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. 

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.