He's gone

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

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.

A hastened decline?

My father hasn't eaten since Tuesday night. He was nil by mouth and until he was settled, but now he's struggling to swallow. Because of the holidays he hasn't been seen by the necessary specialist staff.


It seems he's had a massive seizure instead of a stroke, which is in many ways, great news. Easier to recover from and to treat. However, i'm terrified that he will end up another case of someone who declines rapidly because of hospital stays and not because of the reason he ended up there. The general wards have no idea how to care for someone like him. They didn't realise he could eat on his own, or walk or was alert.

Two good nurses spent a long time with me today talking it all through, but they're worried. Worried he's not managing to swallow water. At worst he could end up being tube fed. If that happens he will never make back to the unit where he's comfortable and well looked after.

I am so scared that he won't get back to his 'normal'.

It breaks my heart to see him in a place where they're trying their best but don't have the skills or the knowledge to do what he needs. He can't fight for himself. We must do that for him.

Days like today are lonely. I've done my running around after my family, got through what needed to be said and done and now I'm just sitting here typing, crying.

There's an invite to the pub, but can I face a group of near strangers with only a couple of familiar faces? I know I don't want to be here on my own wallowing. I just want some comfort, somewhere for my words and tears to go. Someone to listen, to be looked after. Instead, I just have to carry on, pull myself together and try and brave the world.
 
I want for Dad to be treated with respect and care, and not to be a victim of a system not geared t deal with dementia that is stealing him little by little.

Christmas Present, Christmas Normal

Christmas is done for another year, the day disrupted and organised round hospital visiting times. It's been a day of distracting my mother and being entertained by my four year old nephew. I don't know what normal is now now, but everyone is fed and watered. No one argued.

My mother forgot her evening pills but struggled through with an emergency supply of morphine and painted on a brave face. I appreciate her effort, and the normality of it.

I've worked hard to make my house feel like home for us all, and over shopped, and over catered. I guess it's about wrapping those I love and worry about in as much comfort as I can as a brief respite from reality, pain and fear.

It's been lovely. Charades and board games largely directed by one wee boy amongst adults. His joy is ours.

Next year it will be back to three of us; mother and daughters, my brother with his wife and child will be with their other family.

I want to hold on to to the memories of this one. Normal. Family. Fun. Thoughtful.

Leftovers to be turned into something interesting, if not fabulous, for the next few days. Life just being life, and Christmas just being Christmas.

I'm no longer a believer in God, and I'm not hugely concerned about maintaining the origins of Christmas, but I am concerned by its spirit. Family, friendship and hope for an uncertain future.

Tomorrow I will tidy.

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. 

The biological imperative

I spend a lot of time with pregnant women and mums with small kids. They are my friends and I am happy for them. I love meeting their small people.


A conversation with a newly pregnant friend last weekend has rather unexpectedly thrown me into a tail spin. The usual chat about how she was feeling and the like, turned into a reflection on her motivations. She is the person who told her husband a few years ago that she didn't want kids. A conversation with her GP about her age (35) and her fertility got her thinking, and she changed her mind reckoning that it was better to to go for it, have a child and unexpected adventure than always wonder 'what if....'

Being a women can be strange. Our hormones help us measure the months and years that pass. They play with our emotions. Tears can come over nothing, and it's only a day or two later it dawns on you that it was simply hormones that made you weep or shout. It can be simultaneously reassuring to know why you were upset and unsettling that invisible inner forces can have such a strong influence.

The tail spin has come because I suddenly realise how old I am. Of course I know. Of course I understand that my fertility is dwindling. But somehow, this one conversation brought it all into stark reality.

I sometimes think I want a family and sometimes think it's ok I don't really. I suspect I talk myself out of the idea because current circumstances suggest that it is unlikely to happen.

My body is screaming at me. Screaming at me to procreate before it is too late. Those pesky hormones and the biological imperative are begging me to pay attention. No matter what I want or don't, right now what I don't have is choice. Without a father, there will be no children.

My body screams at me every day and there is nothing I can do to silence it. I can only listen and wait.

Hospital

Mum very reluctantly apologised, and only after blaming me, buts and more buts. Excuses. I demanded an apology, no matter how many times she tried to change the conversation. I couldn't let it go. She has to take some responsibility for her behaviour, whatever the cause.


She has a minor crack in her spine after her fall. I am feeling very guilty and ashamed. She is the boy that cried wolf, and I stopped listening a long time ago.

I visited her in hospital this evening. She wants comfort and affection and I freeze. I am angry that my life has been taken over by my parents health. I resent it. Resent her. I cannot give her what she wants. I can do the practical stuff, but I struggle to feel anything other than angry towards her.

Like a child she cries or has a tantrum, and expects us to drop everything. When does she ever do this for me? I've stopped telling her when I'm upset about anything. She knows this. I refuse, cannot bring myself to do so. She'll only bring the conversation back to her. So, I've given up.

I wish it wasn't like this, but it is. I wish I didn't have two hospitals to visit.

Guilty

So now begins the cycle of guilt.


I feel guilty for leaving her.

I feel guilty that my sister got dragged in.

I feel guilty for being so angry with her.

I feel guilty for writing my last post. Surely I am a bad person for thinking and wirting such things about my mother....

So on, and so forth.

I want to make it better but I also want her to take responsibility for her part. Will I stand my ground? Or will my guilt eat away at my conscience until I succumb to it?

She is now in hospital.

I will visit my father in his hospital this but will I visit her? If I do not, I know that this will drag out further. If I do, I hand all the power back to her.

She will tell me she doesn't want to talk about it. She will tell me it was the drugs talking and it is not her fault.

She no longer behaves like a mother but like a petulant child. If I capitulate, which I inevitably will, she will do it all again at some point in the future. I am exhausted with it all.

Bitch

Well, it's official, my mother is a bitch.


Having turned up with food and things for her, despite her shouting at me down the phone, being over dramatic and catastrophising she announced that I'm the last person in the world she'd ask for help and that I wasn't a good enough daughter. She tells me I am a good daughter to my dad but not to her. My poor dad who doesn't know it is father's day and can't remember my name. My dad that I miss desperately and see fading before my eyes, disappearing week by week.

I asked for an apology more than once to be told hell would freeze over before I got one. I gave her one more opportunity, and then walked out.

I too am a bitch. I have left a highly distressed seventy year old woman with severe back pain on her own to do whatever the hell she pleases.

She has made me feel like an inadequate and unworthy for most of my life. Tonight she crossed the line. After six and half years of caring for her, I'm going to stand my ground.

I don't know if it was the alcohol or the morphine or the pain talking, but talk she did.

I am feeling guilty for leaving her. She will blame me. I will blame me. I am a bad daughter. Nothing I do will ever be good enough, no matter how hard I try.

Guilt will eat me up.

He is Alive

Today is a day I don't want to go through again for a long, long time.

My beautiful, wonderful four year old nephew has spent eight hours having surgery on his heart. He now has a goretex artery. He really only has one functioning chamber, and had his first op two years ago to help re- plumb him and keep him going until he was big enough for today to happen. His situation is extremely rare.

Over the past months he has been getting more tired, breathless and blue on a bad day. Oxygenated blood gets round his body more by luck than by design, hopefully today will change all of that.

It's so easy to forget he's not a normal wee boy. He is a cheeky monkey, who is learning his way in the world, obsessing about Ben Ten watches, demanding just one more story and refusing to eat certain things although he loves broccoli and asparagus! His 'go faster stripe' or 'zip' is, of course, a constant reminder.

He is the most important person in my world. I don't have kids, but I do have him. He lives round the corner and we see each other often. We have things that just he and I do together. We're growing a miniature garden at the moment. It would have been all tomatoes if he'd had his way. Instead there are beans, broccoli,carrots, potatoes, pumpkin and some ill looking radishes. And, tomatoes. We laugh and he hates snails. He gave me into trouble for throwing one into the next garden the other day. He reminded me that I should be 'nice and kind'. Sorry snail.

He is still intensive care, and being sedated over night. He has been in my thoughts, hopes and tears today. The dreadful thought of it all going wrong and the pain that he will be in when he wakes nagging me. The endless hours, minutes and seconds endured by my brother and his wife. The thoughts of eating his first home grown radishes and learning to like bugs keeping me going.

He is OK. He is not there yet, but he is strong. He will get through and we will all be right there beside him.

He is alive.

Exhausted. Head and heart.

I'm shattered after the fortnight from hell.

Huge work deadlines, continuing saga of the sister's grumpy boyfriend impacting the rest of the family now and has us arguing rather than supporting each other. The exhausted me hasn't helped the situation at all and compounds all my fears and insecurities.

Big day today in getting work moved forward, presentations etc. I feel like I've been on some crazy job interview. The rational me knows I'm good at what I do. The tired emotional me feels like a fraud and is terrified of everything falling to pieces. Doubting myself and my abilities.

Even the fun stuff feels like hard work and I'm longing for the security of having an employer whilst knowing the freedom of the freelance life makes me happier.

I can't think straight or take an objective view. It all feels like it's my fault (whatever 'it' is), that I'm not good enough. The devil on my shoulder is shouting way louder than the angel can compete with.

I know it will pass. I know it will be OK. But tonight? I'm not OK. Maybe I just need to write it out of my system.

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.

Comfort and microwaves

The cold weather and snow of the past few weeks has had me thinking about food.


I love it. From salty olives and strong blue cheese to a simple slice of toast, it plays a huge role in my life. It's not simply a functional thing for me. Cooking centres me, the process of making and doing and laying a table gives me great contentment.

I love to have friends here to eat. A simple supper on New Year's Day of baked ham and mashed potatoes was wonderful, shared with friends laughing and reminiscing. The two or three hours of tidying and pottering, listening to BBC Radio 4, just stumbled by without me noticing. I like feeding other people. I like making them happy and bringing them together. Sharing.

One of the best gifts someone can share with me is to set the table, light a candle, and let me drink a glass of wine while they cook. It is a thoughtful act of caring. It is so elementary and still feels so special. When someone cooks for me I feel privileged and loved. I appreciate this gift not just for the food, but for the chatter and moments of quiet creativity (or burnt hilarity) of a Sunday evening when the real world is being held at bay.

Whether I'm cooking for myself, for a crowd, a lover or dining out in celebration with family it will always be a vehicle for conversation, satisfaction, pleasure and comfort.

I wish we could ban the microwave meal.

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 - To be or not to be?

I've talked occasionally about whether I want kids or not. My last post, on a cheerier note, mentioned it too. Writing it and time with my nephew has made me think a little about whether I'm be completely honest on this subject – with you and with myself.


I've been vague with 'if it happens, it happens. If not, that's ok' type comments.

I'm not sure that's true. It's what I tell myself.

In about a month and a half, i'll be 35. I'd always imagined I'd have settled down, married, be having a family now. It hasn't happened.

I don't let myself dream about being a wife and a mother because it seems so far away from reality right now. It's something that, courtesy of time and biology, seems to be slipping from my grasp. It means I have no choice but to consider what an alternative life might look like, and live the one I have as best I can.

The truth is, even if it scares me, I would love all of it.

Festive feet!

I some times wonder if I want children, but nights like last night make me think it wouldn't be such a bad idea after all.

Long story, but I received a marvellous festive pedicure from my 3 1/2 year old nephew. We had wonderful fun and just glancing at my feet today makes me giggle. Here's why.....

Bugger.

My mother thinks her cancer might be back. I know she's serious because it's taken her over month to tell me, and she hasn't told anyone else. Smaller problems are shouted to anyone within ear shot.

It's six years since that first phone call to me which she didn't tell anyone else about either. She was diagnosed within the week. It's been a bloody hard slog for all of us. We always knew that it would reappear, and I guess I must face this very real possibility head on. Bugger.

I'll worry when we have facts, and in the meantime there's nothing to do. Well, I say that. I will worry, in a background noise sort of a way, but will try not actively think about it. At least today she has called her nurse.

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.