Hospitals and flashbacks

This evening I left mum in the hospital where my father died. She's having her first hip replacement in the morning. She's scared about the anaesthetic.

It seems so routine after all we've been through these last years, but it's left me wobbly.

It was strange being back there, and hard to realise quite how tense and stressful and sad these years have been. After leaving mum tonight I wonder how did I ever get used to leaving my father there?

She's on her own, scared and worried and strange surroundings. Logically, I know she'll be fine. But, but...there's always that nagging doubt.

I didn't know how worried I was, am, and I'm left surprised. I thought I'd become numb to hospitals and sickness, perhaps I had. Having a few months' break has undone that resolve.

Questions rattle round my head. What if something happens? What if these were my last words to her? What if it's not ok? I should have said...

I just need to ride it out and know that I'll relax tomorrow once I've made the lunchtime call to check all is well.

I love her and want her to be ok.

Reluctant Freedom

I moved back to my home city four and half years ago to help care for and support my parents. This wasn't the selfless act it perhaps seems, I was simply exhausted and time poor from travelling back and forwards between two cities too often. My organisation had an office here, and a transfer was possible without impacting my job.

Since I came home, my entire routine has been defined by hospital visiting or caring. With one parent still needing support, those circumstances are still partly true. But, with one now gone, the load has lifted significantly.

Suddenly, I have time. I am not bound by visiting hours. My mother is well and able enough for my sister and I both to be away at the same time without having to coordinate our every move.

I miss Dad, but I'm also finding a freedom. Freedom to chose how I spend my time. I'm also finding that I'm not very good at just stopping. Until a month ago, a duty-less evening or a day of nothing was a rare treat. And one spent just catching up with the basics and resting. Now, I have time.

I have to redefine my existence here. I have to find a routine and life of my own. I'm taking small steps towards just 'hanging out' and have aimless days or evenings. These things still are tinged by a nagging sense that I should be doing something, be somewhere else. There is a lingering guilt. A sadness that I'm enjoying some space only because my Dad has gone.

I'm still grieving, but beginning to allow myself to be a little excited about anticipating a future that belongs to me.

The biggest thing I need to do is learn to relax, and learn that I no longer need to plan every movement.

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PS there are words emerging in my head about the impact these last years have had on my relationships and friendships. I'm writing this to remind myself that it's a post I need to write.

Where to begin again?

The past week has been really odd, and today is even stranger. After a week of crying and organising, today is an ordinary everyday sort of a day and don't know quite what to do with myself. After keeping going through the horrible last few weeks, it's over. There are some details and practical things, like collecting ashes and dealing with lawyers, still to be done but there's a big gap.


It's a Dad sized gap which means we are at the end of nearly four years of a 6pm hospital visiting routine. I'm feeling oddly guilty just sitting here and doing nothing.

The thing I've found strangest about Dad dying is realising how kind and generous our friends are, and making myself accept that kindness. There are people who've stepped up and been here who I am humbled by. A friend drove more than 200 miles yesterday to come to the funeral of a man she'd never met. She was there for me. It's one of the nicest things anyone has ever done for me and I am so very grateful.

I also realise that over the past few years I've probably been a pretty hopeless friend. I've been caught up in the demands of my family with little energy left. That will now change.

So, here I sit questioning if I can face the house warming party of a friend and thinking I must, as he found the time to be at my father's funeral.

I know much of my grieving has been done over these weeks, months and years of gradual losses. I learned how to miss my father a long time ago. However, the adrenaline crash has come and I am flat and tearful. Exhausted by a seven year long journey that has been so very difficult and I am left wondering what I will replace it with.

He's gone

And I am sad. It's the end of a very long road.

We carry on

I am waiting for the phone to ring and for my sister to tell me he is gone.


I hate leaving him. I hate leaving him, so dosey on morphine now delivered intravenously because he struggling to swallow the pills. I hate leaving him alone with his music and the kind nursing staff.

Mum doesn't seem to want to stay beyond him falling asleep. She is trying to keep hold of the remnants of 'normal'.

Weeks have become days, and days will become hours.

I feel guilty for not being at his side, but must follow Mum's lead. She is is the person who we now need to travel along with. We'll do whatever is right for her as she loses the love of her life.

We have said our 'I love you's and goodbyes.

I hope he knows we are with in thought even when were are not present. I don't know what he knows of it all.

It is so very lonely for all of us. We can't reach the person we are so desparate not to lose.

I know that in years to come I will read these pages and weep. Today, I just want someone to hold me. Does he too?

I feel guilty leaving him there, but the time for vigil will come. Until then there is work to be done, and dishes to be washed, and tears to be shed so that when we are there gentleness and smiles are what he hears.

It's time to say goodbye

My father is dying. I have said goodbye to him so often, fearing that he would no longer be there when I came back. This time though, I know it's real. I've returned early from a holiday to be with him and my family.


I'm beginning to regret leaving the hospital this afternoon. Mum, and my brother and sister are due to return in hour or two and I think I should go as he may not be here tomorrow.

His breathing is laboured. His chest rattles as struggles for breath and to cough. He is grey.

Nothing will ever prepare you for the sadness of helping to feed the man who once fed you, or hearing him desperately trying to cough and failing. Knowing that nothing you do will make it better, only less difficult.

He is in his last days, if not his last hours.

The man I love most in the world is leaving me.

The last seven years have been so very hard. He's gone from knowing something was wrong as his memory began to fail him to being bed bound and shrunken, unable to do anything other hold our hands. Dementia is cruel. A silent thief.

Nothing will now stop this relentless decline. Each week has brought a new loss. We have fought hard for him, to get and give him the care he has needed with respect and kindness, and he has fought to stay present.

It is time for him to go. It is time for us to help him do that with peace and love. I just don't want him to be alone or scared.

Perhaps this evening will be the last time we are all together as a family, and I will say good bye one last time.

An email from my sister

Meeting was OK. Dad's psychiatrist and Margaret the nurse. They think dad is coming towards the end (we were offered a leaflet called 'coping with death') and really just wanted to know what we wanted in terms of how aggressively to treat some of his symptoms - like the eating and chest infections.


We said that we wanted him kept in the unit and kept as comfortable as possible, as he seemed to have a really bad time of it in the general hospital. They explained that they were feeding him as much as possible, but their guidelines say they have to stop as soon as they think he might be aspirating the food, or dozing off, so he is eating less than he used to, hence why he is losing weight.

They understand and agree with us, and will try to keep him as comfortable as possible.

Mum took it all fine, but I'm not sure if she really took in that we might be nearing the end. She was telling them all about how her hip ops might interrupt her visiting for a while, and I got the impression that the unit think another bad chest infection might be his last. They will give him whatever drugs he needs to keep him calm and well.

Not brilliant news, but not unexpected. We can feed him what and as much as he wants. They really just wanted to meet us to discuss whether or not he goes back to the general hospital if he gets unwell again. We said no, because it didn't seem to do him any good the last time.

Glad I managed to make it along.

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.

Do not resuscitate?

A long time ago we agreed, as a family, if anything serious happened to my father he should not be resuscitated. A difficult decision to make, and one guided by what we could gather from his wishes while he could still speak.


Today the reality of that decision came into focus. The nursing staff couldn't wake him this morning. By noon his doctor had discussed with my mother resuscitation or letting him go. We were told to go to the hospital. The A&E doctor reiterated the question.

He's been drifting in and out of consciousness ever since. Because he can't communicate or understand all that's said, it makes any diagnosis hard to determine. They think he's had a stroke. Only time and tests will tell.

Mum has changed her mind. When faced with the reality of losing him, she can't let him go. She wants to give him every chance. She wants to be able to visit him in the dementia unit for as long as possible. She's scared of never seeing him again.

I don't know how to feel. A conversation with one of his regular nurses has left me thinking that this is the beginning of the end.

The thought of letting him die if more could be done is horrible. The thought of keeping him alive with no quality of life, confined to a bed in a dementia ward, is horrible too. Whatever happens, my mother's decision will be respected. She is the one losing her husband. She is the one that needs to do this her way. I'm ok with that. I understand why she's done a U turn.

I don't want to see his quality of life, his ability to engage with people and the world ,diminish so far that he is just a body whose spirit has long gone.

I am in tears as I write this. It is Christmas and we're trying to make the most of what we have, but every day is coloured by his illness. He is trapped in a mind and body that betray him. There are sparks of him still there. Moments where he is, so very fleetingly, my Dad.

I am so very, very sad. He is the person I ran to, rescued me, I trusted, picked me up, made me feel safe and he is slipping from my grasp like water. Each week sees another small step towards darkness and grief. Another seizure, another fall, another word lost from his voice.

I will miss him. The next days, weeks and perhaps months will be hard. I'm not ready to lose him, but I know the journey we have taken over the last five or so years, is nearing its end. 

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.

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.

Re reading the past

Thinking about the past is an odd thing. I’ve spent the afternoon clearing out a suitcase full of stuff that I moved here with two years ago and have never opened. Lots of letters. I re read many of them. Some lovely, some fun, some frustrating and some upsetting.

I read all the letters my grandpa sent me whilst I was a boarding school for sixth form. I don’t think I’ve read then since. It was lovely to think of him and his struggles with typewriter ribbons and the like! He the wrote the last one days before he died. He was a wonderful man and I still miss him. It has made me wonder if he’d be proud of the person I have become. I hope so. He would be hugely proud of my professional life, and he’d probably adore that I continue to play his fiddle, even though I have a better one, it is his and I love it. Music was his gift to me. He would be disappointed in some of my bad behaviour. He would be sad hat I don’t have a family of my own, but he would be sad for me, rather than being sad that I hadn’t produced great grand kids if that makes sense. He would be sad that my faith has disappeared. He was so pleased when I was confirmed, and wrote to me of the importance of it. He would be glad that I am home and helping my parents while they need it. He was a great friend and a bit of a confidant, something I have lacked with my parents. He would tell me I am like my mother.