Week Forty-Nine

Epilogue

Chapter 25

I have contacted the vicar up at St John’s and he gave me good advice. He will come later in the week to discuss plans for the service. I have an appointment later at the Cooperative Funeral Care, so it was good to talk to the vicar first. He said that we don’t need to split the service between the church and crematorium – in fact there is no need for us to accompany the coffin to the crematorium at all. That makes sense as we might lose guests that way and I want as many as possible to come back to my house afterwards, to celebrate Mum’s life over food and drinks.

I have to wait another day to go to the Bereavement Centre and they have made an appointment for me to go straight afterwards to register the death. Isabelle has offered to do all that with me. I feel like I haven’t seen her in a long time.

***

The appointment at the Coop was straightforward as we already know what we want to do. The funeral is booked for Friday 8th April at 3pm. I can hardly believe that Mum is going to have her funeral on the anniversary of Daddy’s death. She will like that. I’m sure they are laughing about it in heaven already. The Coop are expensive – it will cost over £2000 for them to make the arrangements. Never mind, it is sorted at least.

The Bereavement Centre gave me a bit of a shock today. I met with a lady to discuss and sign for the brain donation and she asked me if I wanted to see the death certificate. I did. It said – ‘Cause of death: Septicaemia caused by a UTI’.

“She didn’t die of a UTI, she died of brain failure, according to the consultant”, I protested. “I would have understood if it said that she’d died of dehydration or starvation, but not septicaemia!!”

Did it matter, I reasoned to myself, but somehow it did. I fought back the tears.

“If she was dying of an infection, why was she not treated for it in the normal way? Why did the consultant tell me she was dying of brain failure?”

It all seems academic, but I felt very confused and like I’d been cheated – like we had cheated Mammy and not given her the correct treatment. Had we had let her die unnecessarily? I was crying in my need to understand. The consultant was sent for and he did his best to explain why it was written as it was, but I am still not convinced. There seems little point in asking them to alter it, we cannot alter anything else.

I arranged to donate Mum’s brain to research, as I know Mum wanted to be useful and she certainly doesn’t need it any more. If it can help to discover more about this horrid disease and how to prevent or cure it, then this last act will be invaluable.

Nevertheless, I left feeling disgruntled and in just enough time to get to Shakespeare Street for our midday appointment.

With that paperwork done, we went back to Isabelle’s for a quick lunch and she dropped me back at the shop. My head is swimming with thoughts and lists of things to do. I caught up with some work and I bought the Nottingham Evening Post to read the Notice of Death I had sent in.

HAYNES — Avril. Passed peacefully on 28th March aged 64. Beloved Mammy to Debbie and Dawn, sister to Julia, Nana and friend. We celebrate your life thanking God for all the precious moments. Enjoy the welcome into Glory. Funeral service 3pm on Friday 8th April at St John’s church Oakdale Road. –

***

I don’t really know what I am doing. I’m not much wiser after meeting the vicar either. It seems we can pretty much do the service however we want. He’s going to contact the organist to request he plays for us; Josh is going to learn the songs on the guitar too – Mammy liked to play guitar at church, so it will be fitting to have Josh play ‘Amazing Grace’ for her.

I think I’d like to go with the Psalm I was given in hospital – Psalm 116 – but I will need to cut it down a little. I want to write a tribute too and I have asked Debbie, Julia, Wendy and Monica to write tributes. None of them feel brave enough to read though, but I will. Isabelle has agreed to read the Scriptures.

Wendy has sent me an article that Mammy herself wrote for her school reunion magazine in 1996, a year after Daddy’s death. I think I would like to read that at the funeral – to let Mum give her version of her story. It is amazingly concise to say it spans over 30 years and expresses beautifully her rose-tinted outlook. It was her story just before the Alzheimer’s began to take a hold, just after her ‘world fell apart… when Dick died aged 49’. I will include the order of service and any written tributes in the last appendix.

I have had an overwhelming number of sympathy cards – amazing how quickly news travels. I hope that these people will come to the funeral and stay to share their memories.

I have also been to see Monica finally. She is in pain and has an enormous log/leg which inhibits her movement because she cannot bend either the knee or the hip. This is something to do with the lymphatic system secreting. She needs to get the stuff drained, but keeps missing the appointments. It was good to see her and share more memories and stories – I hope that she does write some of them down to share at the funeral. Monica seems to think that she will be following shortly behind Mammy and commented on how they began a life together on Graemsay all those years ago and now will be ending their lives together too.

I got a call today from another vicar – apparently the incumbent vicar is unwell and has asked her to step in and conduct the funeral service, so I have had to arrange another meeting with her.

Debbie should be down again early next week and have time to help with the final arrangements. I have ordered the flowers to go on the coffin, but I want to pick some flowers from my garden too, as I want Mum to have wall-flowers, daffodils and forget-me-nots – scented garden flowers that Mum would have admired and said ‘They don’t look real, do they?’

There is a lot of paperwork, arrangements and decisions to be made and lots of expense. I am glad that Debbie and I had enough time to discuss much of this together. I have bought a cherry-wood coffin and still have to take in an outfit for Mum’s body to wear. I have decided that she should wear the cerise suit that she wore to my wedding.

Mammy in her outfit for my wedding and her funeral

The day before the funeral, Mum’s body will be available for viewing in the chapel of rest. I am not sure that I want to go there, but I will if somebody else would like to go. The boys don’t want to go.

We have decided that the majority of Mum’s ashes will be buried alongside Daddy’s, as this was always her request, but we are going to reserve some to be scattered or buried up at St John’s and her name remembered alongside her Mum and Dad’s on the memorial vase. Debbie will arrange the Graemsay burial for the Summer. I will arrange for the rest to go up to St John’s sometime after that.

***

My cousin has said that she would like to go see Mum’s body and would like me to go with her, so I will. It turns out that Debbie is going to the Chapel of Rest with Rachel, James and baby Skye. As it happens, Conor has now decided to go with them.

Well, that was not how I expected it to be. I met with my cousin at the Funeral Parlour at 2pm. We had a bit of a wait and a good laugh as the people in the Parlour couldn’t find Mum. My cousin commented that she can’t have gone anywhere… It was farcical and we couldn’t stop giggling about it.

I was a bit nervous, but remembered how it was seeing Daddy’s dead body and how obvious it was that he was no longer in it. So I thought I was prepared, especially as I had also seen her as she died; but she looked very different. She did not look like Mammy at all. Perhaps it was because they had removed her brain and had to re-stuff it with something? Neither of us really wanted to stay long, so we said another farewell and went to the pub for refreshments in the glorious sunshine. I could easily have stayed there, enjoying the company and another pint, but I still had much to do for the morrow.

I really hope it all goes well and I don’t crumble. Debbie is sorting the buffet for the wake, which is to be held at the Elwes Arms, not far from the church. I still need to make sure that photos, slide show, music and everything else is ready and working properly.

***

Yesterday was Mum’s funeral and Daddy’s anniversary. Conor gave out the order of service leaflets and Alzheimer’s envelopes to the guests at the church. The projector was missing a cable, so that didn’t work, although right at the end, Conor found a cable and began to show the photos as the guests were chatting and dispersing.

There was a good turnout – only Monica, Tony and the Orkney friends were missing. Monica’s sons came on her behalf though and we read one of Tony’s poems as his tribute for Mum. Everybody sang and spoke beautifully; I read two tributes and Julia managed to read what she had written for Mum. Josh played ‘Amazing Grace’ on the guitar, accompanied by the church pianist. We had Elvis’ version of ‘Amazing Grace’ for the entrance and Everly Brothers “All I have to do is Dream” for the exit. The other song that we sang was “Morning has Broken”, as that was Mum’s favourite song when I was little and Mum taught me to sing it, word for word.

It was great to finally relax a little and enjoy the company of family and friends, as we all shared happy memories of Mammy’s life. After the pub – which coincidently was ‘opened’ by Simon’s Great relative and hence carries Granny’s maiden name – we went back home and continued our celebration, with more food, drinks, music and the complete slide show of photographs of Mum. We talked and laughed long into the night. I think we gave her a good send-off. I could feel her finally smiling and at rest, but sure she was having a good jive too. I really missed Monica though and want to see her very soon.

Mammy home at last!

Week Forty-Eight

Mammy not long into this world and cute as…. RIP Avril.

The hospital chaplain visited us again today and has found out about brain donations. It is very straight-forward apparently – I just need to sign a form when I go to get the death certificate at the hospital’s bereavement centre. That’s good. I wonder what else I might have forgotten.

***

Debbie is heading home again tomorrow morning. So tonight – Friday – she is going to my house to get a good sleep before her journey. I can’t believe Mammy is still here. I wonder how her body keeps going with no water or food for nearly a week?

This morning Mum’s nose was frosted with white crystals (I had to take a photograph). Most of the time Mammy is peaceful, sometimes with eyes closed, sometimes open. Always her mouth is open and I use the pink lolly-sponges to moisten around her gums and tongue so they don’t crack up.

Yesterday they gave me some saliva gel to use instead of water and it seems more comfortable. It is strange just watching and waiting, knowing that we can do nothing but be here with her. Mammy doesn’t respond to voices now, not even deep, manly voices, but I hope she knows we are here and is comforted by that.

What if she’s just waiting to be left alone so that she can die in peace? I’ll warn her from now on when I leave the room, in case she wants to slip quietly away. Maybe I sound very cold about it all, but I feel very much at peace here and privileged to spend this momentous vigil with her as she passes into her heavenly inheritance. I hope she is not afraid to die, so I keep reassuring her from scripture.

Occasionally I am overcome with emotion and weep beside her, but that is when I think she is afraid or in discomfort. I have had to request some supplementary shots of morphine today as she seems to be moaning and contorting her body. I don’t want her to have any more pain now.

Debbie said her tearful farewells last night, reluctant to go but very glad to have shared this time with Mum. I am grateful to have had Debbie here for these few days too. It has been so good to share this together and have the necessary space to discuss what we want to happen next. It has also allowed me two nights with my family and in my own bed.

I must say that I am becoming a little weary of these walls, noises, bleeps and long corridors, but I don’t resent them.

Julia has come to the hospital after work every day to see Mum. I have appreciated that too. It feels good to have some family support.

Simon has done sterling work keeping everything together at home and I am doing what I want to do for Mum, for as long as it takes. I couldn’t even consider not being here with Mum now.

I want to see her when she sees Jesus coming to take her home. I am spending a lot of time reading the scriptures aloud to Mammy and have written down a list of possible verses to read at the funeral. I hope that someone will read from the Bible to me when I can no longer do it for myself. Monica has been too poorly to come see Mum – I know she would have done had she been able.

***

The ward sister from Sunny Meadows phoned me at the hospital today to ask when Mammy is coming home. It was hard telling her that she is not coming home and is ‘on the end of life pathway’. I don’t like that expression too much, but can’t think of a better one for them to use. The ward sister seemed shocked and it set me to doubting and questioning everything again. I did ask her about their decision to send Mum into hospital – what had precipitated it, why she hadn’t been eating or drinking and for how long… but I don’t recall how she responded. I am left with many questions. Mammy was admitted with a urinary tract infection and dehydration and now she is on the ‘end of life pathway’. The ward sister’s shock has reawakened my own.

***

Sunday morning is here again and this is church for me at this moment. Mammy seems to be weaker today and I get the feeling that turning her and changing her is causing her unnecessary stress. She is no longer passing any waste products and she doesn’t seem to be getting any bed sores, so I’m sure they can leave her be. I’m sure they know better though and I don’t want to be critical of the nurses as they do such an amazing job. She does have an enormous blister on her heel though, so we have put a pillow under her calf to prevent it rubbing or bursting.

The last couple of days I keep thinking that perhaps Mammy is just not ready to die. I keep wanting to give her some water to drink and feel like she would then just get up and walk home with me. I also wish I had thought to bring Mum home anyway, to die there instead of spending her last days in hospital. I’m not beating myself up about it, as I don’t think Mum knows where she is and she does have familiar music and voices around her all the time. Maybe it is best as it is. It is as if her body, mind and soul have gone, but all that remains is her spirit. So my spirit is staying to commune until hers is ready to depart. I really did not expect her to stay this long though – she is such a tough cookie and physically there is not much wrong with her. But I can’t help thinking that the decision to put her ‘on the end of life pathway’ was maybe premature. I suppose it is natural to doubt one’s decisions and choices?

I think I will write down my questions and see if I can speak to the consultant if he’s around tomorrow, because now I cannot remember what he said to me and Julia last Monday.

***

Monday was a week ago now and even the nurses seem to be amazed that Mammy is still in the land of the living. I hope I see the consultant today and hope I am brave enough to ask my questions. I don’t want him to think that I am blaming him for anything. I don’t know how I feel today. I don’t know how Mum feels either. The nurses say that she will not be aware of anything now, but they also say that the sense of hearing is the last to go, so I must stay positive and reassure her at all times.

Question 1 – Why did you think she was ready to die?

Question 2 – What do you think she is dying of?

Question 3 – Do you think you gave enough time for the antibiotics and fluids to work?

Question 4 – What were the crystals on her nose?

Debbie got home safely last night. I have read most of the New Testament again since being in here – it truly is the most amazing book.

The consultant seemed surprised to see us still here too. His answer is that ultimately he knew from years of experience that Mum was ready to die and that to let her go naturally was the best and kindest thing to do. I think Isabelle knew that too. He also says that she is dying of ‘brain failure’ – that the Alzheimer’s has killed her brain. I mentioned how I wished I had been able to take her home and he apologised for not suggesting it to me. He was very understanding and said that he welcomes these questions as they keep him in the real here-and-now and keep him checking himself to make sure he doesn’t lose touch with the most important aspect of his job, which is people’s lives.

I showed the consultant the photo I took of the crystals on Mum’s nose and he said that is more likely to be urethra, as it does excrete in crystalline form. Urethra is what the liver gives off when it has failed – it is also supposed to make you feel high and happy.

So I am feeling a bit better again now, but very tired. Julia was also feeling ‘out of sorts’ today. She hasn’t missed one day coming to see Mum in hospital yet. Each day you think it is going to be her last one.

***

Well, today is Mammy’s last day on earth and the beginning of her life in heaven. Today, the 28th March at 7.30pm she slipped away. And I nearly missed it. Joshua arrived unexpectedly and flopped down on my mattress, saying that he was missing me and didn’t feel right. I was still holding Mum’s hand, but talking to Josh, and Mammy gasped and stopped breathing. We both stared at her to see if there was any movement, any pulse, any sign. After what seemed like a couple of minutes, Josh suggested he should go and get a nurse.

While he went I hugged Mum and held her tight, feeling sort of dazed. Suddenly she took such a loud gasp of breath right in my ear that I jumped. Two nurses came in and looked at Mum, their faces looking suitably composed and sorry as their glance confirmed that she had gone. They checked her and then left us alone.

“I feel good again now!” Josh said almost apologetically, “I knew something was going to happen.”

“And you can have a lift home too!” I smiled.

I could go home, but was slow getting my things together. I kept looking at Mammy to check that she really had gone. I tried closing her eyes and mouth but couldn’t. To let go myself and leave her empty body there was harder than I imagined, after such a long vigil. I felt light-headed and lost.

I am glad Joshua was with me to keep me down to earth and to ease me back into the other reality of day-to-day life.

I am looking forward to a long night’s sleep and a home rest for a day at least – the thought of facing funeral preparations and my business are a bit scary just yet. I thought I was well prepared for the final day, but I feel flat and numb now. I have let family know already.

Tonight I will have a glass of wine to celebrate Mum’s life and her journey home.

Week Forty-Seven

This is where she wants to be laid to rest!

I should tell Julia, Monica and Wendy that Mum is in hospital. I never thought to tell anyone apart from Debbie until now. I need to phone the hospital after the doctor has done his morning rounds too; they’ll probably move Mum to a different ward… I’m glad the shop is quiet today. It is Monday and I am waiting for the doctor to have seen Mum.

Finally the hospital phoned. It was the consultant – doing his ‘morning round’ at 3pm. He said that Mum is not responding to the antibiotics and that we need to talk. He leaves at 5pm, so I’ll close the shop now and head up there. I have just phoned Julia, who is planning to see Mum after work, so hopefully she’ll be there when I am. I feel nervous now. Please God, let me hear and speak what is true and right.

I put a 24 hour ticket on the car and headed up to where they’ve put Mum on the top floor. Julia was there waiting. I think she last saw Mum a year ago with cousin Pauline. I let the ward staff know that I wanted to see the consultant before he left. Mum had no oxygen apparatus, no saline drip and nothing going into the needle in her hand. On the white-board behind her, the scribbled message read “Nil by mouth”. She was looking fairly peaceful though. I was not looking forward to hearing what they had to say. They had certainly not kept their word and given her 48 hours on antibiotics and saline – even if they started it the moment I left on Saturday and stopped as they phoned me today, even that would be maximum of 42 hours. I suspect that in reality she hadn’t had more than 30 hours.

The consultant who had phoned came in with another consultant. When he said “hello Avril” she shot him the cheekiest smile. She never could resist a man’s voice and Julia and I laughed. The consultant knelt down on the floor between Julia and I and told us that she had not responded as they had hoped and that it was her time to go. He said that they could delay death by keeping her hooked up to tubes, but that ultimately she was not going to live without them now. He explained that the kindest course was to let her die with dignity and free of pain now that her time had come.

“But you didn’t give her time to let the antibiotics work,” I argued meekly, to which he replied that it was not going to make any difference – that her brain and body were closing down and to prolong her dying would be unkind to her.

He seemed to make sense and Julia seemed content with his prognosis and verdict. He explained that she would be put on a morphine pump which would keep her pain-free, without the need for frequent injections. He said how we needed to look after ourselves now and be assured that the ward staff would look after Mum.

Julia left and I phoned Debbie. She was due to come down in a fortnight anyway, but that was obviously going to be too late to see Mum before she dies.

I guess that without food and water you get about three days? But no guarantees. Poor Debbie could leave Orkney that evening, but still not arrive until the following night, by which time, Mammy might be gone. She has to do what she can and I have to do what I said I would do – which is to stay with Mum from now until she dies, so that she does not die alone or afraid. I phoned home to let them all know my plans. I invited the boys to consider coming to say goodbye to Nana.

I talked to Mum and began to pray for us all, settling into this new space. I spoke as much hope and encouragement as came to me, then found a Gideon Bible in the side cupboard and began reading scripture too. I am beginning to feel a strong sense of peace. I know that Mum was, and therefore is, a Christian and that her future is God’s eternal Kingdom. She is finally going home.

Simon, Josh and Conor came over on the bus and the boys looked very solemn and awkward as they said their goodbyes. Josh seemed the most upset by it all and still couldn’t bring himself to give her a kiss. They were all supportive of me staying with Nana and, as I was so upbeat about it all, they seemed reassured.

I was set for my evening vigil and I knew that Simon would look after the boys during my absence. The shop will have to wait, although I have asked Hannah to work whatever hours she can. Debbie has decided to come over on the 6am ferry and will be with us tomorrow evening, so I can now relax and enjoy my time with Mammy. The hospital staff are good about me staying.

The nurses said they haven’t been trained to use the morphine pump prescribed by the consultant, so they said they would give morphine every hour or so. It hasn’t happened like that though and I find myself calling the nurses to give her a morphine top-up every few hours. Mammy becomes very distressed and uncomfortable, writhing about the bed and moaning, until the morphine calms her again. I thought about the long list of medication that she had been taking each day in the home – Haloperidol, Levetiracetam, Lorazepam, Procyclidine, Trazodone and 2 Senna tablets every night. Three of these cause drowsiness. Mammy has had none of those drugs at least since Friday night and it is now Monday night – no wonder her body is in distress.

The chair in the room was extremely uncomfortable and there was no heating on, which wouldn’t normally bother me under a quilt, but next to the huge top-floor window, tired and half an eye on Mammy…

Mum seemed warm enough, although she didn’t have a temperature, which surprised me as the first sign of an infection is always a high temperature. Mammy’s temperature, blood pressure and everything was normal even on the day she was brought into hospital. I found myself wondering why the staff at Sunny Meadows had suspected a UTI? When had she last had anything to eat or drink? Why had they not managed to get her to drink even some water? Why did they wait so long to call the paramedics? Silly questions no doubt and academic at this point, but doubts do begin to creep in, especially in the early watch of the night, when one is tired.

I was glad to see day breaking on Tuesday – the rare event of Dawn seeing the dawn. I replenished my large mocha, guiltily ate a sandwich in front of my starving mother and looked towards the day ahead with hope and peace. I remembered the consultant’s advice to look after myself and decided that rest, exercise and food were going to have to become a part of my vigil too.

When the day-nurse came on duty, she managed to hook Mum up to the morphine pump, which was very reassuring. The nurses must have washed and changed Mum a dozen times since I have been here and I have done none of those things for myself. I went down to the hospital shop and bought myself a clean shirt and came back to wash and change. I still need a shower though.

Wendy has been to say her goodbyes and to share her memories and a few tears. Pauline came too. Mammy seems very peaceful again today. I am looking forward to Debbie arriving. Julia came again and brought a favourite Everly Brothers’ CD which she played and sang along to. Apparently she and Mum used to sing duets to The Everly Brothers when they were growing up. Julia shared many beautiful memories with Mammy and I found myself very grateful to hear of those happy times that were before my life began.

I shed some happy tears today for the life, music and dancing that Avril had once enjoyed so much. I read aloud again from the Psalms, sang, prayed and drank countless cups of mocha, but forgot to eat again.

Debbie arrived about 7pm and was with Rachel and Rachel’s new baby, Skye. This was our first meeting, but baby Skye was not allowed in the ward. Debbie and I shared a few hours together before I reluctantly left Mammy to take Rachel and Skye home to eat and sleep. I was sure that Debbie needed a good sleep as much as I did after her long trip down from Orkney, but she insisted that she hadn’t come all that way for a good night’s sleep anyhow, so I didn’t argue and gratefully crept into my own bed, after accommodating Rachel and baby, enjoying a few words with my family and making sure that my mobile phone was on charge next to my bed.

Conor greeting the new baby Skye

Debbie had promised to call me if there was any sign of Mum deteriorating.

I slept uninterrupted, but was ready to leave for the hospital as soon as the boys were off to school. I left Rachel asleep.

Debbie had found the chair so uncomfortable that she had attempted to sleep on the window-sill, but she was in good form and had enjoyed her night with Mammy. Mammy was looking peaceful and more beautiful than ever.

Debbie and I are taking it in turns; the day times we spend together at Mum’s bedside and the evenings we split – one at my house and the other at the hospital. On Wednesday I felt desperate not to endure another sleepless night, so I asked and they found me a mattress which I sank into and slept like a baby.

Mammy seems to be getting progressively better and doesn’t look like she is going anywhere. I keep playing The Everley Brothers and an early Elvis album and holding Mum’s hand.

“Don’t be afraid, Mammy!”

***

Spring seems to have arrived since I’ve been in here – I am still in boots and leather coat whilst the world and her daughter are walking down University Boulevard in summer vests and sandals.

We have been discussing the next steps, which at first felt a bit strange, with Mum still alive and possibly hearing all we are saying, but on the other hand I hope that she is approving and reassured about the arrangements that we think she would like. Debbie feels sure that Mammy wants to be cremated and we knows that she wants to be lying next to Daddy’s little plot in the kirk on Graemsay.

Later Debbie showed me a photograph of Mammy lying on the grass next to Dad’s memorial stone and we smiled. I think it will be good to have Mum’s funeral here in Nottingham, where her mum and dad’s ashes are buried and where the inscribed vase is that Mum and I had done a few years ago. Her family and friends here will be able to say their farewells and then Debbie can arrange a memorial for her Graemsay friends later in the year and Mum’s ashes can be interred next to Dad’s.

It all feels surreal, but last night I went to ask the nurse what the procedure will be when she actually dies. She seemed a bit surprised, but gave us a booklet explaining everything, saying that she had never given one out before death. We need to discuss it together though and at the rate Mum is going, Debbie will be back in Orkney before Mum finally lets go.

I also remembered suddenly that Mum and I had talked about her donating her brain to Alzheimer’s research. We never did anything more about it, so I went to ask the nurse about that too. She didn’t seem to know, but has promised to look into it. I hope it is not too late.

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-Five

A happy Mammy in her home in ‘Clett’, Graemsay, a long time ago!

Chapter 23

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.

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-Three

Another Easter time some 25 years ago…

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.

When Monica lived with Mum in Graemsay

***

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.

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.

Week Forty-One

Greetings from the home she loved the best

It came as a shock today to find a phone message from the ward manager of Gold Acre saying that Mum would be discharged tomorrow (Thursday) morning at about 10.30am. He added that he will let me know in the morning the exact time she would be arriving at Sunny Meadows.

But the funeral begins at 10.30am, so I cannot be at Sunny Meadows to greet Mum then. I feel very tearful.

I courageously phoned Gold Acre again, to question the short notice and request some lee-way, but he was adamant. The funding is now in place so they have to discharge her tomorrow. ‘She will be well looked after… go whenever you can; that will be fine’.

I want to see Mum today. Now.

As I was arriving, the ward manager was just leaving. I suspect neither of us wanted to see the other. I was not feeling very charitable towards him at that moment. He tried to be reassuring and I kept my responses brief. Had I known she would end up in a nursing home, rather than the specialist home they recommended, then I would have chosen a smaller one nearer to home. He argued that I can move her again any time I wish.

It was important for me to see her for one last time as she has been at Gold Acre. I also wanted to log some of Mum’s favourite CDs so that if they don’t make the journey to Sunny Meadows, I won’t lose them forever, as I did the ones at the St Peter’s Wing. Some things I had already brought home in anticipation of the imminent move that never happened in the Autumn. Music is the one thing that clearly links Mum with her soul and her past; it is crucial to her well-being – not just any music, but specific – Gene Vincent, Elvis Presley, Buddy Holly, Carl Perkins, Billy Fury, The Everly Brothers and others that I wouldn’t know just off the top of my head. Three of her favourite CD covers were empty today and I couldn’t locate them.

When I found Mum she was sitting up in her chair, which was encouraging, but her face looked so sour. In fact she looked as if she had had a stroke; her eyes were half closed but her left side, especially the eye and mouth, were drooping down and she had a very grey look. I tried to be chirpy, but was getting no response at all and, as she couldn’t see me, I let the tears fall.

I felt exhausted. If only I knew how to help. Suddenly she sat bolt-upright in the chair, eyes staring wide ahead.

“You made me jump!” I laughed. She laughed too, relaxed and then shuffled her bottom back into the chair a little. I was so thrilled and it just got better. She carried on sitting up and slouching back, sitting up and shuffling back… and I joked about the ‘six-pack’ she’d be getting from all the sit-ups. I was even delighted that she was hallucinating again and ‘talking’ to Tacker and Cacker about the babbies. I managed to join in the conversation as if I understood. Nearly every time she sat up I would hug her and she smiled or giggled and again she said ‘I love you.’

I can honestly say that I love you too, Mammy, and today you cheered me up so much.

The Social Worker rang Simon whilst I was out, to report that no decision has been made by the Panel as yet – indeed they have not met – so Gold Acre are clearly acting off their own bat again. Still, I’ll go to the funeral in the morning, then drive straight over to Sunny Meadows. I may even arrive before Mum.

***

Now I am hopping mad. I was getting ready for the funeral and have just answered the phone to the ward manager of Gold Acre, who told me that Mum cannot be discharged today because the funding has not been confirmed. I could feel the grit in my throat as I tried to calmly ask what had made him think that the funding was in place when he made the decision yesterday. He gave a vague answer about some emails saying that he should go ahead, and that Sunny Meadows had accepted her, therefore…

I was feeling so frustrated by them all trying to blame one another.

“You don’t need to shout!” he said.

“I’m not shouting, I am cross, but am trying to speak clearly and trying to understand why you have messed us about again.” I then repeated that I wanted to know why he thought the funding had gone ahead when the Social Worker had clearly told me that the Panel would only meet on Wednesday.

“He told you that”, he asked, “and you withheld that information from me?”

I hadn’t withheld anything from him, of course, and, boiling with frustration, I reminded him that he was the manager and the one with authority and that I had questioned the short notice yesterday.

“You should have told me about the Panel meeting,” he continued.

“I can’t believe you are turning this around now, when you have clearly messed things up.” I stuttered.

“It means you can go and find somewhere else though, since you said you don’t want her to go to Sunny Meadows; you can find her a smaller place.”

“I am going to think about this now, so I will put the phone down,” I said shaking, and we both hung up.

What a fine state to go to a funeral in.

***

I paid my respects to a few mourners after the service, then came home to see what else I could find out. I tried to phone my Social Worker and his Team Manager, but it seems that both were out in training today. So I went back to join the funeral crowd at the wake. She was a very loved and well known lady. I was glad I went.

So many people I know have died since I moved to Nottingham. Pa died in 2006 just before I came back, but since then there have been a litany of farewells and not all of them were old. Pat, Roger. Elizabeth, Clemency, Peter, Barbara, Pauline, Alf, Alec, Ted, Phil, Little John, and Rachel… I don’t want anyone else that I know to die for a while.

PART 4 Sunny Meadows Nursing Home

Chapter 22

Finally the decision to go ahead was made by Social Services. I arranged with the manager of Sunny Meadows for a date to admit Mum and they coordinated with Gold Acre. Thus Mum arrived at Sunny Meadows by taxi at 11am on Tuesday 23rd February.

A few minutes later I arrived. Mum was sitting in a chair near the door; Gold Acre staff had left and the new carers were unpacking her belongings. (It looks like her CDs didn’t come with her). I had brought her “This is your Life” book, a CD player and some more of her music.

I was disappointed to learn that the bedrooms are on the first floor, which means a wheelchair in the lift and no wandering about for Mum.

I stayed for several hours as she was clearly distressed by the journey, the change and the noisier environment. We sat in a relatively calm area, but the main entrance was busy with human traffic, phones and buzzers, a TV, another lady banging and there was Kate. I learned a lot from Kate. She thinks out loud in very clear sentences. I learned from her that Sunny Meadows is quite understaffed and that one of the cleaners now has to help out with the caring; that second sitting is best for lunch as it is in the smaller dining room and is much more civilised, and learned about the contents of her string bag attached to her ‘zimmer frame’, which she takes everywhere. She is like a sports commentator revealing each thought and observation and made it clear that she was unimpressed that they had admitted another resident into what she saw as stretched resources.

When Mum started to cry Kate shook her head saying, “That’s all we need now! No use crying in here, you’d better learn to laugh or something instead.”

I appreciated Kate and her frankness and thanked her later. She also helped as Mum kept sliding out of the wheelchair at lunch. Kate went to find help and came back with the Manageress and another lady, who helped Mum get back into her chair. A man, who was feeding his wife, told the carer in the diner that his wife needed the toilet.

The carer said, “She’ll have to wait. I’m on my own just now.”

On her own? With sixty residents. After lunch, when Mum was in the recliner, I spoke to the nurse in charge, who appreciated the ‘This is Your Life’ booklet and away I went, confused and exhausted.

***

It’s exactly ten miles each way to Sunny Meadows from home. These last two afternoon visits I found Mum sleeping in her bed. She seemed very comfortable and peaceful. I am told that she joins the other residents through the morning and lunch, then sleeps for a couple of hours and goes back down at about 4pm. They say she is very settled and that they haven’t had to give her any Lorazepam. I’ll have to come during a morning session to see if I can get Mum standing or walking.

I’m concerned about Monica at the moment. She has been suffering for some time, but has recently been told that she has diabetes and cancer. She had a scan yesterday and goes for surgery on Friday.

***

Today I went early and found Mum sitting in the quiet lounge. She was tearful, but doing her ‘sit-ups’ again. After cheering her up I took the opportunity to invite her to walk. She responded positively so on her next sit-up I took hold of her hands and asked her to come with me. To my delight she assented and ascended. She stood rather wobbly for some time whilst I hugged her properly and when she seemed steady, I asked her to come walking.

She made the right movements with her legs, but it felt like there was Velcro on the soles of her slippers, which didn’t leave the ground. I supported her back with my left arm, guided her hand with the other, whist talking lots of encouragement and a bit of brute force… But she walked. We walked the length of the big lounge and back again. She was happy to sit back down, but I felt she was aware of having done something good.

I was so happy and the staff and some of the residents were cheering her on too. It was the first time they had seen her walking since she had arrived. I really hope they find the time to take a little walk with her on a daily basis. It must help them as well if she gets a little exercise and remains mobile. It may help with the sliding out of the chair habit too. I will try to go only in the mornings so I can take her for walks myself and feel a little more useful.

Week Forty

Mammy being taken for a ride?

Chapter 21

The results of my recent enquiries are as follows. The discharge coordinator states that Mum should be having her care funded by Social Services, but they are denying receipt of the necessary information regarding the Panel’s decision. He implied some mischief, some delaying tactics and empty pots, but couldn’t give me access to anyone at the PCT or the Panel to speak to. I asked him to find out himself from the PCT if possible.

The Social Worker said he had just come out of a meeting where Avril’s case was being discussed. He complained of aggravation from the NHS due to their lack of understanding about policy and procedure and claims that the NHS have made a mess of this. Apparently there is a common procedure – every case that goes to Panel concludes with a decision that is recorded on a standard proforma. Social Services can then commission the discharge. He thinks there are doubts as to whether the Panel have even met to make a decision, because there is no written evidence of a Panel. He claims that Social Services get charged for ‘delayed discharge’ if they are responsible, but they are not responsible until they have received the Panel’s outcome report. Apparently Sunny Meadows charge over and above the standard care-home rate, so someone will have to pay the difference. This confuses me even more – if NHS recommended Sunny Meadows and that means them having to contribute further to Mum’s care, why are they making it so difficult for each department to get on with it? Social Services won’t be paying any more for Mum than if she went into the cheapest type of home, so…what is the problem? He says there is nothing I can do and he doesn’t know what else to do himself, but he anticipates a speedy resolution. I’m not sure what he’s got up his sleeve… It seems to me that both parties are pointing the finger at the other. Anyway, it’s the twelfth day of Christmas and time to take the decorations down.

***

This is now beginning to feel like a big joke. 10th February and Mum is still in Gold Acre.

Mum was back in her chair, fast asleep and I couldn’t wake her for ages. The nurse told me they had given her a half dose of Lorazepam ‘because of her shakes’. Despite the ‘Cepra’, she seems to be jerking more than ever recently.

Eventually her dinner arrived and she managed to wake enough to open her mouth and eat.

On the last couple of visits I have been disturbed to find Mum lying in her bed in the middle of the day. I know that on previous visits she had been slowly sliding down the chair until her bottom fell off and she landed on the floor. The staff apparently tried all sorts of tricks to keep her upright and said they were going to get advice from the Physio. Anyhow, Mum seemed quite happy in the bed and was very sweet tempered.

After talking to her for some time she suddenly said “I love you!” It was strangely moving and completely unexpected.

Mammy has incredibly good skin – clear, soft and completely unblemished – except for the scars from the fire. Her legs have no hairs, no scars, no veins…mine look like a London A-Z in comparison.

Today she was chuntering away in her semi-comatosed state saying “Yes I know…That’s right..” in a very conciliatory way.

She responded to my funny quips and giggled. I even thought she might get up and dance to ‘Heartbreak Hotel’. That would have been great. I haven’t seen her standing for some weeks now, which makes me sad.

***

Two weeks ago I phoned to prompt the two guys from NHS and Social Services. The man from NHS said he’d ‘been up at Continuing Care’ just that morning and that they (NHS) were accepting responsibility for not informing Social Services properly. He also said that the manager of Sunny Meadows had been off sick and therefore he hadn’t been able to speak to her. Although he said they accepted responsibility for the delay, he then said that “as an organisation (NHS? Gold Acre?) it’s been out of our hands since… well, since it began really.”

The following day Social Services called me back with good news:- The manager in charge has given permission to commission the move on the basis that the NHS had lost the original documents, but all was in order. He had also heard from Sunny Meadows, who had sent a copy of their ‘fees’, which presumably means that they still have a place to offer Mum.

Three hours later I got another call from the same guy in a very different frame of mind. Having looked at the cost of Sunny Meadows, his manager has now decided to dispute it all again and is asking, “Why does she need a ‘Behavioural Management Unit’ when she no longer has behavioural problems”? They now say they will meet her nursing needs, but not ‘fully funded’ at Sunny Meadows. Apparently Sunny Meadows charge about £600 per week for that special unit. I don’t know what they charge in the nursing unit.

What was the point of the whole assessment process then? I am content that Mum is at least settled at Gold Acre and is being reasonably well cared for – certainly better than I could do. But I also know that they cannot keep her there. I had set my heart on Sunny Meadows as a place that could meet Mum’s needs positively, but I wonder what type of home they will say she needs now? Probably the cheapest. I feel quite frustrated and disheartened by it all.

***

On Monday the Social Worker’s Service Organiser asked Sunny Meadows to reassess Mum’s needs to sort out the discrepancies. The Social Worker agrees with me that Mum has had severe behavioural needs and has the potential to present them again, especially in a new setting, with more noise and a probable change of medication. Sunny Meadows had also said that Mum would need the ‘Challenging Behaviour Unit’, rather than the general nursing unit there. So now we await Sunny Meadows’ reassessment and the verdict from Social Services.

My Social Worker said today: “You could write a book on all this!”

“I am doing!” was my reply.

Today I read that “Carers save the UK an estimated £87 billion a year through caring at home, but political parties have not set out how they will support carers in the next government.” ( The Princess Royal Trust for Carers. 11/02/10) I can’t say I am surprised, if homes charge £600 per week.

My Social Worker rang today to confirm that he had had a long chat with the manager at Sunny Meadows and that they are in agreement about something, but I’ve lost track myself. She intends to visit Mum today, report back tomorrow and then resend back to Panel.

***

17th Feb today and progress to report. I had 3 missed messages from Gold Acre and the Social Worker, both asking me to call. I phoned the ward manager at Gold Acre, who informed me that Sunny Meadows had been to reassess Mum, at the Social Worker’s request, and that she agrees that Mum no longer needs a Challenging Behaviour Unit, but that her needs could be met on their other unit – the Nursing Dementia Unit. He said that he was therefore now looking to discharge her. I said I would like to make a couple of calls before discussing this further and he curtly answered that she would be discharged by the end of the week anyway. I was reeling!

I thought it best to phone Sunny Meadows to check the facts there. The manager confirmed that, due to Mum’s deterioration, their Nursing Dementia Unit would now be sufficient to meet Mum’s needs, as she is no longer mobile nor challenging. She said she would be happy to offer her a place there. I managed to remind her that I had found the Nursing Dementia Unit to be extremely noisy. I also said that I was concerned that the reason Mum was no longer mobile was that she has been confined to her room, her chair, her bed and sedatives for so long now – in order to ‘keep her safe’ and manage her behaviour. I shared my worry that Mum would have to stay in her room at Sunny Meadows for the same reasons. I just wanted to cry at how sad it is that she’s like this now. She does not think Mum will relearn to walk, because of the loss of muscle tone and the level of her dementia now. She was very sympathetic and said that she has written in her report that I am concerned about the noise level in the bigger unit – it has 60 beds – and that I might want to consider a smaller home. However she feels confident in their ability to meet Mum’s needs and has every intention of bringing Mum out of her room into the quieter areas during the day.

I don’t feel I have an option to look for anywhere else, as Gold Acre are ready to discharge her this week. She sympathised and said that the ward manager at Gold Acre had been angry about being made to wait so long for this decision. She had told him that I needed to be consulted, but confided that she felt that he seemed to be making his own decisions regardless. She said I must make up my own mind.

I feel very angry that Mum and I are being pushed about like this. Mum is still so young; she should have been encouraged to walk about – been taken for daily walks and allowed to dance…Maybe I should have gone daily to ensure this. I am cross with myself for allowing her to have become immobile and not challenging her care plan more…for not insisting that she be given exercise…I didn’t feel I had the right to question her care though – you don’t argue with Consultants, doctors and nurses, do you?

I spoke through tears to Debbie and her questions echoed mine – Let her go there, where at least she seems to be wanted? Or speak to a solicitor and buy time? Or find somewhere else before the end of the week? She was sympathetic, but the decision and actions will remain mine.

I spoke again to the Social Worker. Yesterday he submitted Sunny Meadows’ reassessment and his own report to the Social Services Panel that commissions these moves. They are meeting on Wednesday and I will therefore hear from him on Thursday. I told him I would be at a funeral on Thursday morning and would want some notice before she was discharged so that I could be there with her. The Social Worker said he was happy with Sunny Meadows’ assessments and was reassured that it was a good safety net, because if Mum’s behaviour does change, she won’t have to go far to be cared for in the ‘Challenging Behaviour Unit’. He said that he trusts the Manager’s judgment, but there is no way of gauging how Mum will respond to the complete change of place, smells, carers and noises. And so I await the decision on Thursday morning.