The worst choice

The only inevitability of life is death. We all know this. It doesn't ease the pain of the journey.


My father has been on this course of antibiotics for three and half days. They aren't working. Tonight we are told he probably won't get any better than he is now. He lies in a hospital bed struggling to catch his breath through the infection. Limbs diminished, bruised from nurses trying find a suitable vein, but still with a grasp surprisingly strong as he holds our hands. Does he know it us, what is happening to him?

This is the greatest loss I have ever faced, and I know it will be awful. Worse for Mum, the love of his life.

I will miss him.

This week there will be decisions to make. Keep him 'nil by mouth' while his lungs try to fight the pneumonia, and he is starved of food or let him comfort eat whilst the infection deepens filling his lungs and starving him of oxygen. How do we even begin to contemplate either?

I always imagined that my dad would walk me down the aisle, see his grand children find their way in the world, see me settled before leaving me. Instead, I sit here alone with my laptop and a glass of rioja for company wondering how much longer he will cling to life, to us.

Remnants

After years of this illness that is stealing you, I think much of my grieving is done. You're not my dad any more. But, then, a moment catches me as I see your photo and desperately try to remember the man that you were.


I'm scared that the memory I have of you will be of the man, weak and without words lying helpless in a hospital bed. I don't want this to be my memory. I look at the photo of you, healthy, smiling, happy amongst friends and family and I struggle to connect with this image, feel it. It is this memory I want and struggle to find.

Like most children, I guess, we take for granted what we have while we have it.

Tears run slowly down my cheeks as I type.

I want to remember the man who took me swimming on Saturday mornings. I want to remember the man who made me feel safe and loved when I though the world was falling down round me.

I reach for these memories and they are interrupted by today's reality. You lie there, needing comfort, a little human connection. It is a long time since I heard you say my name.

I think you know who we are, well, to the point that you know you are safe with us. Loved by us. But you are slipping away with these memories of you. I am scared of forgetting you. Scared of losing you. Scared of losing these remnants of a life.

I miss you. I don't want you to go, and I know you will soon. I wonder if then I will be able to remember your laugh, your smile, your kindness?

Dementia is cruel. It is a perpetual thief of small pieces of life. It is a temptation of hope and grief. One loss at a time.

I will cling to the little I have left of you.

Pneumonia

My father has pneumonia. My mother is fighting against all that she's being told. It's understandable. He's slipping from our grasp. He's very sick.


He lies there with his specs on his bedside cabinet. Without them, he can't see. The world becomes even more confusing than it is already in the strange surroundings of an acute medical ward. Strange noises, lights and people with no way of reaching out to ask for what he needs.

I try to find compromise between my mother and the staff in award not geared towards those with dementia.

I understand her anger, it's really simple fear. Fear of loss. Fear of losing her husband.

A difficult exchange with an unprepared junior doctor ends with a little give and take, and a promise of better care. They need to treat his illness, but they need to care for the person and it's this bit that's missing. Simple things we all need, like respect, make such a difference. A pair of pyjamas and specs on him not on a table would make him the man and not a body in a bed.

He is dying. Maybe he will recover and go back to his unit, but for how long? Even if he is able to fight the pneumonia, each week and day brings fewer words and glances, more sickness.

He grasps at the sheets and gown with anxiety and all we can do is fight for him to be seen as a person and not an inconvenience in a busy ward.

I am scared of what is to come.

Time passes

It is seven years this month since my mother was diagnosed with cancer. I remember so clearly the moment when my life turned on its head, when child became parent. Very shortly after my father's dementia was diagnosed.


Since then it has been series of hospitals, pain, fear, caring and loss. My routine is ruled by their illnesses. My mother was given two short years to live, but battled through it all and is still here. But she is damaged. She has one breast, constant pain, and scars that cannot be seen.

My father simply exists, we have no way of knowing if he is happy, sad or aware. He just is.

I \am sad for them both, but I sad for me too.

I have given up a lot to care for them, and I am tired. I also - and I hate admitting this - resent much of it. No-one is to blame. Illness is.

I have lost relationships and friendships which couldn't stand the trails that have come with it all. I have turned my life and its geography upside down. Somehow all these years have passed, and I am still sitting here alone having missed much of the years I was so looking forward to. My parents have been denied their retirement.

I wish it were otherwise. I wish I had the generosity of spirit not to be angry about what their illnesses have put me through, not to hate that I stopped being able cope with the burden for a while.

It is what it is, and all I can do is carry on.

Child as parent.

Weather. Rest.

All this weather has been strange. It's meant that my mother, who's still on crutches after cracking a bone in her back, has been mostly stuck at home. I've only been able to visit Dad once as the roads have been treacherous, even in the city. And, I've been snowed out of my rural office for much of the past two weeks.
There have been some scary drives when the village has been accessible. It is beautiful shrouded in white. Snow is frozen like wet quartz in the bitingly cold temperatures.

Working from home and a lack of driving has given me a bit of a break. Not being able to get from here to Mum to the hospital safely (mostly for my mother's sake – ice and crutches do not go!) has meant an enforced rest from reality.

I've missed Dad, but he's probably no longer able to miss us.

Seeing him over the past month has been hard. He's fallen badly twice. Partly because the staff don't realise how bad his eyesight is without his specs. He's now mostly confined to a chair. A chair with a seat belt. He is stuck there unless someone takes him for a walk. It is heart breaking. He is like small child strapped into a buggy. But he is not a child, he is the shadow of my father.

Other families tell us he seems calm when we are not there. Not resisting the chair and the straps that keep him there. It is when we visit that he fights it. Struggles wordlessly shaking the straps, the arms, pulling. Maybe he is trying to reach us. I undo these restraints and walk with him. Him unsteady, gripping my hands. Silent. A sparrow. My father.

We eat cakes and talk of anything to him. It is noise and love. Painted on calm and smiles, just trying to lift his isolation and separation from us and his world.

The image of him and the chair make me cry as I type. It is yet another small loss, another trickle of grief in the journey of dementia.

A week's break in visiting has meant a week without the constant reminder of the sadness.

Today is has reached 2 degrees, and there is constant dripping of melting ice: noise outside after the silence of the snow.

It feels strangely warm.

Comforting, mundane

There is a strange bond of understanding and friendship that grows amongst those whose paths only cross in hospital wards.


As our parents and spouses ramble, wail or shut down, lost in alternate worlds trapped by dementia, we do our best to find some kind of normal. Amidst the chaos or stubborn silence we dare not voice our losses, instead holding on to the daily pleasantries that help to make us feel better and connect beyond neurological meltdown.

Behind the painted on smiles for our loved ones and each other, there is only grief and memories they can no longer share. We all see the sadness and smile with each other nonetheless. There is no other way.

Dementia Unit - Quiet Room

Sitting in her chair trying to pull her socks off, she cries 'Mum, Mum Mum, Mum - where are you? MUM!'


She is a grandmother, who knows not her own children. She only wants the comfort of her mother. She is lost and confused and angry and scared. A child in a wizened, elderly form. It is heart breaking.

Her 'house mate' my father, however, is silent.

What consoles you?

The writer of a weekly sector specific e-bulletin I have mentioned before always starts with some personal reflection* before moving on to the business of the week. He writes thoughtfully about the world around him, ageing, politics, philosophy and so on. This week these words strike a chord with me. He was asked by a friend what consoles him and his reflections are thus;


'I consider some of the things which console me. Fish and chips – ice cream – skylarks and beaches – certainly music and books. But if David asked me that question now my answers would be – friendship. Ultimately, I believe, we’re consoled by love.'

I wonder about this for myself. I wonder this about you.

I wonder more about this for my father. We all need consolation from time to time, the reassurance and comfort that alleviates our distress, sorrow or troubles. What comfort, what consolation can I bring to a man who is shrinking before my eyes?

I have a photo of me and Dad on my graduation day, just over a decade ago. I am standing with him, his arm round me, my head on his shoulder. He is smiling and proud, despite the troubles going on at home, the real world was put to one side for a day. That photo makes make sad and happy in equal measure.

I visited him last night. In that photo he is taller than me, today he is like a sparrow. He is unsteady on his feet, and can barely speak. He is surprisingly strong for a man who is now little more than skin and bone. He grips my hand as if he will never let go, despite his eyes being somewhere in the distance, distracted by light and sound from the television in the corner of the room. Dementia robs him of focus and connection.

I tell him I love him. I don't know if he hears me, I don't know if he knows what that means or who I am. I tell him anyway. These days touch, music, food, and a little companionship are all I can bring. I know not if this consoles or comforts him. It is all I can give.

I can only hope that somewhere inside of him, he is aware of these small gifts. They are attempts at comfort that are also selfish in their giving. They console me, knowing that I am there and that I have tried. Not knowing if they are received or not, I will continue to love him and console him as best I can.

I console myself also with music, thick woollen cardigans, food and good wine, watching the weather and birds outside my window, hills and open spaces, sleeping in tents, and friendship.



*I won't name the author here as I want my blog stay anonymous – well, mostly – in a world of Google and working in a small sector I need it to be that way. If you would like to know more please use the email button below.

Mum - An unsually good day

Mum usually drives me nuts. Often my frustration with her, is not so much because of her, but because of my parents' situation and consequent dependence on me and my sister.

However, today is different. I'm very pleased with her. Not only did she get a flat tyre when away from home, but succeeded in calling the RAC and buying a new tyre without even so much as a panicked text message or demand that I drop everything and rescue her. Although, she had forgotten her phone.....however, past times would have seen her call a cab to go home and get before calling us to sort it all out. Maybe she's making inroads to being independent.

She's in an odd situation, we all are. My my father's Alzheimer's means that she is in every practical sense a widow even though her husband still lives. But he is not here. He can't give a hug or listen to her day or tell her he loves her or any of those things husbands do. Instead she has the cruel punishment of having him physically present whilst being a ghost of her husband. She still has him, in a small way, at least.

I am also relieved. Good test results mean she/we are not facing more operations or chemo and the rest, for now.

A Christmas Card

I still write a Christmas card for Dad. I know as I write it that he cannot read it. I keep writing anyway.


We'll visit tomorrow and do our best to bring him a little cheer. He won't remember, but perhaps he will be left with a sense of some happiness. It is Christmas, and it isn't the same without him. I can only hope there will be a glimpse of my Dad - the man, my father - there.

We will try to put the sadness of it all to one side and celebrate what we have.

Children aren't scared of dementia

Today my dad laughed.

He smiled.

He also cried.

It was the ward Christmas party. There were musicians with a guitar, fiddle and bodhran and singing. His kind of music.

He wore his Christmas tie and was happy to see us. He knew we were there, and – I think – who we were. Music is so emotive, and I suspect his tears were of recognition. Were they also of loss?

Seeing him cry made me cry while I sang along with the music, to him, holding his hand and tapping in time. Seeing him laugh is so precious as it happens very rarely. Today he was with us.

There was a raffle – raising money to help pay for more of these small breaks from an unending routine - and food, and laughter. Families were there trying to make the best of what they have left together and sharing in a mutual effort and understanding of the sadness latent in it all.

It was worth the tears to see Dad laugh. A charming 3 year old girl in a Santa hat sang for him, and waved and chatted, and he laughed and smiled. She didn't know what's wrong with him, and nor did she care, to her he was just a man smiling and laughing along with her and us. (My nephew is the same, insisting that my brother buy the shortbread that is his favourite, in a tin shaped like a bus - for Grandpa.) He is my dad, still, sometimes.

I love him and miss him so much. Typing this has made me cry again, but that's ok because he laughed. Let this be my memory of him. Dad laughing.

I hate Alzheimer's

I saw my parents for the first time in two weeks this evening.

I usually see them two or three times a week, taking mum to visit dad in the hospital where he now lives. I am used to his shrinking stature and abilities. Every time I go away and take a break, I come back and am shocked. I forget how much he has disappeared and how little he knows me. It kicks me in the guts, every time. I lose him all over again.

Tonight was particularly bad. Mum got very upset over a Christmas decoration, a long story....and ended up shouting at the ward manager when she was actually upset that Dad had had a good day yesterday and today he was so very absent from us again. These glimpses of the man – the husband and father – that he was once are so painful because they remind us of what we've lost and the ghost we now see.

It's tough going. I was always closer to Dad. He was getting very agitated at Mum being upset, I was trying to keep him calm and couldn't sort both of them out at once. Logically, I am terribly sad for Mum, but she has cried wolf at times, and the dramas of her own illness are so often that I now feel very little when she gets upset. It's just part of life with her. Unfair, I know.

Now I'm home and feeling guilty that I was not more focussed on her needs. I've lost him too, and sometimes it's so very hard to stay calm and strong for both of them.

She lives with chronic pain, and usually her crazy behaviour is courtesy of vast quantities of grief and morphine, the drugs do the talking. It's not her fault.

Sometimes, I just don't know what to say any more. I try to listen, try not to blame, try to not be angry with her. Often I fail.

I miss them.

Restless nights

For one reason or other I'd kind of let this slip for a while, but sharing it has reminded me why I started out in the first place, and has got me thinking again. Odd how small conversations can lead into a chain of thoughts.

How many millions like me are there out there? How many blogs and the words that they contain? I am fascinated by what people choose to share anonymously, publiclay shout about or quietly record whether read or not. One thing I do know is that writing these things, any things, helps me focus on the 'now'. I have, for a long time, been looking over my shoulder or wondering what's next. This at least means I turn to the present.

I am learning to enjoy and appreciate what I have, and reflect a little to recognise what's going on. Not always understanding why, but acknowledging nonetheless. It is a small and active thing. I am learning not too worry too much about tomorrow, but instead just slow down a little with fewer expectations and less concern about the views or actions of others. There is great joy in it.

Last night I dreamt about my father and my grandfather. Somewhere in the chaotic thoughts of a restless night my father was talking, walking, smiling, being a Dad. It has made me think of him as him, and not as he is now. I am glad that somewhere in the vestiges of my mind that these images and the sound of his voice are still with me. He is present still. For a moment or two, I do not need to grieve him and I had his company again.

Small things

Yesterday my father smiled. A rare and precious moment. Insigificant to anyone else, but a reminder that my Dad still exists somewhere, somehow within the shell of man whose Alzheimer's now controls his life. A reminder that the hospital visiting and sadness of watching his decline are worthwhile, that somehow, he is still there. He is still my Dad.

A year...

to the day that my newphew was in hospital having life saving and devastating heart surgery; a year less a day since I was visiting two parents in two different hospitals both having had accidents because of other illnesses; a year less two days since I split up with my last serious ex. All that was important to me was vulnerable, and so was I.

A year later, I'm not glad any of those things happened but they were the catalyst for me to go places I never thought I could, starting a chain of events that have left me far better. It has been a strange and incredible year. Today I must at least acknowledge those changes and achievements.