painful and I just want to lie down, read or sleep. I am finding Simon very difficult too – he is just not ‘available’ most of the time, and rarely emotionally available. I have been feeling very alone and needing some company and some emotional support, but not finding any. I did not want to resort to medication, but I feel I shall have to give it a try.
It was not a good idea after all and has made me worse. I was in bed for nearly a week with some visits, chats and cuddles from the boys and an occasional “Can I get you anything?” from Simon. I felt like I might never get up again. Isabelle then came to see me and she was very cross. She went straight to make me another appointment and took away the medication, which she thought had made me worse. My back was in agony, I was feeling sick and my skin was peeling off my upper body. The doctor said I should rest from the medication and then he would try me on something different.
Mum doesn’t slide out of her chair so much any more. She has a new trick instead – now she flops her head into her dinner. Sometimes she is amused, but of course it is also very messy. She seems more alert too, which can mean that she is more responsive but sometimes she shouts and gets cross with everybody.
I took Monica again today and we had a much better time. The other residents are very entertaining and responsive to visitors, so it livens up the atmosphere with someone as easy going as Monica. Mum was flopping her head into her food again but was alert. After seeing Mum we stopped at a pub in Cotgrave for a carvery lunch. It was lovely to be out doing something relaxing with Monica and not just being in hospitals and meetings. Monica hardly complains about her own health, but I don’t think she is well yet.
Simon has made more of an effort recently and we are spending more time together again. I think I am better on this new medication too – much lighter than I was.
Mum has been fun of late. Yesterday I got her to stand up twice and managed to walk her into the lift to go back upstairs. She was tired out after that and flopped like a rag-doll into her wheel-chair. She was in great humour though.
Debbie, on the other hand, is very stressed out at the moment and is struggling. At Camp I was sending encouraging texts, but suddenly decided that I should make the effort to go up to Orkney and spend some real time with her. She is delighted. Simon won’t be coming, but he is letting me take the car. I am excited about the trip.
I am also very excited about a new business prospect, as we desperately need an income. When we returned from Camp, I took my films down to the photo shop in Netherfield for processing. The owner had a notice in the window: “Business for sale – Enquiries Within”, so I went in… She has another business and so is hoping to sell the photo shop. We talked and I have been thinking hard… I will need to find £12,500, but Simon says he does not have any money. Hannah works there and wants to continue working 2 days a week – that would give me time to still see Mum and do stuff at home. The owner would train me up before she left….
I have to give this a go. I can just about manage to scrape the money together to buy the business and get me started. Simon does not seem as excited as I am. He has made it clear again that he does not want to be a house-husband, but at the moment he is always in his office or shed, the boys do their own thing… I love photography and I could be of service in the heart of the community. And I would still be home to make dinners and clean up and still be able to see Mum. I am very excited and nervous. As soon as I get back from Orkney, I will start my training at the shop so that I can learn as much as possible in the 3 weeks before the owner leaves.
The trip to Orkney was fantastic in so many ways. Debbie is living in a beautiful bungalow just 10 minutes from the heart of Kirkwall. She is continuing her trade as a tiler and is rapidly making a good name for herself there. We spent lots of time together, talking and looking at old photos and memories. She is pleased for me in my new business venture.
We also went over to Graemsay. Our ‘Clett’ looks great since its face-lift and now houses one very happy tenant. We visited Dad’s grave and all the inhabitants of Graemsay, who were eager to hear news of Mammy. They really love her and we shed a few tears there.
I did lots of sight-seeing with the boys too. We went round all the amazing ancient monuments and had great fun driving over sand-dunes and playing on some remote beaches. The boys kept shouting “Fun Mum” as we drove happily about. It was such a well-needed break and great family time.
I came back armed with so much to share with Mammy, but she was not able to understand a word of it. Mammy no longer knows anything about Orkney and her life up there. Nevertheless, I passed on the greetings and love as requested by the inhabitants of what was once ‘her island’.
There have been significant changes for Mum since I’ve been away. She is now a permanent resident of the upstairs ‘nursing’ part of the home. The lounge there is much quieter than the one downstairs and she no longer has to use the lift. Her super-chair is there too – so she is usually to be found reclining in that, in the corner of the lounge. There are some very sweet souls in there.
Monica and Wendy have both been to visit whilst I was away and they also think that she looks very comfortable. Mammy doesn’t say much at all now. She smiles, cries, frowns, grumbles and giggles, but not much else. She still seems to love chocolate, love music, but to dislike other noise.
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”
Monica seems to be coping well. When we got to Mum’s I introduced Monica to Kate, who I’m becoming very fond of. Mum was sleeping soundly in a super new lounge chair. The chair was on loan and certainly Mum looked very comfortable. One of the carers said she had managed to fall out of it, but maybe I misunderstood? Anyhow, we were tickling Mum, talking to her, kissing her, shaking her… but nothing would rouse her.
Monica and I had a chat, but I felt I’d cheated Monica somehow. Mum woke to be fed, but not enough to really acknowledge anyone around her. I was sad not to be able to get her walking again, but glad that the chair seems to be saving everyone the distress caused by Mum sliding onto the floor.
I saw Mum again today and she was much the same – very sleepy and away from the world. I feel like she has given up, but it may just be the natural result of the ‘lights all going out’ in the brain.
Apparently having a harness is frowned upon in homes – understandably seen as restraint and loss of freedom, so the super-chair has, I believe, been ordered instead. They seem to be doing their best to solve this problem.
In a couple of weeks the Social Worker will be doing a review of Mum’s situation and so far my own impression of Sunny Meadows is positive. I will meet him there on Thursday 15th – two days after Mum’s birthday.
Change is life. There was a sadness about the dining room today. Mum and Steven were at the table and Steven was cross. No Jude. Mum was fast asleep and slipping out of the wheel chair again. Steven was frustrated and didn’t want to eat his dinner. Jude came looking frazzled and worried, because she was late. They are so lovely; they kiss and declare their love for one another and she keeps him in line in a very kind way. She soothes him with a reminder that a gentleman is always polite and he need only say thank you for the kindness of others.
They are an inspiration, fighting valiantly this trial. Jude said that Steven was the first man to ever fly over the North Pole. She is worried that they might move Steven into the other part of the home – the Challenging Behaviour Unit, where Mammy was originally going to be. There was dignity and treasure in the sadness, but it all felt so heavy.
On Saturday Mum was already in the dining room, alone, sleeping. Her face looked terrible – a huge swelling bulged over her right eye and was quite black. There was some redness under the eye too, but it looked as if she had taken one neat bash.
I looked around with a question mark on my face to the carers around, but they were all busy. The Manager was there, doing the ‘meds’ and eventually I got her attention. She came over looking shocked at the sight of Mum, as if I had just whacked her myself. I asked what had happened, but she didn’t know. Nobody knew. “It wasn’t like that at breakfast” was all I got, but surely the person bringing Mum to the dining room must have noticed.
I asked for an ice-pack and some paracetamol, but they had no ice-packs – the best they could do was a wet flannel. A member of staff then brought two paracetamol capsules for Mum and knowing that Mum would chew the foul tasting things, I asked if she could have liquid paracetamol instead? Apparently not without a prescription. I watched her screw up her upper lip as she slowly chewed the capsules one by one. Fortunately she still had dinner left to wash away the nasty taste.
I wondered whether she could still feel pain – given that she can’t have made much of a fuss about whatever had hit her eye – so, as I held the wet flannel gently on her eye, I tried to pluck one of the bristles from her chin. She yelped. So she would have felt the bump to the eye! Successful experiment, but unsuccessful in removing the whisker. Apart from the slow chewing and breathing she was as if asleep and all felt quiet and lonely.
“No Steven today?” I asked a passing carer.
“No, he’s gone upstairs.” came the reply.
Their leaving us is a loss. As the carer said, once the funding bodies have made their decisions you have to comply otherwise you lose the funding. It seems strange that one of the most ‘with it’ of the residents gets moved to the CBU. I don’t know the full story, but again it seems to have been a decision made without the consent of the carer or the ‘service user’.
Monica sounds much better. The stitches have been removed and she goes for radio-therapy in a few weeks.
Simon came with me to see Mum today, for the first time in nearly two years.
She had birthday cards all around and seemed to respond a little as I read them all to her. She appeared uncomfortable again, though a bit more awake. She was able to give some possibly appropriate yes/no answers to questions and indicated that she was in pain. Her eye was very purple and still a little swollen, so I requested more paracetamol. Shortly afterwards a doctor introduced himself and said he would prescribe her something soluble. Good.
Simon and I tried to get Mum up and walking, but she wouldn’t open her eyes or stand today. I hate seeing Mum so distressed and tearful and be unable to help in any way. I kept wiping her tears and telling her that she is safe and loved and that all is well now, but I don’t know whether all is well. Maybe she still has a head full of monsters? Or questions and feelings that she wants to talk about and can’t? Maybe she is in terrible physical pain or discomfort inside? I just do not know. I fed Mum whilst Simon rubbed her back and imitated a goldfish, like a parent feeding a toddler. Mum still enjoys her food and it does seem to be always hot, tasty and nutritious.
I asked about popping up to visit Jude and Steven, but they told me I shouldn’t go up there as the residents can be unpredictable and violent. They didn’t say that when I went to look around initially, with a view to putting Mum there.
Simon was glad to have seen Mum again. Obviously he noticed a huge change in her.
Today I had the review at Sunny Meadows with the Social Worker and one of the senior nurses. The Social Worker outlined the purpose of the meeting, which was to review Mum’s care and make sure that we are all happy with the situation and, if all is well, for him to close the case as far as he is concerned.
The nurse representing Sunny Meadows said that they were satisfied that they could provide for Mum’s needs and I expressed how happy I was that they seemed to be addressing the challenges well. I mentioned the chair, which I understood to be on order and asked if it would be possible for Mum to have a bedroom on the ground floor if one were to become available. They promised to look into it, as it would make Mum’s afternoon naps less isolated. I mentioned the mysterious eye too, with no response. I am thankful that Sunny Meadows believe they are willing and able to meet Mum’s needs.
The Social Worker has also reassured me that I can call on him if normal channels of communication fail and I need help. I am grateful for the Social Worker’s help over these two years. He has always had Mum’s best interest at heart.
We then went to see Mum and her now rich-purple-and-yellow eye. Again her eyes were closed but I did get some sweet smiles.
I sometimes think about how I will feel when she does die. Part of me will be happy for her to be free of the limitations and frustrations of her physical disability and mind. I will miss her. It won’t be like missing a mum – I dealt with that a long time ago – it will be like losing a very treasured part of my life. I feel such tenderness towards her nowadays.
She will go at the time she is given and I believe we will get the grace to deal with her loss.
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.