Losing Mum

My mum died on Sunday 26th October at 23.00. The death certificate states she died the next day as the doctor took a while to get to her, he said he was sorry for our loss but he was busy.

I feel like I’m walking around in a different season or maybe in a different world completely at the moment. It’s not the same here without my mum, but nobody seems to know that, life goes on just like it did the day before she died. Everybody is moving far too quickly and I can’t seem to keep up, time is running away with itself while I am standing still. Life for me at the moment is like watching a movie, I can see what is going on but I’m not really in on the act, I’m sure the credits will roll at some point.

I have thrown myself into being busy, too busy to think, too busy to face anything I can’t face right now. I’m cleaning out mum’s flat with my sister, I’m sorting our mum’s stuff like it belongs to a stranger. There are moments when I pick up some clothes, a jacket or cardigan, and sniff at the collar like a dog looking for a scent. I want to breathe in her smell and feel safe within it again, I close my eyes and imagine she is there with me. But the moment passes and I continue sorting the junk from the jewels.

We stayed those final days in the hospital with mum, the doctor called for the family although we had been there every day. I sat on a chair at the end of her bed and watched her sleep. Those last few days she slept a lot, she was preparing herself for the journey ahead. The day before mum died, she said to the nurse she wanted to press a button and be dead. She had fought the cruel disease for eleven years until the day she wanted to die. Minutes before mum died I prayed for her, I prayed the suffering would end and she would pass over easily. I moved a bottle of spring water that was blocking my view of her lovely face, she told me off for disturbing her. I remember thinking to myself that she never told me off, we couldn’t really do anything wrong in our mum’s eyes.

We called for a nurse as mum needed her morphine injection. It didn’t help this time, she needed something much stronger to help. When the nurse went to get it mum started to pass over. It took minutes, but time stood still, minutes turned into something much longer as we watched our mum die. We tried to help her to go without us, we told her to go and that we would be okay. We told her we loved her and thanked her for being our mum. We were trying to tell her how much we loved her, we didn’t want her to go missing anything, we didn’t want her to forget. She knew we loved her, we didn’t have to say but we both needed to, we wanted to say it for the last time. I have worried since that I was on her deaf side and maybe she couldn’t hear me.

I don’t know the actual moment mum went and if some of those last drawn out breaths were just the body doing what it had done for so long. Were the lungs just responding as they always had while the blood slowed down on its final journey around her body. I don’t even know how she died, was it the lungs or her heart that finally gave up?

I’m not sure what happened right then, my body shook uncontrollably and I couldn’t stop my arms and legs from moving. My sister wanted to help me but also wanted to stay with mum. I didn’t want to be selfish, I just couldn’t help myself. My son said afterwards it sounded like a response to the shock. I’m not sure why I was shocked, I was expecting mum to die, I had prayed for her to be out of pain but I just couldn’t cope with the reality of it actually happening. Losing the one person who had loved me from the very moment I was born.

We stayed with mum for a while, she looked beautiful, she was always beautiful. The lines and the constant daily pain faded from her face and she looked at peace at last. We knew she wasn’t really there anymore, the body was just a vehicle but how we had loved that body, we had both lived in that body for a while. I told the nurses that my sister and I would clean and dress mum, but my sister told me I wouldn’t manage it, she told me to go. I sat in the family lounge while my sister got mum’s body ready for the morgue, she called my mobile to ask what mum should wear . I remember looking up the train times on my phone while I waited.

Three weeks later now and I haven’t cried properly yet, I’m frozen. I think I have put up a wall to protect myself, as I just can’t deal with the reality of mum dying, I can’t cope with it. I understand trauma a little and know this is just my body looking after my mind but I want my mind back. No, that’s not right, I’m in denial and what I really want is my mum back.

Looking out for Martha

Martha makes a horrendous noise when she yawns. It is because she can’t get enough air into her lungs and this is the noise her body makes. It is terrifying to hear but what frightens Anne, her daughter, is that it has become an every day noise. When Martha made the noise today in the bathroom, Anne’s son ran from his room to check she was okay. Anne saw fear etched on his face, as he asked his Nan if he could help. She heard herself saying ‘Its okay love, Nan does that all the time’. She wondered when she became so immune to her mother’s illness, when did the pain she goes through on a daily basis become acceptable.

Martha was diagnosed with a lung disease 10 years ago. At that time they told her she had no time left, she was in such poor condition. Martha has defied the specialists and the disease in some way. Although she is in the later stages of the illness now, her amazing and powerful spirit is still fighting. As a family, they have had plenty of time to get used to the illness and know what Martha needs. The number one thing is love, but they also recognise and meet all her other needs.

The autoimmune disease Martha has affects so much of what the family does now. Winters are long and spent inside the home, as Martha cannot venture out in the cold. It’s not only the weather but also the fear of catching the winter viruses that imprisons Martha. She lives for the summer, warmth on her face and vitamin D for her bones. Anne feels her mother’s frustration during those winter months and wants to be able to make her happy in any way she can. Anne feels guilty that she can run around town and enjoy the fresh air but Martha always insists that she does.

It is not often Martha and Anne visit a café anymore, maybe only on hospital visits these days. But when they are in café and Martha has a coughing fit, Anne can see herself waving the waiting staff away when they attempt to help by bringing water. It is not that she is not grateful for their kindness but she knows it is not water her mother needs, coughing is what she does all day, every day. People and the germs all around are as dangerous to her autoimmune disease as anything else, so Anne attempts to keep them away and shield her mother. She has come to recognise the coughs and would know if her mum was in trouble, Anne hopes to god that’s the case anyway. Anne believes she must look like the daughter from hell to strangers, she doesn’t really care what she looks like to other people as long as what she does for her mum is right.

If Anne is honest, she has in fact always cared what she looks like to others. She has always wanted to be accepted and approved of, but she has also learnt to put these feelings aside for now. It is not about her at the moment, what is important is what she can do for her mum.

Martha is fiercely independent and when she goes to any of the many hospital appointments, she likes to go into her consultations on her own. Martha says there will come a time when she needs Anne with her, but until then she wants to be able to manage by herself. Anne understands this but it does not mean she doesn’t sit in the waiting room wanting the floor to swallow her up sometimes. She feels the looks and almost hears the thoughts of the people who witness her remaining seated while allowing her mother to struggle across the room trailing her oxygen cylinder. Anne wants to shout, ‘she won’t let me go with her’, but she wouldn’t dream of causing a scene. For now she needs to harness the same strength as her mother.

Oxygen

They delivered the new oxygen today.  As well as the small cylinders you have got used to, they delivered a concentrator, a large box that takes oxygen from the air. You didn’t want it, but it was necessary as you have required more and more oxygen to do the simple things you used not to think about.  You hated it, you said you felt like you were a dog on a lead being attached to the box wherever you went.  I tried to make light of it, look for the silver lining we usually find at difficult times, but it wasn’t easy today.  I said it only meant getting used to something different, that it would make life easier when you didn’t have to wait around for your oxygen to be delivered.  I reminded you of how you would start to get a little stressed and anxious if you ran low and this wouldn’t be a problem anymore now that the oxygen was on tap.

I felt helpless when I saw you were tearful.  It’s so easy for me, who can run around town in no time at all to tell you everything will be alright.  We know it won’t, you will need oxygen now for the rest of your life.

It’s spooky in a way that you had claustrophobia all your life, that the thought of not being able to breathe was your worst nightmare.  You have lived an exceptionally healthy life and end up with an incurable and hateful lung disease.   It’s like from childhood you subconsciously knew what was to come.  When I think of your illness I often think of the stories of you as a child, licking salt from the factory walls or wearing the old gas masks you told me about.

I took you for a drive today, I thought the sun being out would cheer you up and it did.  We drove down the coast a little to a town with some tearooms.  Finding a disability parking space wasn’t a problem now we have the badges.  I set up your cylinder on the trolley and off we went to attempt a walk.  We stopped for coffee and cake, it was lovely although a little on the generous side.  Walking back towards the car, you were very slow, you stopped, you had nothing left in you and had to sit on a bench for a while in the graveyard.  In setting up the oxygen, I had forgotten to turn the bloody thing on.  I felt awful, putting that stress on your poor body, another reminder of how healthy I am in comparison.

On the journey home, you said you realised now how awful it was for dogs to be on leads.  You’re nothing like a dog mum, however beautiful you think they are, there are no similarities.

You used the concentrator again tonight. I hope it gets easier to live with and you can feel a little happier in yourself.   I suggested you put the tubing over your shoulder so it would trail behind you and you wouldn’t trip.  There you go down the hall with the tube singing to yourself and me ‘over my shoulder goes one care, over my shoulder go two cares’ you’re amazing.

Tomorrow

Tomorrow you might not be here anymore.  Tomorrow might not be the day after today, but there will be a tomorrow when you are gone.  I can’t imagine a tomorrow without you, where you are not in my world.  But tomorrow can wait because you are here today.  Today I can talk with you and tell you all the things you need to hear, how very, very special you are.

Lets first start with yesterday, not the day before today but all our yesterdays.  How we have walked many paths of experience together, shared many smiles and laughed out loud together.  How on that first yesterday, the yesterday we met, you loved me from the moment you saw me.  I’m not sure I remember how I felt, but I’m sure it was the same because I don’t remember ever not loving you.  We have spent a lifetime together, my lifetime anyway.  I know you started yours before me and mine might go on a little longer but knowing you is as old as my bones.  You are my oldest memory, my first memory and my forever memory.  Yesterday you taught me kindness, I copied you and it was easy.  Yesterday you showed me love and empathy, and because I received it from you, it became easy for me to show it to others.  Yesterday you listened to me, you have always listened to me and I understand the importance of listening to others.  You taught me a lot and what did I give you in return.  Yesterday I taught you fear, from the moment we met I know you feared you might loose me.  You feared for my safety and feared I might be hurt, you feared that I would be sad.  I tested you a little along the way with that lesson.  You taught me a little of that fear too, I’m fearful now for you.

Today you are in my life, today I can touch you, hold you, smell you.  I can look into your lovely blue eyes, be warmed by your smile and hear your voice.  Today I can see an aura around you that glows golden with your beauty.  There are angels in your aura, they add to the shine, they bathe in the pureness of it.  Today I can care for you, be there and show you how very special you will always be.

I am going to put yesterday, today and tomorrow in a jar and shake them up.  Shake them so they mix together and become one.  Shake them until they melt into one place and time that we will always share.

My Mother’s Love

Mum, I have always written in your cards that I love you with all my heart, and I do, I love you deeply with my whole being.  I want to try and explain my love for you but it’s not an easy task talking about an emotion that is invisible yet at the same time tremendously powerful.  I have not experienced life without your love so its hard to fathom what that might feel like, maybe a big empty hole, falling forever with no attachment to bind me. Thinking back, I remember you used to say to us as children ‘I love you with all my heart and I did right from the start’.  I imagined, as a small child when you said it, you meant the start of time, because that’s how big, warm and safe it felt.  When I tell you I love you it does not seem enough, those are words used by everyday people and you are not an everyday person, you are so much more.  I could write about my love and appreciation for you until there were no trees left on the earth and a mountain of paper, covering the horizon and blocking out the sun and moon, but I’m not sure I could capture the words, I’m not sure there really are words in this world.

Your very poorly now and carry so much pain and yet you are so incredibly brave, you don’t dwell on that bastard illness, you fight it with that huge spirit of yours.  When you first got ill the doctors said at that stage you had no time left, but you were never having that, and went about visualising my sister Laura and I inside your lungs with cloth caps and brooms, sweeping out all the bad, singing as we worked and by some miracle we did it, you improved.  We know that it wasn’t really a miracle, it involved the power of thought, coupled with determination, and we know really it worked because of the magic of the love we share.  You are so brave, you sing to yourself now to help you to breathe easier and make the pain go away, you tell yourself, believe and sing about how happy and lucky you are.  In my minds eye, I can see you stooped and in awful pain struggling as you walk towards Green Lane singing your little song ‘I’m so happy’, it makes me want to cry, you crazy, wonderful, beautiful woman!  You see yourself dancing at Claude’s wedding, it’s a long way off but your sheer determination might get you there.

From the day I was born I know without a shadow of a doubt, that you have loved me every moment.  I know that you think of me shortly after waking, throughout the day and last thing at night.  Your love keeps me safe, I know that you think I am special and I can never really be lonely or lost in any way with your love around me.  I can’t describe to you how wonderful it has been to be in receipt of your love, it’s like I won the lottery of life having you as my mum.  You have always put me and Laura first, there is not anything you would not give up for your girls and grandchildren, you would go to the ends of the earth and back for each of us.  We know you would genuinely die for us, that you feel our pain every bit as much as we do and would willingly carry it for us.  It is lucky for all of us that you also share our joy, and our achievements are your best achievements.

Small things give you pleasure, being with your family, being together, sharing a meal and celebrating.  I get that now and it is what is important to me too, I wish I had understood that sooner.   You have a silly way of looking at us, full of love and pride, it used to embarrass me, now I embrace it.  I am turning into you in a little way, I hear you speaking when I speak to my son sometimes but your shoes are too big for me, I could never fit into them.  If only I could be as selfless and giving as you, more spiritual and less materialistic. I am trying, as to be a fraction as good a person as you would be amazing.

You are the most giving person and you are gentle and kind, passionate and full of empathy for others.  You’re interested in people, not in a nosey way but with concern, you share the troubles and joys of others, you grieve and celebrate and above all try to understand.  Your love is as big as the world and as warm as the sun and everybody who has ever known you would agree, we know there is a lot of love for Jean!

I speak to you every day, about six times occasionally but always more than once.   We are sometimes deep and meaningful and make sense of the world, put it to rights but often we talk complete mindless rubbish.  I know how much it means to you and that talking to your girls keeps you going especially now that awful illness is taking over more and more we are your lifeline and what keeps you going.  Mum, I have been meaning to say, you must change that voice mail message, I will help.

I’m frightened sometimes mum, I’m frightened of losing you, of not hearing your voice anymore of not making you laugh.  You might have years left, your spirit is still young, but I don’t want to leave it at that without telling you how special you are and how much you have given me.  I know that one day you will leave me for a while but you will always be there too, it’s what we believe and we will still talk, I’m absolutely sure of it.  You will just be in the next room, the door to that room will not be immediately accessible to me and take me some time to find, but I will find it and you will be waiting there for me.

Your love grows and spreads everywhere, you gave me and taught me empathy and I only work with troubled children now because of the understanding I got from you.  You showed me how to reach out to others, really listen and be interested enough to do something to help.  How to love, care, communicate and understand the needs of others, understanding the troubles and be there.  I’m sure your love is catching and I hope everybody comes down with it.  I am blessed to have you as my mum, the children I have worked with have benefitted in a small way because you are my mum.

Your beauty has no comparison in this world, the first sunrise, the deepest colour, the saddest song, and the brightest flower all diminish in your shadow.   I was right, there are not words to tell you how I feel, it’s big and warm and makes me cry and laugh at the same time.  I won the lottery that’s for sure, I probably jumped a few lifetimes with what you have managed to teach me and the world is a better place for having you in it.

I know that for as long as I live and long after I will be loved by you, and that love comes back at you mum, a million times.

Thank you mum