June 2007
I felt the need to talk to someone unconnected, someone floating out there in the universe. I feel like I am the only one who has a mother who is battling against death. I look back over my diaries and read what I wrote this day last year and it feels like we have moved backwards not forwards:
She tries to hide the pain but we can see by the position she sits that the tumor weighs heavy. It is affecting her bowel although she won't talk about that, she has visited the bathroom four times since my arrival. The drive yesterday by her own admission took her out of her comfort zone and I feel emotionally took her back way. For the first time last night she admitted that this is not a 'life' she is currently leading but an existence. This tumor is tenacious it has, she says, reduced but the way she holds it and moves with it in charge of positional mobility I wonder for the first time tonight how much she is hiding from me and dad.
She is losing courage although again she will not admit to anyone. Unguarded moments she talks about how fed up she is, how terrified, how she wants her old life and friends back and then she realises what she is saying and the infuriatingly false tone resumes : oh its fine, the chemo is not that bad and if this doesn't work we have loads of options to come.
A storm is rumbling around outside as I write. It feels like percussion to the uneasy feelings I have had all day of life being short - one can get stuck in a habit that should be broken and without realising it years can very quickly be spent in a state of melancholy which is unnecessary.
The rain has started now, a consistent hiss as the gutters fill and drip into the yard below. it would be too easy to drift into black thoughts and to see the storm as some potent of doom, and yet it is not easy to raise our spirits, to feel a meaning of life it feels as if we are all on a persistent and cynical incline on which we have an obligation to press on without grumbling, creating tension or changing direction.’
And so here I am a year later, I spent last Sunday shaving the last of my mothers hair off after the latest dose of chemo whilst my father did some ‘gardening’ to get himself away from the awfulness of the curls of soft hair lying on the kitchen floor.
She has spent the week in hospital in isolation, we were not allowed to bring flowers or chocolates to cheer her up as they pose a risk of infection. We cannot hug her or kiss her we have to wear plastic gloves and aprons. I visit every day, My sister Caz comes, once more with family in tow and leaves my niece who is twelve behind to stay. The house is suddenly full of people my husband's niece is staying from Australia, she is 23 not working and is just around the house all day. Yesterday I felt so low I began to wonder how I am to move forward. I walked downstairs to hear my husband and his niece whispering, it is so obvious that I am the topic of conversation. He is trying to protect me to tell her that I feel fragile but it makes me feel excluded and lonely and uncomfortable in my own house. It is difficult to know where to begin with how I feel - probably because I don't know. Mum's cancer has not only encompassed her fully but it has spread it malignant wings to infold me as well. I feel an enormous craving for space...to run away but I only get as far as a bottle of wine and then feel guilty for drinking. Do I have a drink problem or am I drowning my senses? I feel the last two years have been an ongoing barrage of trials and a constant uphill struggle to do anything that I would like to do or achieve in the world.
I am 43 and feel my life is stagnent and out of control, I am no longer in charge. I find myself in a dark space and I see no escape. At home we seem to have a procession of guests who fill the house - I can no longer potter about without encountering someone I have to look after or I feel obliged to be cheerful infront of. I can no longer lie in the bath for a while reading my beloved books, my escape. I find myself listening to hear who is where in the house. Even lying in the garden I find myself with one eye and ear to the gate or the door incase someone appears and I am obliged to perform. The little things have become huge I live in a state of panic now for what will happen next. I feel I can no longer leave my room straight from bed to make tea in my own kitchen without feeling nervous.
Every time the phone goes my heart leaps....who wants me? Every time the doorbell goes my heart leaps, it is as if every interaction I have involves a performance a mask to my true feelings, the true me. I feel trapped and tearful today and yet I have no safe place to cry, in moment I must leave to pick mum up from hospital after another round of chemo and antibodies, I must stop at the supermarket to pick up food and work out a dinner for tonight. I must remember to check on my husband who is feeling unwell today and I must remember to tell the chemo unit that mum's CAT scan has been booked for the 7th August as it clashes with her next Chemo.
Today is our wedding anniversary, it is strange to think that this time four years ago we were all happy and leading our own lives, that my mum was strong and happy. That said I feel more optimistic and stronger today than I have in the last two weeks. I have spent the last two nights staying with Mum and Dad, Mum is very weak and still surviving on morphine. It is difficult to look at your mum without hair she looks so fragile and incredibly old like some wizened buddist monk. I forget over night that she is changed physically so much and it is still a shock when I go in to see her in the morning.
Her and Dad have had a tough time this last week....no probably this goes on all the time but I have noticed. She has been nagging away at Dad over household things and is beginning to resemble an old duchess sitting propped up by cushions ordering her serfs around. Dad is as usual stoic, he understands her better than anyone and he assures me it is partly because he forgets to do things that she appears to the outside world to be consistently on his case about things. I know he has had her in tears over the last few months when he could take no more and flipped.
This illness is self absorbing it has in effect recreated my mother. Her whole circle of existence is the never ending bottles of pills, bottles and painkillers. Her arms bruised and punctured by drips and transfusions. Her hair tufty and sparse from the chemo. her body skeletal and her skin loose, she talks endlessly about the hospital, her nurses and consultants as if they are an extended family. We hear about the nurse’s children and husbands. She is now unable to talk about anything apart from herself, each conversation is rotated, sometimes in a brutish way, back to her. My father can no longer have a backache without hers being worse, I can no longer have a poor night's sleep without her 'always having that problem'. It is difficult and I feel guilty for the mixed emotions that I feel
But there are probably loads of other daughters out there who feel the same caring for a loved parent. There is no escape...you cannot walk away without breaking ties completely you are tied umbically and you have to standby and watch the gradual decay of someone who has till this illness been the strongest most central part of your life.
The tears are stored somewhere deep within and it is random events that trigger their release. I seem unable at present to cry although I feel a deep desperate need too. It is as if when that almighty river of tears is released that it will never stop. I feel alone and again it feels like the world is crying for me as this incessant rain pours down leaving huge pools of tears everywhere.
Stronger Chemo, more antibodies we feel as if we are on some kind of bizarre treadmill, real life pales into the background no time to call my own, my mind is certainly not my own filled endlessly with thoughts of her. Her immune system goes into melt down as soon as this new pernicious chemo is dripped into her body. Within a week regardless of the invasive stomach injections to try and boost its flagging army of white cells her temperature rises and she is neutropenic and we hit the familiar road back to the hospital and she is on isolation. Fear rattles at the windows as we are told the list of items she is not allowed. Even her own body could harbour the germs that could turn at any time and cause an infection that would take her from us. I search for gifts to lift her morale but the permissible list is becoming so short now that it is almost impossible to find anything at all. No Flowers, No Drinks, No Bottled Water, No Biscuits or sweets (unless individually wrapped) Paper and magazines should be wiped with antibacterial wipes to be safe and we too are wrapped, bundled into plastic gowns and a sign appears on her door. ‘Restricted Area please wash your hands and gown up before entering’ It is beginning to feel as if we are in some third rate horror movie the only difference is that I can’t rise from my seat and leave the darkness of the theatre and walk out into the sunshine. This cycle of chemo and hospital is to become as regular as clockwork through the summer. We almost become complacent with it. The doctors take cultures and swabs, they test her blood and yet they can find no infection present. She is permanently attached to a bag of antibiotics and like a photograph fading over time we lose a little piece of her with each day that passes.
The summer comes and goes and the shadows lengthen and we know again that the cancer is still with us and now we have come to a point in treatment that we all wanted never to arrive at. Radiotherapy, the last resort, the treatment everyone wanted to avoid. Is she strong enough to cope, I have quiet thoughts on this but my father remains stoically optomistic and this seems to be infectious as mum tells me how this is going to be the treatment that will sort her out. I smile and wince inwardly, why leave it till now I want to shout, if this is going to create a bloody miracle why wait three years? Nothing stops the course of treatment, Meetings are arranged in Exeter the nearest unit and our diarys for September are filled with dates and drivers are volunteering to do the runs with us as she has to go the 50 odd miles for a 2-3 minute treatment every day. I book a holiday for the end of treatment, a week in Greece to try and escape the endlessness of everything.
The tumors are pressing against her sciatic nerve and we are in a wheelchair now although she can manage the stairs with the help of two sticks. The mad procession begins as good friends and curious acquaintances ferry mum up and down for treatment. Just before we leave for Greece she walks out of her session to the cheers of her nursing staff. I hold my breath as Ian and I board the plane, could this really be working? Four days later I get a text from Dad, Mum has had a relapse, so bad that she is unable to complete her course. I sit on the endless sand the sun beating down on my head and feel the heat in my tears as they slide down my cheeks as I watch the tip of Ian’s snorkel far out bobbing in the blue as he escapes to another world and the waves wash relentlessly onto the beach.
It is hard for me to picture my mum as she was, it is as if time and her cancer have recreated her into someone quite different to the happy, singing mum I remember. No more dancing around the kitchen, no more dipping our sticky fingers into cake mixture, no more girlie lunches or shopping trips. No one to admire my latest purchase no one to approve or disapprove, Noone to tell the minute trivial detail of my life too.
I wonder sometimes as I watch her sleep how it must feel to be a mother and yet be unable to mother? To sit quietly and watch a child suffer illness and be unable to scoop up their troubles, to waft in and cook meals, buy flowers, clean the house and touch the fevered brow without the fear that comes with a fading and failing body. A blood count so low that germs lurk malignantly on every surface waiting to burrow deep within her, to add to the heavy burden of tumor she already carries.
Without a life of her own my mother has become fully reliant on that of my own and my sisters. She seems to absorb us sucking our lives into her own to feast on each gobbit of information whilst we pull and strain against her maternal leash battling with our guilt and our need for independence which shifts and moves endlessly within us.
The fatigue seems all encompassing folding her in its arms her body heavy in its embrace, she is unaware of us all around. It is so easy to lie down to close her eyes and sleep deeply through the daylight hours. She awakes sweat drenched and palpitous unaware of how long she has slept or what time of day it is. I look at her unfocused eyes and wonder what is whirring through her mind. I sometimes catch surprise as she realises she has slept for a whole day almost without waking or that she has been up four or five times during the night awaking Dad and I and creating a morphine induced turmoil of the small hours.
And so the end beckons........
October 2007
I am staying at Stowford. Mum is a shadow of herself and we now only get glimpses of the woman we love. We can no longer get her to the bathroom she has a commode by the bed which is hidden away if visitors should call while we all spend an hour or so pretending things are not as dire as they surely are. Dad is doing a lot of physical lifting particularly at night and early mornings when it as if she leaves her body and go elsewhere her eyes glazed, her body limp she talks in riddles and smiles enigmatically at us as we try to help her. I try to tell myself we are lucky she is not in too much pain, that the morphine is working as she laughs through this nightmare we are all living.
I massage her feet at night as she tells me about ‘him’...can I see him she asks as she stare glassily of to one side of me, I feel goosebumps rising on my arms, who I question her but she is seeing things we cannot see, morphine induced images or those she has lost in the past. Maybe an Angel floating down to help her on her way. She tells me a story about her great grandmother, an impossible tale, then constantly asks me if I am alright. I can take no more I gently wrap her feet in a towel and slip guiltily away to fetch dad.
Today we are due to go the North Devon Hospital to see her hematologist. She is very weak, unable to walk unaided, her hands shake and she does not seem to wake up at all. Dad and I whisper downstairs and decide that since she is unable to make the short distance to the bathroom she will never, even with our help be able to make the stairs. Dad calls and cancels the appointment and then calls her GP as we are still concerned about this cough that racks her body and her breathing seems to be getting more and more erratic. She is also due for a flu injection which seems bizarre but we are assured she should have one as should Dad.
The doctor arrives with a flu injection and reassures Mum that all is well and there is nothing for her to worry about that she is just exhausted from all the treatment she has received over the last few months. We watch and wait.
There is still no improvement, she is very weak after a couple of truly terrible nights. One evening we were up at 1.30, 3.00, 4.15, 5.00 and then again at 7.00am. Mums seems unaware in these twilight hours of who or where she is, she cannot remember if she has already called us up and keeps asking us for reassurance that all is well and that she is not being a nuisance. Never once the whole time through her illness did I ever hear her complain in the true sense, the odd mumble about an aching limb or that the tumor was pressing, mostly it was just acute frustration as she slowly lost control of her body. As the weeks progress we are unable to lift her she is still fighting but physically she is exhausted.
1st November 2007
Still no improvement. My sister calls from up country to insist we employ a nurse to deal with this night calling, insisting that it is to much for me and dad. Maybe it is but we can’t hand over the reigns after all this time to a stranger particularly when she is at her most vulnerable at night.
After much deliberation and assurances that dignity was still in tack We managed to persuade her that her pads were not enough at night and she should be wearing incontinence pants. What a chat we had in the bright slants of sunshine slicing through the windows, chasing away the night chaos, dust motes buzzing cheerfully in their wake.
She is ok, she insists, it is not necessary, she is managing fine, isn’t she? I look into her eyes and see the fear, the questioning pleading look, it is as if I am looking back into my own younger eyes not understanding that a problem is real, that it needs to be solved. Eventually she gives in with a sigh and a slump of her body. I have to be brutal, cruel to explain that her bladder is so weak now that we very often can’t get her to the commode in time. That her body and mind are so weak that she can’t help us at all and we are having to change more and more sheets at night that she has no memory of and exhausts both Dad and I. The fight has gone as she accepts the inevitable we now very often don’t have to lift her just change her like a small baby. She is still fighting and telling us that before long this situation will be reversed but she is so very very weak and we watch as with each move she is unable to make, the lights dim gently in her eyes. She is still insistant that she tries to be less dependant physically. Emotionally and spiritually she seems very strong just unable to communicate it a lot of the time.
Wednesday and we are due a vist from the Hospice padre. A tall gentle quietly spoken man who takes a short communion service in Mum and Dad’s bedroom my first for 25 years or so. Mum watches dad and I closely from the bed as I feel tears prick behind my eyes and my throat close and I am unable to speak as the prayers and words transport me back to a childhood. Tears pour down my cheeks as Mum just watchs us and prays. I think her eyesight is poorer than we know, she doesn’t mention my tears after the service. Dad and I make a pot of tea and plate up small slices of fruit cake downstairs leaving her some spiritual space upstairs with Ben. Dad had found our little service immensely moving and extremely difficult I think we both know that the end is now hovering around a corner waiting quietly to change our lives forever.
Thursday and Trevor mum’s hospice nurse came out to see her again and although as professional as ever. He is disappointed that there is or seems to be no improvement he is diplomatic but I can feel something large and heavy moving gently in my stomach. He is to liaise with her consultants and will be back after the weekend. It could be a number of things that have caused this relapse but the black dog is always lurking and even after all this radiation it could be that the cancer has taken hold once more.
Dad and I clutch our seats in this awful rollercoster ride we are on. Dad is determined to let mum be at home, to feel loved and in the bosom of her family and I will do all I physically can to help in achieve this wish. I think we both know at this point that there is no treatment they can give her at hospital that will save her now. Caz and the family arrive tonight, I can’t bear it for her it will be an immense shock for her this awful decline of the last few weeks.
Night time comes around again and we change sheets the size of a Cuttysark sail in their kingsize bed with our floppy, giggling captain wrapped in the middle of it as we can’t get her up or leave her safely seated anywhere without her falling over.
Caz has bought liquid paracetamol now as Dad is unable to get mum to take her pill at night. Still she sweats and sweats. We buy her a special pillow to try and absorb the heat and still she sweats and sweats.
Time marches on 2 November, Mum is weak, so weak she is unable to hold a cup of tea but she struggles and manages with dads ever patient help take her huge supply of drugs. She manages some Complan and a slice of toast and marmlade one of the last meals she is to eat at home .
I prepare a basin of warm water and scent it with Frankincense and Lavender essential oil and she slowly washes her head and face. I then gently wash her arms and hands and we manage to clean her teeth and gargle. I feel so guilty that we have forgotten to help her clean her teeth for a couple of days and this guilt proves to have staying power as I still wake fretting about it days after her death. I spend some time massaging her feet and she falls asleep. I leave her sleeping, propped up mouth open breath labored for an hour or so.
We are worried about the commode and the lack of mobility and how ill equipped we have become to deal with the person she becomes at night so following a discussion with dad I call the district nurse and ask for help and they book an appointment for one a clock. They are also due to take blood to try again to get to the bottom of what is going on.
12pm and Dad and I creep up to see how she is and find her in distress, the bed is soaked her ‘pants’ have not done the job. She is so weak and feeble and very unhappy. We lay a padded mat under her and and I call the district nurse in tears to say we need help urgently and I am promised they will arrive within the hour.
1pm they arrive and insert a catheter, with their help we change the sheets and mums nightie and as we are struggling with this process her Hospice Nurse arrives. He takes one look at mum and decides the time has come to admit her to the hospice and he organises an ambulance to come and pick her up.
We whisper downstairs and he confirms our worst fears. This is indeed the end and it is only now a matter of time…..I find myself unable to take this information on board. All these months and years I have fantasied her death, testing my emotions and now the time is near I am amazed to feel nothing at all.
I had called Caz, my sister at 12pm and for about the fifth time in so many weeks I told her to get down here as soon as possible as the end is here. She grabs the kids from school and runs.
Ian, my husband, drops everything and comes out to West Stowford, Mum and Dads house, and takes the dogs, who have been sadly neglected the past few weeks, down to the field for a run as none of us know what the next few hours and indeed days may hold. As he and the dogs return the ambulance arrives and a grisly hour unfolds.
Mum and Dad’s house is old and the staircase awkward and narrow so a stretcher can not be used. The girls with the ambulance are young and slight. Lammy and Dad have to help them lift mum onto the chair. The district nurses have left no strap for her catheter so further indignity insues as we have to sellotape it to her leg. Then the terrible decent down the stairs, I try and tell myself that mum by this time is past knowing what is happening to her. She has lost all feeling to her feet and they keep slipping precariously of the foot plate and are in danger of being bent back and squashed.
Eventual the descent is complete and the girls give mum another shot of morphine as she moans in pain. We persuade Dad to go in the ambulance not to follow in his car as he wants and I feel a sinking inevitability spread through my limbs as the ambulance draws away and out of the drive.
Ian and I tidy the house, moving the commode out of the bedroom to join the wheelchair in the spare room along with the packets of Tena pads, pants and sheets. I remake the bed carefully and place mum’s book beside the bed, her bookmark still in the same place it has been for the last two months or so as her eyesight has become so bad she cannot focus on the words....but she keeps up the pretense for our benefit.
I pack her red bag, a couple of pairs of pants, a nightie, her beloved Cushtie pillows that help her stay comfortable in bed, her childs toothbrush (her own now too harsh as any cut could start an infection), her sponge, towel, dressing gown and flannel. I slip in our aromatherapy oil thinking that she would probable not need or use any of these items and aware that I am going through the motions more for myself than for her. As we leave her GP calls to say that the results of her blood test are back, the cancer has returned and she is in urgent need of a blood transfusion and she will be sending an ambulance to take her to the Hospital. I feel a huge sense of relief as I tell her she is already on her way to the Hospice and that we as a family feel that the treatment days are now over.
We arrive at the hospice to find her very weak and sleepy. We gather together to wait for the inevitable closing of the lights of her life. Saturday and Caz is first to arrive, she calls us and tells us the nurses are advising us all to get there as soon as possible as they think she may have just hours to live.
The drive is surreal, I drive dad, I cannot believe I am driving to my mothers death. She is barely conscious, her face sunken and skeletal, her skin waxy and pale stretched taught. Her body seems shrunken somehow under the pretty patchwork quilt the Hospice have used on her bed. Her medication is hidden in a small floral fabric bag. The driver buzzing and plunging on a regular cycle releasing painkillers, morphine, anti-terror medication. The bed creaks and whooshes mysteriously as the mattress bubbles and moves with air to keep her comfy and above the door the clock ticks loudly, marching time ever forwards.
She calls us all together, we weep, she moans softly, we hug and share our love with her. We gather around her bed, none of us sit, noone wants to be below her sight line. She has things to say, unfinished business maybe, she calls for my niece Hannah again and again but we can’t tell what she wants to say to her. My ten year old nephew is to scared to come into the room. Then once again she slumps back onto her cushion, eyes glazed, hooded, her mouth gapes open as she breathes almond scented morpheous breath which fill the room and clings to our nostrils well into the night as she survives another day.
Sunday, we drive with heavy heart to the Hospice expecting the worst and find her more alert, gesturing to us and gently moaning words we can only occasionally understand. She wants to come home, she asks dad if she can, she thinks he has forgotten her morphine. Is she in pain, she cannot tell us. Occasionally a spasm flits across her forehead, fear? Pain? Fustration? It is difficult to tell, her drugs are increased a cocktail to make her passage more serene.
She can no longer drink, not even from the childs spouted mug we have been using thus far. We gently dip small square sponges on sticks into iced water and she endlessly sucks on them trying and elevate her thirst. She has not eaten since Friday morning but now she asks for mushy peas, her first coherent sentence and it makes no sense at all. 45 years my parents have been married and most of that time spent in each others company and not once has my dad heard her mention mushy peas let alone eat them but today she does, she sucks in two small teaspoons full that leave her mouth sticky and green.
Chris, her brother calls, he sounds low, he wants to visit. He arrives in record time, I fear it is a terrible shock, we have all watched mums decline physically for those who have not seen her it must be unbelievable. He leaves in tears and we all know that our next meeting will be at her funeral.
The 5th November, still she clings to life by a fragile thread. Dad and I arrive early at the hospice to find her in some distress. Even in her semi conscious state she is aware that her catheter has slipped and we leave to look at each other over coffee in the day room as the nurses change the sheets and bathe her. They use her own sponge and massage our aromatherapy mix into her arms and legs, they change her nightie and slip on the pretty bed jacket Dad had bought for her the week before. They refill her pineapple juice and water. They have not replaced her catheter, she is now in a semi coma and they feel her organs will be closing down and have placed an absorbent sheet under her incase.
All is peaceful we don't talk just listen to her steady breath followed by a pause that leaves us breathless and panicy and then once more her breathe returns to her own rhythm. Her chest gurgles now and she tries to cough, she is given more medication to try and stop the body from secreting to much mucous.
At midday she awakes and is desperately trying to tell us something and we try desperately to understand her. On instinct Dad checks her sheet and finds it damp, even in this somnolent state she is aware. The next shift of nurses arrive and take the decision to recathetrise her and her dignity is temporarily restored once more.
The Doctor visits. He is precise, tailored and efficient. Dying is a hugely complicated affair it would seem, not just a matter of gently drifting off on a fluffy cloud to the sound of celestial harps. The body closes down the organs but the heart will keep beating and the body will not die unless the spirit is ready and clearly for Mum the time is not yet here.
Dad and I decide to stay at the hospice in the visitors room downstairs. We order Chinese in whilst a nurse sits quietly with mum in our absence. Then to bed. The nurses wheel a bed into mum’s room for dad and tease him about his pyjamas! I leave him and go downstairs to the bedrooms for visitors on the lower floor of the hospice.
At some hour in the night I see a shadow at my door a figure silhouetted behind the glazed panel. I assume it is Dad, I check the clock 4am. It is the nurse telling me I need to come upstairs quickly, that they feel the end is close by, how many more times can we be this close to death and yet survive it. I pull my dressing gown on, my head reeling and spinning trying to wake up and register what she is telling me. I can’t find my slippers and absurdly this fact brings tears to my eyes. I follow the nurse on barefeet into the lift that takes us from the lower level of treatment rooms and offices up to the bedded unit, she holds my hand quietly and I stare ahead at the grey metal doors aware of the a coldness seeping through the soles of my feet. The corridors upstairs are quiet and have a different energy, a quietness and peace that is not present downstairs. Tiny coloured glass lanterns light the walls creating an almost surreal effect and it is easy to imagine and feel the energy of all those souls who have passed on floating in that moment.
The room is quiet apart from mum’s breath and the shallow ticking of the clock, it is as if all our senses are heightened in awareness, maybe it is the hallucinatory tiredness and the complete surrealness of the situation that causes this to happen. Dad holds mum close leaning over the anti fall bars and gentling cradling her as I come closer I can hear her breathing change slightly in rythmn and she relaxes and sleeps once more. The nurse smiles and nods and leaves the room and I lie on the recliner chair and breath in the morpheous air my breathing rising, faltering and halting with hers.
Tuesday 6th November 9:05pm
Still we await a conclusion to this nightmare. Mum is very distressed today and I feel as if she is trying to tell us something. Dad has asked the hospice chaplain to perform communion and once again we gather as a family and put our own religious beliefs and ideas to one side and draw together for her sake, to help her move on. She moans gently through the service. I can’t tell if this is her way of joining us in prayer or if once again she is trying to tell us or Ben, the chaplain or maybe God something that we just can’t quite hear or understand.
Her kidneys are failing now, her urine output is almost zero. Outside fireworks pop and burst in the crisp black November sky and the smell of their powder fills the air. Inside Mum’s breathing has struck a different tempo as if trying to keep pace with the percussion that accompanies her death from outside the window. It is fast and very shallow and the phlegm that has been building up daily despite the medication rattles, gurgles and rasps in her throat making me want to clear my throat constantly as if this act will somehow clear hers. She moans occasionally but does not seem to be scared infact despite the speed of her breathing she seems relaxed. Dad and I talk to her quietly, we ask her to be at peace, to seek out the light and to let go and move towards it. She moans a little and then the terrible gurgling resumes and we both wipe tears from our eyes and resume our vigil.
I feel like I have written this a thousand times….why? Why her? Why now can she not let go? I look at Dad and I can see the tiredness in his eyes the tension in his neck and shoulders the greyness of his skin and I can feel it reflected in myself. I know we both wish she would close her eyes a last time and just let go of this physical world and move on the next part of her journey.
9:50pm
Our wishes are granted unexpectedly. Dad rises to go downstairs to shave and wash and mum suddenly sits up in bed, the nurses exchange a glance that tells dad and I more than any words that they might say. Mum is still upright her eyes glazed and staring her skin almost glowing a waxy pale hue and she struggles, grasping for breath, short sharp intakes. We hold her close between us and at last she lets go. At last after five years she is at peace. She still looks the same and I am struck by the complete abscense of noise now her drugs driver is off and her breathing has stopped. We both watch her chest waiting to see if she will start breathing again but her fight is over.
She is bathed by the nurses and then laid out in a small room next to the one I have been sleeping in on her own pillow. They place a single lily stem on her pillow and a small butterfly motif on her door to tell those passing that she has moved on.
It feel so strange now. The house is full of people, I can’t help smiling, Mum would have loved it. We are putting together a collage of pictures of her which means that we are all able to start gently remembering her as she was before this hideous, pernicious disease ravaged her body. We cry. Everything feels completely out of body yet as a family we go through the motions. I remember thinking I should be feeling something and yet my body was numb. We are planning a funeral, we are planning my mother’s funeral. We are meeting florists, undertakers, caterers. We are choosing coffins, printing and stapling an order of service, Dad is writing a eulogy, how do you sum up over forty years of marriage on a sheet of A4?
Dad asks if we will sort out her clothes and personal bits and take what we would like to keep before the funeral so my sister, neice and I start the grim task. The various outfits bringing back memories of happier times tinged with immense sadness that we will never share a birthday, anniversairy or christmas with her ever again. I feel an indescribable heaviness as we put her make up and brushes, her soft bras and white pants into unforgiving black bin liners. We weep and laugh as we grieve and remember.
The funeral. A church so packed tight with people I feel overwhelmed. Caz and I holding hands tightly following Dad behind the beautiful willow coffin we have chosen adorned with Dad’s tennis raquet flower wreath. I feel strong as I step into our pew but as the organ swells and the first hymn starts I feel the tears burning, welling and then bursting out as I can almost hear mum singing one of her favourite hymns alongside us.
My husband Ian reads Dad’s tribute beautifully, I can feel the congregation absorbing each word. My brother in law, David’s scottish lilt suits the Pilots Psalm so well and lovely Ben, the chaplain from the hospice reads the poem that none of us can read through without crying.
On the front of the order of service are the words that mum had written on a small card and kept beside her bed for months and which obviously gave her great comfort.
‘Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go’ Joshua 1.9
And now I am at home and instead of being easer it feels more raw, more difficult, the reality begins to seep in. I have spent the last three years staying over with Mum on a regular basis. I have spoken to her every day on the phone. I feel wrung out and empty and a little bit lost.
Sometimes I feel that I could lift up the phone from its cradle and that she would be there at the other end, that I could talk to her again and share all the inane, everyday minutia of my life that only she was interested in. I miss her every minute of every day. I still cannot believe that it is likely I will never see her again despite my father’s strong belief to the contrary.
We have survived Christmas and so the year draws to a close I am in bed with the flu. I have had to move to the spare room as Ian’s breathing with his own cold reminds me of mum in her final days and is provoking terrible nightmares. 6.30am it is dark outside and suddenly there is a flash that lights the world and a storm of epic proportions slams around the house and the sky thows what feels like great lumps of ice at us. I sit awestruck, will I ever feel at peace again? I cannot remember feeling normal.
So the new year unfolds I write this alone upstairs, I have left Ian downstairs. I feel safer alone, I find that I feel threatened by people and places now. I would just like to curl up in a warm place, close my eyes for a while and escape. The last few years have left me feeling like the whole world has been decieving me. I have always relied on my eternal optomism but I feel as if all trust has been punched out of me and I don’t know how, when or if it will ever return. It feels like everyone is on the take and on the make; from the guys who burgulared our house recently and violated us, to the staff at our business who seem to me unable of making a decision without me. The builders who abuse our trust in the guise of friendship whilst undertaking work for us. The sales people who ring late at night and push us towards decisions we don’t want to make. The friends who obligate me and pressure me, the customers at our shop who want everything for as little as possible, the competitiors and bank managers. Doom, gloom, bad news, illness and death seems to hang about me in an invisible gossamer web. I am finding it difficult to find the point of exsistence in this useless mono cycle we call life. I never do anything that makes me feel content and happy, I feel like there has been no space or time to do so. I miss mum so badly, so often and I feel so fustrated that all the fight she put in and the care we took with her was ineffectual, a complete waste of time and energy another pointless exercise with no advantages for any of those partaking. That is how I feel now, what is the point, nothing seems worth the effort as it will only be wrecked in the end better to not embark on any more epic journeys as they are doomed to failure. Enertia rules.
Common sense struggles to regain a foothold, a small distant voice calls to me and tries to council me from a faraway place but I don’t want to listen, I truly want to be in this dark grim hole I find myself, I don’t want to listen and if I am truly honest I just don’t care. The truth is I feel a need to keep on thinking about mum, to keep testing the rawness of this feeling of grief. To keep picking at the edges of the scab and feel that acute pain as its biscuity crust pulls and rips away from the skin. I want to feel the warmth of the blood as it trickles over my skin, I want to taste its saltiness. I want to feel the tears pricking behind my eyes and feel them fall hot and wet onto my cheeks, I want to live this pain to feel that what has taken place is real and has a place in my world.
I walked on the beach today and it surprised me to feel the wind and rain hit me full on as I came over the pebble ridge and saw the sea grey and churning ahead of me. The wind buffeted me and caused me to bend double from the waist pushing against it. I felt almost as if I could lie against it. It would be interesting to see if this world I live in could support me against gravity in this new form I am presenting to the world.
A long time ago I felt calm, happy and optomistic. I watched the waves wash up on this beach and I heard the gulls calling in the blue sky and felt a deep sense of peace. The sea is as grey as the sky today and the wind crashes into the gulls so all their focus is on flying their cries are lost amid the crashing of the waves.
I was no use pretending to feel something I didn’t feel, the feeling of guilt is all pervasive, it manipulates how I present myself in the world. When time is needed for reflection and calm and I have a pressing need for solitude and loneliness it is difficult to close those around me out. I feel selfish in the extreme for not allowing for their needs. This feels immense like standing on the edge of a sheer drop. I don’t want to live by everyone elses rules, I want to do what I want to do. When I reflect on my life now I don’t think there are many periods when I can say I was totally happy. If nothing else comes from mum’s death I want it to be an empowering experience, I want to live properly in the world not lurk around in the shadows.
The dynamics of a family change so much when a death occurs within its epicentre. The structure, strengths and weakness shift and change. Family memebers jostle with their individual grief process and undertake new roles not always of their choice and they have to find new and different ways to relate to one another.
It is the emptiness I find disconcerting, I suddenly am aware of how much mum completely filled a space, her space, her house, our house, our family. Her energy enveloped us all and touched us in every corner of our lives. My father still has some old toys of mums, they sit in a line on his bed. A motley bunch they are too, patched and worn, eyes missing, noses squashed but this is surely a testament to a life that once must have been filled with love and laughter and as I look at them I begin to feel a warmth in my stomach that has been missing for a very long time.
I begin counseling at the Hospice to try and make sense of what is happening to me.
Today was a strange day, Dad has been keeping a ‘secret’ . For over a year he has been suffering with a hernia which he did not want to address as he knew this could impede his own ability to care for mum. So this morning at 7.30am we arrive once more at Barnstaple hospital. The whole experience has a slight out of body feeling about it and we are both quiet with our own thoughts. Everything seems so familiar and yet so strange. It feels as if mum is around a corner. By some miserable quirk of fate Dad is put into Room 5 on the Roborough Suite, a room mum was in one of the many times she was admitted with neutropenia last year. She stayed in this room for just over a week. I look at the locker and expect to see her book, bookmark in the same spot as she could’t read at all as her eyesight was failing in the later part of her illness but she was determined not too admit it. I can see her lipsalve, her tissues, her glasses it is all there as a mirage before me. I could blink and she would be here. Some of the nurses are the same, the catering lady remembers us and asks how mum is, I feel tears threatening and blink frantically. Dad looks small and scared his forehead lined it is if he has doubled in age. As I leave the hospital and Dad to his op memories overcrowd me, the Tarka hospital radio booth seems so familiar, the shop and as I insert my ticket into the pay booth for the carpark emotion overwhelms me and I have to hold tight to reality as I have a strong urge to turn expecting to see mum sitting in her wheel chair inside the door, basket on her knee containing her water bottle and paper and her cushtie pillow. On her head her blue scarf, her ‘chemo’ cardie as we joked it was called as she always wore it on treatment days and she would smile and half wave at me as I set off to the car park. But today she is not there, the hall is deserted and I find again my mind whirring with memories. I only realised in this last month that I think or rather I was thinking about her every minute of every day and it is only in the pauses now that I realise how much she is still on my mind and how hugely I miss her.
Dad is fine back at home and I am once again at my home but finding it difficult to cope. I feel once more that I would like to curl up small and sleep forever. To close my eyes and enter a twilit dream world that bobs by without disturbing my equilibrium. Tears are with me constantly today, my mouth feels shut tight like a clam, I can feel saliva filling it but I can’t even be bothered to swallow. A headache again for the fifth consecutive day bangs and twists at the base of my skull. I feel devastated that my mother is gone forever, and yet I feel a tiny slither of relief that the worst has happened it cannot get any worse than that infinite moment in time.
I find I keep remembering my childhood now. Homesickness at boarding school, hiding in small dark places and holding my arms around my body tight hoping to turn inwards away from the world. By keeping silent and still people will walk by and not see me as I blend into the background. The smell of the laundry room at school, piles ofsoiled pants and stiff socks hurled floating down as pounding feet rush to breakfast. Leaping from rock to rock by the sea behind my maternal grandfather, dipping green nets in shaded fronding rockpools on the way and then I am looking back to the beach where I can see my mother pinned by the sun on a sunseat surrounded by bags and towels the necessary luggage for a day out with two small girls. A bonfire, autumn leaves, bicycles. Mum dancing swinging her hips and shoulders, making clicking noises with her mouth along to the music, Sasha Distel. Dad’s sideburns brushing my cheek. Memories of before her illness suddenly begin to release themselves gradually like air in water bubbling to the surface.
At some point during this period I have a small revelation. I could use all this heartache, angst and grief. I could use my jottings to write a story that is aching to come out and share it with others.
Life does inevitably move forward, time marches on and it does bring comfort, sometimes in the most suprising ways. I will not tell you more, you will discover that when your own time comes. The jigsaw of our family has been hurled to the floor but we are moving forward and replacing the lost pieces gently with new ones. My father has found a new lady friend and although this has caused many emotional conversations as my sister and I try and reconcile this with the loss of our mum his attitude is right. He gave everything he could in his caring for mum and he loved her deeply. Through the darkness of her illness he has come to realise that life is short and that we all have a choice now. We can stand on the byline and watch it pass us by. We can wallow in alcohol, drugs, tears and melancoly to try and escape our pain or we can step up and take our place once more in this world and live within it.
I have learnt through my own councilling that only I am responsible for me. I can, if I wish, use this experience to really find out who I am and to learn to love myself. If I succeed it will not matter what the world thows at me, I will not be let down because I believe in myself. I know this is what my mum would want, us all to be happy.
We all have real choices in the world it is just sometimes difficult to make them but we can make them happen. For my family and probably many who are reading this we have all lived with and through the darkness of Cancer. I for one am not going to let that disease take my life as well as mums so I am going to try and start each day afresh and look at the world and try and find the positive. I am going to share my experience with others in the hope that it helps with some of the questions that one is afraid to ask about the practical side of dying.
I have seen death close up and it was not peaceful as I had hoped it was a painful struggle not just for my mum but for my dad, my sister and all of the family. I watched my mother die but it will not be in vain, I will try and live in her memory, step out of the darkness and enjoy the rest of my life to the full. And if the going gets tough I will forgive myself and remember that my mum is still with me every step of the way.
2010
I still miss mum every day but I have started on a new adventure and am now a glass artist, the melting of rods of soft glass to create beads proving a very therapeutic way of moving on and her death has been the catalist to this new life I have. No time to think to hard whilst that glass drips and melts. I have a small Studio in Appledore, in North Devon and I sell from an online shop www.raspberryrings.etsy.com and via a business page on FB www.facebook.com/raspberryrings
Dad remarried this year and is happy again and for me life is moving in a different direction. My sister and family have relocated to the US so live has truly changed for us all. So what advice would I pass on to those suffering the grief of this awful illness.....I truly believe we each have our own paths to live and we must be strong in ourselves as you just don't know what is around the next bend in the road.....
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The following piece I found on the internet and it helped me greatly it answered a lot of the questions One is too afraid to ask.
APPROACHING DEATH
When a person enters the final stage of the dying process, two different dynamics are at work which are closely interrelated and interdependent. On the physical plane, the body begins the final process of shutting down, which will end when all the physical systems cease to function. Usually this is an orderly and undramatic progressive series of physical changes which are not medical emergencies requiring invasive interventions. These physical changes are a normal, natural way in which the body prepares itself to stop, and the most appropriate kinds of responses are comfort enhancing measures.
The other dynamic of the dying process at work is on the emotional-spiritual-mental plane, and is a different kind of process. The spirit of the dying person begins the final process of release from the body, its immediate environment, and all attachments. This release also tends to follow its own priorities, which may include the resolution of whatever is unfinished of a practical nature and reception of permission to “let go” from family members. These events are the normal, natural way in which the spirit prepares to move from this existence into the next dimension of life. The most appropriate kinds of responses to the emotional-spiritual-mental changes are those which support and encourage this release and transition.
When a person’s body is ready and wanting to stop, but the person is still unresolved or unreconciled over some important issue or with some significant relationship, he or she may tend to linger in order to finish whatever needs finishing even though he or she may be uncomfortable or debilitated. On the other hand, when a person is emotionally-spiritually-mentally resolved and ready for this release, but his or her body has not completed its final physical shut down, the person will continue to live until that shut down process ceases.
The experience we call death occurs when the body completes its natural process of shutting down, and when the spirit completes its natural process of reconciling and finishing. These two processes need to happen in a way appropriate and unique to the values, beliefs, and lifestyle of the dying person.
Therefore, as you seek to prepare yourself as this event approaches, the members of your Hospice care team want you to know what to expect and how to respond in ways that will help your loved one accomplish this transition with support, understanding, and ease. This is the great gift of love you have to offer your loved one as this moment approaches.
The emotional-spiritual-mental and physical signs and symptoms of impending death which follow are offered to help you understand the natural kinds of things which may happen and how you can respond appropriately. Not all these signs and symptoms will occur with every person, nor will they occur in this particular sequence. Each person is unique and needs to do things in his or her own way. This is not the time to try to change your loved one, but the time to give full acceptance, support, and comfort.
The following signs and symptoms described are indicative of how the body prepares itself for the final stage of life.
Coolness
The person´s hands and arms, feet and then legs may be increasingly cool to the touch, and at the same time the color of the skin may change. This a normal indication that the circulation of blood is decreasing to the body’s extremities and being reserved for the most vital organs. Keep the person warm with a blanket, but do not use one that is electric.
Sleeping
The person may spend an increasing amount of time sleeping, and appear to be uncommunicative or unresponsive and at times be difficult to arouse. This normal change is due in part to changes in the metabolism of the body. Sit with your loved one, hold his or her hand, but do not shake it or speak loudly. Speak softly and naturally. Plan to spend time with your loved one during those times when he or she seems most alert or awake. Do not talk about the person in the person’s presence. Speak to him or her directly as you normally would, even though there may be no response. Never assume the person cannot hear; hearing is the last of the senses to be lost.
Disorientation
The person may seem to be confused about the time, place, and identity of people surrounding him or her including close and familiar people. This is also due in part to the metabolism changes. Identify yourself by name before you speak rather than to ask the person to guess who you are. Speak softly, clearly, and truthfully when you need to communicate something important for the patient’s comfort, such as, It is time to take your medication, and explain the reason for the communication, such as, so you won’t begin to hurt. Do not use this method to try to manipulate the patient to meet your needs.
Incontinence
The person may lose control of urine and/or bowel matter as the muscles in that area begin to relax. Discuss with your Hospice nurse what can be done to protect the bed and keep your loved one clean and comfortable.
Congestion
The person may have gurgling sounds coming from his or her chest as though marbles were rolling around inside these sounds may become very loud. This normal change is due to the decrease of fluid intake and an inability to cough up normal secretions. Suctioning usually only increases the secretions and causes sharp discomfort. Gently turn the person s head to the side and allow gravity to drain the secretions. You may also gently wipe the mouth with a moist cloth. The sound of the congestion does not indicate the onset of severe or new pain.
Restlessness
The person may make restless and repetitive motions such as pulling at bed linen or clothing. This often happens and is due in part to the decrease in oxygen circulation to the brain and to metabolism changes. Do not interfere with or try to restrain such motions. To have a calming effect, speak in a quiet, natural way, lightly massage the forehead, read to the person, or play some soothing music.
Urine Decrease
The person´s urine output normally decreases and may become tea colored referred to as concentrated urine. This is due to the decreased fluid intake as well as decrease in circulation through the kidneys. Consult with your Hospice nurse to determine whether there may be a need to insert or irrigate a catheter.
Fluid and Food Decrease
The person may have a decrease in appetite and thirst, wanting little or no food or fluid. The body will naturally begin to conserve energy which is expended on these tasks. Do not try to force food or drink into the person, or try to use guilt to manipulate them into eating or drinking something. To do this only makes the person much more uncomfortable. Small chips of ice, frozen Gatorade or juice may be refreshing in the mouth. If the person is able to swallow, fluids may be given in small amounts by syringe (ask the Hospice nurse for guidance). Glycerin swabs may help keep the mouth and lips moist and comfortable. A cool, moist washcloth on the forehead may also increase physical comfort.
Breathing Pattern Change
The person s regular breathing pattern may change with the onset of a different breathing pace. A particular pattern consists of breathing irregularly, i.e., shallow breaths with periods of no breathing of five to thirty seconds and up to a full minute. This is called Cheyne-Stokes breathing. The person may also experience periods of rapid shallow pant-like breathing. These patterns are very common and indicate decrease in circulation in the internal organs. Elevating the head, and/or turning the person onto his or her side may bring comfort. Hold your loved one’s hand. Speak gently.
Normal Emotional, Spiritual, and Mental Signs and Symptoms with Appropriate Responses
Withdrawal
The person may seem unresponsive, withdrawn, or in a comatose-like state. This indicates preparation for release, a detaching from surroundings and relationships, and a beginning of letting go. Since hearing remains all the way to the end, speak to your loved one in your normal tone of voice, identifying yourself by name when you speak, hold his or her hand, and say whatever you need to say that will help the person let go.
Vision-like experiences
The person may speak or claim to have spoken to persons who have already died, or to see or have seen places not presently accessible or visible to you. This does not indicate an hallucination or a drug reaction. The person is beginning to detach from this life and is being prepared for the transition so it will not be frightening. Do not contradict, explain away, belittle or argue about what the person claims to have seen or heard. Just because you cannot see or hear it does not mean it is not real to your loved one. Affirm his or her experience. They are normal and common. If they frighten your loved one, explain that they are normal occurrences.
Restlessness
The person may perform repetitive and restless tasks. This may in part indicate that something still unresolved or unfinished is disturbing him or her, and prevents him or her from letting go. Your Hospice team members will assist you in identifying what may be happening, and help you find ways to help the person find release from the tension or fear. Other things which may be helpful in calming the person are to recall a favorite place the person enjoyed, a favorite experience, read something comforting, play music, and give assurance that it is OK to let go.
Fluid and Food Decrease
When the person may want little or no fluid or food, this may indicate readiness for the final shut down. Do not try to force food or fluid. You may help your loved one by giving permission to let go whenever he or she is ready. At the same time affirm the person s ongoing value to you and the good you will carry forward into your life that you received from him or her.
Decreased Socialization
The person may only want to be with a very few or even just one person. This is a sign of preparation for release and affirms from whom the support is most needed in order to make the appropriate transition. If you are not part of this inner circle at the end, it does not mean you are not loved or are unimportant. It means you have already fulfilled your task with your loved one, and it is the time for you to say Good-bye. If you are part of the final inner circle of support, the person needs your affirmation, support, and permission.
Unusual communication
The person may make a seemingly out of character or non sequitur statement, gesture, or request. This indicates that he or she is ready to say Good-bye and is testing you to see if you are ready to let him or her go. Accept the moment as a beautiful gift when it is offered. Kiss, hug, hold, cry, and say whatever you most need to say.
Giving Permission
Giving permission to your loved one to let go, without making him or her guilty for leaving or trying to keep him or her with you to meet your own needs, can be difficult. A dying person will normally try to hold on, even though it brings prolonged discomfort, in order to be sure those who are going to be left behind will be all right. Therefore, your ability to release the dying person from this concern and give him or her assurance that it is all right to let go whenever he or she is ready is one of the greatest gifts you have to give your loved one at this time.
Saying Good-bye
When the person is ready to die and you are able to let go, then is the time to say, Good-bye. Saying Good-bye is your final gift of love to your loved one, for it achieves closure and makes the final release possible. It may be helpful to lay in bed and hold the person, or to take his or her hand and then say everything you need to say.
It may be as simple as saying, I love you. It may include recounting favorite memories, places, and activities you shared. It may include saying, I ’m sorry for whatever I contributed to any tension or difficulties in our relationship. It may also include saying, Thank you for...
Tears are a normal and natural part of saying, Good-bye. Tears do not need to be hidden from your loved one or apologized for. Tears express your love and help you to let go.
How Will You Know When Death Has Occurred?
Although you may be prepared for the death process, you may not be prepared for the actual death moment. It may be helpful for you and your family to think about and discuss what you would do if you were the one present at the death moment. The death of a hospice patient is not an emergency. Nothing must be done immediately.
The signs of death include such things as no breathing, no heartbeat, release of bowel and bladder, no response, eyelids slightly open, pupils enlarged, eyes fixed on a certain spot, no blinking, jaw relaxed and mouth slightly open. A hospice nurse will come to assist you if needed or desired. If not, phone support is available.
The body does not have to be moved until you are ready. If the family wants to assist in preparing the body by bathing or dressing, that may be done. Call the funeral home when you are ready to have the body moved, and identify the person as a Hospice patient. The police do not need to be called. The Hospice nurse will notify the physician.
Thank you
We of Hospice thank you for the privilege of assisting you with the care of your loved one. We salute you for all you have done to surround your loved one with understanding care, to provide your loved one with comfort and calm, and to enable your loved one to leave this world with a special sense of peace and love.
You have given your loved one one of the most wonderful, beautiful, and sensitive gifts we humans have to offer, and in giving that gift have given yourself a wonderful gift as well.
Copyright © North Central Florida Hospice, Inc. 1996 Please note: These articles are being made publicly available in the hope that they benefit others in the hospice community. Feel free to use them provided you credit Hospice of North Central Florida with sole authorship and do not alter the content. Please include this note in any copies you choose to make. Thank you.
