A long goodbye

 

 

A few days before my mother died, the hospice team (pressured by the psychiatrist) came in and finally got the meds right. They started giving the drugs through a pump, and the day this started, my mother stopped howling and went to sleep.

Between my last post on Mother's Day and the three days before Mum died, all sorts of things happened. Dad had a heart attack, and suddenly my days had to be divided between Aroha with Mum and Coronary Care with Dad. I was let down and deeply hurt in this time of crisis by a family member I loved and had totally trusted. But for now, I just want to focus on recording the last days of Mum’s life. I took notes on my phone as I sat beside her for the last three nights, so I am transcribing them here, lightly edited.

May 28/29^th

I recently watched a video on Instagram about noticing how the universe (I would say God) is supporting you. So I’m sitting beside my mother’s bed as she is dying and paying attention to this. Yesterday I was sick all day with a kidney infection and I got really upset and overwhelmed. I felt that I couldn’t do any more, and I felt that all the sacrifices I’ve made for my parents over the last five years and In particularly the last seven weeks since Mum had a fall had been undermined by someone I trusted. I had a complete meltdown - thank God for Bruce! - and went to bed feeling shattered.

Then as I was about to switch off the light and go to sleep, I got a phone call from Aroha – Mum’s breathing had changed. Come now. It felt impossible. I was so befuddled I couldn’t think through what I needed to do: should I get dressed? Go in my pjs and dressing gown?? In the end I got out of bed and got dressed, packed music I needed for mum, my medications, a book, a phone charger, my hot water bottle, and headed over here. Here’s how “the universe” showed up for me:

·        I felt a great calm as I was ushered into the facility while everyone was sleeping.

·        I rang our lovely young priest, and he came right away (who knew there was a hot line for priests in case of emergency??). Together we said the prayers for the dying. He absolved her of her sins and anointed her, and gave me communion, telling me to break off a tiny crumb and give it to her. It was absolutely beautiful to be doing this with everyone else asleep and peaceful. And once this was done, I felt I could really relax. We had done the main thing my mother would have wanted. She was going out of this world unburdened. My young priest sat next to Mum's bed. "Tell me about her," he said gently. And for half an hour I told him about her, funny stories, her impossible expectations, how much she loved me. We were a little pool of light in the darkness. 

·        Mum is, after weeks of howling and screaming, completely calm and comfortable. She stops breathing for about 10 seconds at a time, but this does not seem to be causing her any distress.

·        This long peaceful night has been a wonderful restorative for me. It has alleviated all my stress and hurt. It has been my privilege to choose to support my parents. And I have had this precious night with my mother, I’ve chosen to be with her, and I feel full of love and gratitude.

·        I read the Dean’s Watch in the last few days – first time for years – which is all about love and death, and it reminded me of a completely different set of values, a different story about what matters.

·        The sunrise was beautiful this morning

·        The nurse kept me supplied with tea and hot water for my hot water bottle. The kitchen staff this morning made me a sandwich. Everyone has been so kind. I feel protected by everyone’s kindness.

 

May 29/30

How God showed up for me today:

·        Ed and Anne-Marie arrived today and took on the evening shift so I could get a few hours sleep.  Ed’s timing is a real gift of God – he’s actually here to see his dad who is unwell again, but it is just such a relief that he is here.

·        Dad came out of hospital and my brother brought him here to see mum. Both of them seemed at a loss to know what to do but at least they came.

·        Bruce cooked a huge vat of chicken chowmein and it was exactly what I needed (we discovered that Goerge loves to eat raw carrots – Bruce in despair that his taste for fruit and vegetables means he will never catch a rabbit!).

·        My kidney/bladder infection is finally responding to antibiotics – the uncomfortable sensation is abating.

·        I followed my instinct this morning and rang Lizzy to let her know Grandma is dying. We cried together but it was definitely the right thing to do.

·        I had a long conversation with Jill (Mum’s youngest sister, in England), and she told me stories about their childhood, her memories about mum as a young woman.

·        So many texts and promises of prayer from friends – I feel quite surrounded by prayer as I sit here.

·        An imperfectly formed thought: I was thinking about the Dean’s Watch and how everyone keeps on putting up boundaries to love which the Dean has to smash through. And it seems as if it’s a clash of two stories about the world: one about boundaries and self-protection and control, and the other about a love that flows everywhere. It helps me to understand why I felt so undermined by this family member: I felt they were diminishing my story or love and generosity, but really it was just two different stories colliding.

·        A beautiful poem arrived in my inbox today called Return. It is a poem about dying. I read it through tears to mum. It ends “the whole universe willowing in delight that you have finally come home.”. I can’t type this without crying. I wrote to the author and she wrote straight back: “I am holding you both right here with me as I sit here reading poetry in the sunlight of mid morning. You are so loved, she is so loved, your love is immersive, sacred, eternal. I am so honored to be part of this movement with you." There was something so miraculous to think about a stranger on the other side of the world accompanying me on this journey. 

·        Another line from the Dean’s Watch- a quote from a psalm? “ Bless us, oh Lord, at our last awakening, into the the house and gate of heaven “.

And this: “ Love. The only indestructible thing. The only wealth and the only reality. The only survival. At the end of it all there was nothing else”.
 

And somehow, only by the grace of God, I’ve been given the strength to stay by my mother’s side for two days with very little sleep. I fell asleep for about an hour: when I went to sleep, I was listening to Mozart’s requiem and when I woke we were almost at the height of Barbar’s Adagio for strings, so I was immediately at full attention!
 

As I write this last note of the night, it is 7:50am. We have been listening to the Messiah, and the Alleluia Chorus has just finished. I felt full of joy, so full of the presence of God. And I felt a little push: Write this down for a time of grief when God will feel a long way off. Remember his presence with you, here, now. I’m not sure if this is natural caution - I was thinking earlier that I have already mourned the absence of my mother as dementia has robbed her of so much - but I am writing it down just in case it is a God-nudge.

Sunday 2:50am

My mother died at 2 o’clock this morning. I hadn't been able to sleep yesterday during the day, so I was very tired. I arrived at Aroha at about 11pm. Anne-Marie and Edward were sitting by Mum's bedside chatting. They had switched off the lights in the room, which made it feel peaceful. After they'd gone, I kissed Mum's forehead and said softly "I'm not sure if I can do this for another night, Mum. I'm so tired. But I'm here now". Her breathing was long and deep. I went to the kitchenette, made a cup of tea and heated water for my hot water bottle. Through the open door, there was a beautiful scent of winter  jasmine. I picked a sprig and put it next to her bed. I fell asleep in the chair beside her, breathing in unison with her long slow breaths. 

 I woke up with a start. The room was completely silent. I jumped up and leaned over her. Silence. I thought this is one of the long gaps in her breathing and waited. Nothing. Her face had completely changed. She didn’t look like her at all. I ran for the nurse and couldn’t find her. So I came back and waited until I heard her in the hallway. She came and checked the body and advised that we had to wait for 10 minutes. I sat beside mum and prayed the prayers for the dead. Then the nurse came back and confirmed the time of death. She reassured me ( I was a mess): you were with her right to the end, that’s what matters. She asked about arrangements and asked what I’d like to be dressed in. I couldn’t think - can you give me half an hour, I asked. So I have been sitting here trying to face the new reality.

It seems absurd to say I wasn’t prepared. I wanted her to die, for the end of her suffering. But it feels so…final. It seems so stupid to write that. But I won’t see her again until it’s my time to go.

One of her favourite lines from the Bible “now we see through a glass darkly but then…tada!!!!!… face to face!” She's there now. Seeing him face to face. 

I can’t write any more. I can barely see my screen.

 3:45am the nurses are dressing her, changing the sheets. I picked out her clothes- everything looked shabby but I found the jeans and a blue top I bought her recently and a deep plum jacket. Now I’m back in her room. They have somehow freshened and tidied the room, and Mum’s body is tucked under the yellow sheet with Teddy beside her. She looks peaceful. But she not my mother anymore. She doesn’t even look like herself. I can feel it so clearly: she is not here. As I sat in the corridor while the nurses worked, I thought through her obituary. First draft:

Jean Mary Emerson 19 November 1936 - 31 May 2026. Jean was a teacher and first communion teacher in Napier, influencing the lives and faith of hundreds of children. She was wife to Ellis for nearly 70 years, mother to Lisa, Michael, and Anne-Marie, grandmother to Edward, Rose, Lily, Kate, Emily and Lizzy, super-gran to Sol, Xavier, Grace, and Ren, best friend of Margaret, sister of Liz, Eileen, Chris and Jill. She was loved by us all.

 I texted Jill - the only family member who would be awake at that time, went home and fell asleep for a couple of hours. Then I rang my brother so he could tell Dad. Ed came with me, at 7am, to meet the undertaker. After Mum had been taken away, he asked if he could bless the room. A group of carers joined us. And my son said a blessing for his grandmother, for the carers, for everyone to come who would spend time in this room, and for the dying. My mother is home at last. 

Mother's Day

 

 My mother died, peacefully, in the early morning, 31 May. I will write more of this in another post. But the weeks prior to this were very difficult. She had had a fall - pushed by another resident - and ended up in hospital. 24 hours in the hospital, most of which we spent in Accident and Emergency, was very traumatic for Mum and she never recovered. She never walked again. We never had another conversation. When she got back from Aroha she began howling and screaming. This continued for over six weeks, all day and most of the night. The most terrible animal sound. The medical team at Aroha were beside themselves as she disturbed all the other residents. The doctors and psychiatrist couldn't decide if this was pain or anxiety. No medication seemed to help. I was at the rest home every day, trying to feed her, trying to distract her and give the staff and other residents a break. On Mother's Day, I wrote this.

xxx 

Today is Mother’s Day. The day began with a text from Em (and later a post on Instagram), then a video call with Lizzy late morning. Rose and the Takaka crew sent a video, and Ed rang this evening. This Mother’s Day precisely how I want it: no big fuss, no presents, but everyone touching base gently, comfortably in some way or another. “Quite different to the pressures I felt about Mother’s Day!” I said to Ed when he rang and asked about my day. “Is that why you don’t want a big fuss on Mother’s Day?” he asked. And I realised yes, that’s exactly why – I don’t want my children to feel that anxiety, to feel like they can never please.

The thing about my mother and Mother’s Day was that she was highly competitive about presents. In particular, she was competitive with her best friend, Margaret, who didn’t have a competitive bone in her body. Whatever I bought her, Margaret’s children did better, as far as my mother was concerned. I particularly remember the year I bought her some nice hand cream and shower gel from the Body Shop, which was her favourite shop. I was sure I had nailed it this time. My mother looked disgusted. “Margaret was on the phone bragging about her children making her hanging baskets for Mother’s Day!” she spat out.  And that was the other thing about Mum. If my children forgot Mother’s Day, I wouldn’t let them know I was hurt. I’d take a deep breath and swallow it, perhaps have a private moment. I might say something gently a few weeks later when the sting has gone out of it and I could say something lightly, with humour. But my mother always let me know that she was disappointed, that she was angry, that whatever I’d done wasn’t good enough. I’ve thought a lot recently about how anger was her default setting. I sometimes wonder whether all this screaming and howling is just the rage that was always just below (or often above) the surface. 

 One year I got it right. It is still one of my happiest memories. Ed and Rose must have been about 7 and 9. We set out early – I remember driving through the gorge in the fog – and we got to Napier in time for the start of Mass at St Thomas More church. This had been my plan. We slipped in the back and Mum didn’t see us until we went up for communion. “Happy Mother’s Day!” I whispered as we walked back down the aisle. By the end of Mass, somehow every person in the church knew Jean’s Mother’s Day present had miraculously walked up to communion. Everyone made a great fuss, and Mum was very very happy. But I have occasionally wondered whether what made it so special for her was that everyone had seen.

Incidentally, my mother’s competitiveness with her best friend and my inadequacy wasn’t confined to Mother’s Day. A few years ago, she was complaining that Margaret was “bragging” about her daughter Anna taking up painting and how she had one of her paintings hanging up in her lounge. (Knowing Margaret as I do, I know there is no way Margaret was bragging – she was just – or so she thought – sharing happy news with her best friend). “Why can’t you be a painter like Anna??” said my mother, furiously. She really meant it. She was, really, furious. “Because, Mum,” I said, “I’m a professor!”. 

 

I didn’t go to see her today. Michael is here for his 20-hour visit, so I’ve stayed away. It has been a relief to not go to Aroha today. Not to have to sit beside her while she stares at me and howls and shrieks. The doctor has kept upping the medication, but still she howls and writhes. She’s better during the day, apparently, but by the time I arrive about 4:30pm she’s back to this. Things have changed though. Where in the past I have been able to reach her with a song or a poem, now she just carries on howling. A couple of days ago I had this bright idea that perhaps she was unhappy in the noisy room – after all, she was an introvert. She always liked silence. It made her mad when Dad had the TV on in the evenings – and at Aroha the television (and sometimes the radio as well) is always on. There are people shouting, carers moving about, noise from the kitchen, trays being wheeled around. I have sometimes thought that constant noise would drive me crazy if I had to live in it.

So, I linked one of Lizzy’s portable speakers to my iphone and found some scented hand cream, and put my knitting in my bag. I thought we’d find a nice quiet space – perhaps her room or the smaller lounge area – and I’d put on the Messiah, just quietly, and massage her hands and then just sit quietly with her and knit. It made no difference at all. In the quiet confined space of her room, the howling seemed unendurable.  Rose had suggested that perhaps Mum’s howling was just her letting out all the feelings she had about her life, and perhaps my job was simply to sit with her and let her express all those feelings – as she sometimes does with Xavier, when he’s upset about something. She said she sees her job, in those circumstances, as being to be the bigger person, the adult, who isn’t trying to take away the feelings but to make him feel safe with them. I thought that was a helpful idea, so I tried. 

 But – I don’t know. Children don’t behave like this: the bulging, staring eyes, the constant animal-like howl, the writhing, clawing body. It seems strange to read what I wrote only 4 days ago, about wanting to be a loving presence. Now I find myself fighting back anger and horror and feelings of complete hopelessness. Just leaving the house, driving there, parking the car, and walking through the doors, putting on a smile, greeting the other residents and carers, pulling up a chair – each of these things in themselves are hard, require an act of will. And then to sit, to try to be loving and reassuring, when none of it makes any difference at all….

And then I feel ashamed of how I feel. Has all my effort actually been about myself, about feeling I could reach her, love her, make a difference to her? Several things have played in my head as I’ve tried to process this. One is the imaginary Joy in my head saying “this is your mother’s journey, Lisa, you can’t make it for her. You can’t take away her fear and anger”. And the other thing came to me on Friday morning, when I sat in church for Adoration and looked at the monstrance, and it came to me that I should lay all of this down at His feet. That I was at the foot of the cross. And the words in my head said, “Remain in me”. I feel like I’ve reached my limit. Perhaps my job now is to trust her to God. To recognize I can do no more – that He has this in hand. And he will carry her along this journey, He will be her companion now. And of course I must continue to work with the doctor and carers, advocate for her with the medical team, visit her. But with no expectations that I’m doing any of the important work on this part of the journey. 

 While all this has been going on over the last month, Bruce and I have also been in the middle of processing the harvest. I have bottled 85 litres of tomato passata, and various amounts of apples, pears, made jam from black currants and haskap berries and damsons, and jelly from apples and grapes. This weekend we were working on the honey harvest. As we were spinning the honey frames, I was absorbed in thoughts about my mother. I thought about how difficult it is to extract the honey, how the honeycomb must be systematically broken, and then the frames spun at speed, and the mass of honey and honeycomb sieved through multiple grades of sieves until the honey comes out, golden, fragrant, glistening. I thought perhaps this is what death is like, the hard shell being broken, and spun and sieved through finer and finer mesh, until the beautiful soul can be released. I don’t know. Perhaps this is altogether too fanciful a metaphor. I’m struggling to find anything positive to say here.

My mother has said only one sentence to me in the last four days: “I don’t know how to die”. I felt as if my heart was breaking.  I said softly, “I know, Mum. But your body does know how to die. You just have to let go. Perhaps you need to stop fighting. And Jesus is with you – he will show you the way. He will.” There was a moment of quiet. And then the dreadful howl began again. This is my mother. Raging and raging against the dying of the light.