Week Fifty

This is the final episode.

Taking mum’s ashes to her beautiful place of rest – to her beloved island and to Daddy’s side.

Chapter 26

My business is suffering a little at the moment, but it is to be expected – there are more important things to be doing this past month. I have been doing some old photographic repairs and enlargements for Monica. I love doing clean-ups of photographs and it is especially fascinating seeing old photos of the Haynes’ family. But for Monica, I would never have known much about the Haynes’ lot. I really wish I had written down some of Monica’s stories. But she doesn’t have long to go now. She is still putting on a brave face for visitors, but I think she is in a lot of pain and discomfort. Her legs are so swollen and heavy and she is almost confined to her bed and Morphine now. At least she is at home and has her family with her.

Today is Sunday 8^th May. I have just been to see Monica again and I know it was the last visit. She is tired and ready to go now. She told me that she loves me and said “Goodbye Dawn”. I held her, saying my goodbyes and then left the room to sob. It is so difficult to see her go too. My last link with the Haynes’ family gone. Somehow, I am finding the thought of losing Monica worse than losing my own mum.

***

Monica has gone. Friday 13^th May 2011. And she had the last laugh there too. Daddy would have stayed in bed on that day, as he was terribly superstitious about Friday 13^th (unfortunately for Mum, her birthday, being 13^th April, often fell on a Friday).

It feels very lonely – like the last of that generation is now gone and we have to step up and be the grown ups now. Monica’s funeral will be on 26^th May, at St Mary’s church in Arnold. I wonder if I shall meet some more Haynes’s then?

***

Today was a beautiful sunny day for Monica’s funeral. There were other family members, whose names I knew, but that was all. I read the Gospel at the funeral, but I couldn’t stop the tears. After the service many of us went for refreshments and a family get-together.

Debbie has booked the burial of ashes for the 19^th August on Graemsay. She is also considering being baptised, which is so exciting. I hope to persuade her to take the plunge during our Summer visit.

***

August 2011. We all went up to Orkney this time – on the train. I have now made the journey by plane, train, coach and car, over the years. The train was challenging, with many changes and timetables to keep – much more stressful than driving.

I was carrying the big, green plastic jar containing Mum’s ashes, a couple of books for Debbie, but very little else in my back-pack. The boys each had their own luggage. On one of the trains, I was chatting with a lady, telling her all about Orkney and how remote and beautiful it was… and she asked me “Where is your Mum now?” I bluntly pointed to my back-pack and said “She’s in there! We are taking her up to be buried.” The poor lady didn’t seem to know how to respond, so I laughed and apologised for being so direct, but explained that Mammy had been so poorly, was now at peace and we were fulfilling her desire to be buried next to her beloved. The lady relaxed then, but she wasn’t quite as chatty after that.

It was an arduous journey, as always, and I was very happy to arrive. Debbie now lives in a lovely house in the heart of Kirkwall.

The service is all set and the islanders on Graemsay are going to be at the Kirk, having prepared a spread for us all for afterwards.

***

Mine, Debbie’s and the Pastors’ family nearly filled the little boat to Graemsay. We dropped stuff off at the hut and continued our walk down to the Kirk. From the top of the hill, we could see the little patch dug out in preparation – the hills of Hoy creating a stunning backdrop. It felt strange to all be there together – the first time ever. The sun shone beautifully. We soaked in the serene tranquility as we waited to greet the islanders…

After the service, we went back up to the hut – I was driven there by a 12 year old. The folk on the island had many memories of Mammy, Roger and Monica to share. It was all such a fitting tribute and Mammy’s ashes are now lying next to Daddy’s, just as she wanted it to be.

Debbie’s baptism took place 2 days later – she was terrified of going into the sea and was nervous about giving her testimony, but I felt so privileged to be there. It was glorious and Debbie was so brave. She was glowing (and shivering) when she came back out of the water. Later we went out for dinner to celebrate a fantastic and momentous week.

I still have the other ashes to sort in Nottingham, a family to look after and a business to run.

Rest in Peace, Mammy.

Peace at last.

***

Finally… March 2014. It is now nearly 3 years since Mum died.

The intention was always to have the remainder of Mum’s ashes deposited up at St John’s for easy access for Nottingham folk to remember her. I don’t suppose there will be many visitors up on Graemsay. As it happens Mum and Monica both had a collection of Dad’s ashes and they had all been left with me.

Last week, the 26h February, 2014, the final service occurred. I put Mum and Dad’s remaining ashes all into a sealed box and wrapped it in hearts, then we went up to St John’s for a short service. Debbie, Rachel, Olivia, Skye, Conor and cousin Pauline were present. I did a reading from Revelations 21 (about there being no more pain or tears and all things being made new) and placed the box in the pre-dug hole and it finished with a blessing and hugs all round.

I was surprised to find myself choked with emotion when I put the box in the ground. It had all seemed like a necessary formality, but I had not felt anything until that moment. It began to rain as we departed and the most beautiful rainbow then appeared and stretched over the expanse of sky in front of us as we made our way home. It was a sign of hope and promise to me.

Five days after the burial of Mum and Dad’s ashes, it was my 49^th birthday. I realised then that Dad died 5 days before Mum’s 49^th birthday. Just another one of those coincidences that has run throughout all these deaths and anniversaries.

I miss Mum, Monica, Little John, Roger, Pa, Pat and all the other friends that I have lost in these 7 years, but I am very grateful to have been able to know and love them all.

I am especially grateful to have been able to get to know my mother and have the privilege of caring for her when she most needed it. I still struggle with doubts and questions about choices along the way, but I have to remind myself that I did do my best for her with what was available to me.

This is all we can do – to trust God and accept responsibility for the choices we make and to do our best in love.

******

I would like to give my mother the last word: –

APPENDIX 3

The article that Mum wrote in May 1996

Avril Haynes

I last saw the majority of my classmates in July 1962. I began work at Raleigh in August and 3 months later I left to have Debbie! She was born in May and in the July I married Dick – far too young and loads of problems, but absolutely no regrets. Dawn came in 1965 and completed our family.

After a house fire in 1969, we moved to Calverton, to a caravan in a lovely quiet and isolated spot – our first taste of ‘country living’. Four years later, the girls were growing and we moved to a house in Mapperley, where we spent the next 14 years. Dick was working as a motor mechanic and me running a little clothes shop called ‘Nine till Five’, on Woodborough Road. I learned a lot there and developed my knitting and designing skills.

The girls grew up and moved on and we once again thought about the ‘good life’ somewhere – an island to ourselves appealed to us! We didn’t find one, but got a close second with Graemsay, a small offshore island with 10 households – 27 people including ourselves – with a tiny Post Office and a one-roomed school which had 4 pupils at that time, but only one now. Clett is an old stone croft house with 8.5 acres stretching down to the shore. We look out to the Hoy Hills and across to Scapa Flow; the landscape changing constantly with the changing light and seasons. It’s generally mild, but quite wet and certainly windy! The summer sky doesn’t darken and the winter sky sometimes shows us the Aurora Borealis – a magnificent sight! There is no crime, no pollution, no hassle. I created gardens and sold my knitwear to local shops and Dick kept the island’s cars running.

On the 8^th April 1995 my world fell apart when Dick died very suddenly, aged 49.

Debbie whisked me off to Spain where she lives with her husband and the grand-kids – Rachel 9, James 4 and Olivia, who was born just hours after Debbie heard of her Dad’s death. Spain is quite nice, but I couldn’t live there, nor in London where Dawn is with Eddie and their son Joshua, nearly 2, and another to come in October. Dawn is a teacher there.

I am getting my life back together again now with the help of Dick’s sister Monica, who has come to live here too. We have 10 sheep, 4 goats (2 adults and 2 mischievous kids) and a cat. My job as Postmistress keeps me busy for all of 4.5 hours a week and now we are planning a caravan park!?…

Appendix 2: Where to go for help:

Things to find out about:

1. GP – for a referral to psycho-geriatric Consultant
2. Lasting Power of Attorney – someone close and trustworthy should have it! (See next section)

3. Social Worker – for a needs assessment and help coordinating all levels of support.

4. Attendance Allowance or Disability Living Allowance/Pension Credit (See next section)

5. Carers Allowance – not much, but it is for you, the carer.

6. Respite care – so that you can go away and have a break from caring, with peace of mind.

7. Day centres – where trained carers offer activities and company for your cared-for.

8. Volunteers – Alzheimer’s Society (Befrienders); Age Concern (Volunteers)

9. Trent Crossroads – ‘sitting service’: Your Social Worker can refer you for this.

10. Home help for the cared-for.

11. Carers’ groups: Social Services run these locally, according to need.

12. Local Support Groups: eg.: ‘Take-a-Break’ in Nottingham.

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 8^th 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 28^th 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 8^th 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 28^th 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.

Matthew Part 2 (of 3)

Part 2 ready too. Hope you enjoy it. Feedback very welcome. Thank you for subscribing and liking Matthew Part 1 and 1 Corinthians. (Part 3 – final chapters of Matthew – out soon.)

This is the SECOND of three parts of the gospel according to Matthew. This part contains chapters 12 through 20, visually illustrated by some great works of art, created by generations of faithful followers, to depict the glory of God and the wonder of the gospel in a variety of delightful paintings and images (some famous and some obscure). Dawn Fanshawe is reading from ‘the Truth’ New Testament (translation by Colin Urquhart). Part 1 is already available and part 3 will follow shortly, God willing!
If you like these renditions of the gospel of Matthew, check out ‘1 Corinthians’ too, which was my debut on YouTube. Please subscribe to see what else I might produce and to watch Matthew part 3, when it is available. Thank you for watching. Comments also welcome.

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.

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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.

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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.