Tuesday, 25 November 2014

Honest Thoughts About My Father - His Dementia, His Care, His Being So Far Away

This is the day my dad finally leaves hospital for a new care home - the same one that was looked at in the summer before social services moved him to a completely different one without anyone's permission or consultation.  That was awful.  My cousin (why my cousin?) was phoned and asked if he could collect my dad the next day and take him to a different home.  None of that had even been mentioned to my mother and moving my dad wasn't discussed with anyone.  It was a done deal before any family member knew anything about it.  My mother hated the fact that she wasn't consulted, that she had no say whatsoever in the care of her own husband.  That was pretty heart breaking for her.  Yes.  Social services broke the heart of a woman who was dying of cancer.  It's as simple as that.

My dad has been in hospital for very nearly 3 months having broken one hip in the care home and then broken the other in the hospital.  For legal reasons I cannot write about the circumstances of the falls that led to either broken hip.  The new home looks pretty good - certainly better than the old one.  I can safely say that much, based on Care Quality Commission reports.  The report on the old one talked a lot about under staffing, people left very unsupervised.  Including the inspectors finding one person left alone, naked, hanging over a bath.  To think of people paying £800 a week for that to happen is shocking.  The report on the new home has lots of nice green ticks and none of the red crosses in the report on the other home.  Reading the report on the old home was so worrying.  I never passed the report to my mother.  That would have broken her heart even more to think of my dad being there.

It's a relief that he'll not be in a hospital room all day every day but be somewhere where specialist care - nursing and activities and so on - are offered.  And it's a great relief that the CQC reports I've read are not scary but say that residents are well looked after.  It's still annoying though.  My brother visited the new home back in the summer and it was thought that when my dad was moved from the first home he was in it would be to that one.  We thought it was basically arranged.  Four months on he's going there, recovering from two broken hips he doesn't know were broken and with various extra health issues picked up along the way.

It would be so good to be there in Sussex and be of some use.  It would have been so good to be able to have been there for him through the months.  So frustrating to be so far away and to be basically useless in any of this.  Family there have had to pull all the strings and be the visitors and they've been marvellous in finding the care home, liaising with social services and in sorting the finances.  They deserve so much credit and thanks for all they've done.  Shame I couldn't be there but for a number of reasons (which haven't been mentioned online or have just been hinted at) it's not been a possibility.  Hard not to feel deep guilt even though life had to be as it has been.  If only I could be in two places at once - supporting him there and supporting those non-online things here.   And we can all say 'if only', so many times.

I have considered the possibility of moving him to a care home up here - definitely not the local one though.  But up here there's only me and down there is a wide family and in theory friends too - though the latter are invisible.  Had that support network not been there I'd have definitely sorted that somehow.  Though I don't know quite how you move someone from a hospital in Surrey, under the care of Sussex social services, to a care home or hospital in Tyne and Wear.  In the end it may be better if he moves here if there's a decent enough home that can be got to regularly.  That might end up being better for him - certainly better for me because I could be of some use and keep up the visits - but that's not a decision for now.  Have to see how things pan out into next year.

I may have to cancel the essentials at some point soon and go down and quickly clear and sell a house - depending on what the rules are about paying for the care that will either be urgent or not.  I look at those essentials and wonder how or when.  It depends whether care is dependent on the money being in the bank of if there will be an account to be paid once the house is sold.  I should know about that soon.

And then thinking about those essentials, all that needs doing, and grieving for many things, my brain fries - it's very fragile at the moment.  I've put a little of that online but only a little - I'd prefer to focus on the good things most of the time if I can rather than focusing on just how close I came a few days ago to using a knife in a less than productive manner. Years after self-harm the memories and mental scars remain and the knowledge that in the very short term it helped get me through a hundred inner crises.

Nobody knows, or can know, the prognosis for my dad.  Two years ago nobody could have known any of this, or known that my mum wouldn't be there.  Less than 13 months ago they were here.  He was ill of course but we were still able to do so much.  This illness rather ignores the words of Terry Pratchett that a person with dementia can still write several novels.  His deterioration has been rapid.  That may continue or he may plateau.  Impossible to say.  I just hope that in the time and health that remains he will be reasonably content in the new home, will be well looked after and that if he eventually ends up here the local care home would be just as good.

Of course most of us are at the stage where we have to be honest and say that, for his own sake, we'd prefer him not to stay alive for too long.  It goes against my old Catholic instinct of saying that life is God's gift to be cherished in whatever form it takes.  But it's how most people come to feel about any close friend or relation with dementia.  For him to die while he still has something, while he can still find an enjoyment is a far better image than thinking of him utterly helpless, unresponsive, unfunctioning in the corner of a room for year after year.  It is an awful feeling to almost wish your own father would die.  But it's a common one when we witness so much suffering, so much emptying out of the person who used to be there, so much damage to the brain.  It's hard not to feel deep guilt about it all even when you know that it's entirely a matter of mercy not malice.  It's clear to me that life should not be prolonged at any cost, that life is not just the beating of a heart.  And even in the hospital, at a time when he was pretty sick, there was a DNR order for him.  That was decided upon by the family there but I was in full agreement.  If he goes, let him.  Don't save him for a continuation of the decline.

It would be so good to get there this year to see my dad (and to sort that house some more).  But looking at things as they stand I'm guessing that probably won't happen - I guess at February.  And possibly by then he won't know who I am - he just managed it during the summer but of course could only know me as he not she.  Which was fine.  He's the only person on the planet I'm happy to have refer to me as he.  Because it's not his fault.  I wish he could have got to know me as she before getting ill, but this is life and we so often can't have what we wish for.  We'd all wish for many different things if it would ease the suffering of ourselves, our loved ones and seven billion strangers.

I just hope that in the new care home, with proper care, he will be reasonably content and find things to be able to smile at, while smiling is a possible.  I hope he settles there and is encouraged to be as active as possible.  I hope that, whatever the illness continues to do to him, he is more or less at peace whether living in a real world or a world that is only real to him.  I hope so.  And I will see him again, when that can happen.

Monday, 24 November 2014

Renewing My Baptismal Vows - As Clare, With Brand New Faith

Something good happened at church last night.  Next Sunday I will officially become a member of Northern Lights Metropolitan Community Church.  Before doing that I felt it necessary to publicly renew my faith in some manner, a break with so much of the past and a cleansing - even if just symbolic - in readiness for the new and for whatever my future brings.

I discussed this with our pastor who suggested renewing my baptismal vows, and she designed a short liturgy for this.  There were the traditional vows you take at baptism, more vows relating to the faith and practice of the local church, and between the two a symbolic hand washing to wipe away the past in a sacramental fashion and through the prayer prayed as my hands were dried.

As part of this I was asked to write something brief about the reasons for the renewal.  I don't do brief!  An edited version was in the church newsletter and I read the full version at church last night.  What was read is roughly what follows - though just as when I used to preach I don't stick to the script no matter how hard I try!  I was very well behaved last night, so the changes were minor.

Mentally I've been having a rough time recently.  Some quite major struggles.  My wife says that whenever I'm doing good things I get clobbered.  And there have been so many things recently, so much of a move to becoming a better functioning human, in the places where I am meant to be.  Saturday night was the worst I've had in years - but it led into a Sunday that was excellent.  I realised yesterday morning that among other things I was grieving, mourning greatly - for my mother, for my father, and also for the years that I could not live as who I am.  All those mourning processes are needed but piling it all up together isn't easy.  On Sunday as I was on the way to another church in the morning I opened my Bible to the next chapter.  Happened to be Matthew 5, the start of the Sermon on the Mount.  So I read, "Blessed are they who mourn, for they shall be comforted."  And then the first song at that church had lines, also drawn from the Bible, about mourning being replaced by joy.  Sometimes God knows what God is doing!

Truly, this weekend contained very low points, mourning, sorrow.  And it contained high points of commitment, friendship, and joy.  Life can be so amazing in its variety.


Last night, during the service at Northern Lights MCC I publicly renewed my baptismal vows. For me this is a needful step before formally becoming a member of the church. I know that's not the case for most people so wanted to publicly explain why I am renewing those vows.

Firstly it's because I was baptised under another name, another gender, and was a very different person then. I'd love to be re-baptised as Clare but of course that's not a theological option. Baptism is a one time event – and I've already gone through it three times as an adult. I cannot be baptised again but I need to publicly express that, as Clare, those vows I made as “him” still stand and that they stand more firmly than they ever did in the past.

That's the obvious reason: My present,living as the woman I am, is such a changed life from my past, forcing myself to live as the man I never was.

But there is a second reason. It's even more important to me than the first. Many people in the church will know some of my story of faith over the last eighteen months. As I sat at MCC my Christian faith died a slow death, a painful death. Every service was a kind of torture for me. And some in the church put up with my many words, my complaints, my deep pain through that process. I cannot thank the church enough for supporting me through the death of my faith and through everything I said, and felt, and did.

My faith deserved to die. It really did. Good riddance to it! Not because of any doctrines or dogmas that were or weren't attached to it. But because the root of my faith was self-hatred, self-denial, self-rejection – arising from a firm belief that I was no good. Much of that came from received beliefs about my gender and consequently my near-constant urges to self-destruct. My faith helped to destroy me, helped me to eradicate myself, for twenty-three years. It was immensely important to me but it crushed me.

Eventually I was able to leave that faith behind, and rest secure in a faith that excluded any personal God. The plan was to leave MCC and never look back. That was the only future I could see. But throughout the whole journey I still believed in MCC, her vision, her people, and the place of healing that the church is. And, solely because of certain of the people, I stayed.

Many of you will have noticed a not so subtle change in me since the start of October. At church one evening everything suddenly clicked. I could sing the songs, pray the prayers and knew it was OK to receive communion again for the first time in a long while. And I was extremely surprised that night to find myself on my knees, hands in the air, lost in worship and thankfulness to the God I didn't believe in. The “God of Surprises” entered again and renewed my world, my heart.

Faith returned. It's a new faith. Brand new. It's a far healthier faith, one that accepts the love of God, and one that can honestly say with the Psalmist;
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.

As I renew my baptismal vows it is my freedom to be Clare, to be authentic, that I celebrate. But more than that I celebrate my return to faith. A purer faith. A very different faith than that I had before. Based on self-love rather than self-condemnation, on authenticity rather than self-squashing, on freedom, on love, on grace, on hope, on acceptance, on inclusivity, on joy, on light and life and on so much more.

As I publicly vow myself to God and to the centrality of Jesus in my life, I do so based on the solid conviction that God is love, and his love is for me and for all of us. And I do so based on a response of love that seeks the beauty and life of Abba, Jesus, and Spirit.  At this point I do not know exactly what I believe down to the x, y and z of doctrine.  But I know in whom I have believed.  In God, who is my parent and source.  In Jesus, saviour, who is my example and who died.  In Christ who lives, and lives in me and in all of you.

Sunday, 9 November 2014

A Day to Remember

Let us remember:

The British troops who died in war.  According to some things I've read that's all this day, Remembrance Sunday, is about.  Yes.  Remember them.  So many brave men and women standing for causes they believed in.  So many other brave men and women forced to stand for causes someone else believed in.

But let us remember not only them.  Not only our British troops.

Let us remember those of all nations who fought and died with the British in war.  Those of all continents and many countries.  The Sikhs, Hindus and Muslims and people of other faiths who fought with the British and are so often forgotten, sidelined in the commonly told histories.

But let us remember not only them.

Let us remember those of all nations who fought and died on any side in war.  Those we called enemies.  Those who called us enemies.  For the nominal enemies weren't any more bad or good than the troops who fought on "our" side.  And those who fought in wars our nation had no connection with.

But let us remember not only them.

Those of all nations - whether armed or civilians - who died in any war.  Those who chose to fight.  Those who were forced to fight.  Those who chose not to fight.  Those who served their societies and died without entering the fight.  Those who we pass off as "collateral damage".

But not only them.

Let us remember ALL who suffer and have suffered because of the hell that is war.  In so many wars that is almost the entire population.  And even for us - most of whom do not experience war on a daily or yearly basis - we will know people who have been affected and have suffered as a result of war.

Let us remember all those who refused to fight.  The conscientious objectors, the pacifists, the humanists and religious people who stood against the killing.  Let us remember their bravery and their own sacrifices..

Let us remember the innocents caught up in the hell.  Those who will die, be wounded, lose family members, be forced from their homes, go without food, because of the wars taking place right at this moment.  Those who have been exiled because of war.  Those who have to flee their countries only to be demonised by the British media if they have to flee to here.

In 1919 we said "Never again".  When will we mean it?

If we just remember the dead soldiers but don't live and work for the peace they sought then their deaths will ultimately be without meaning.

Yes, today is a day to remember, to mourn the wars of the past, to celebrate the good men and women who lived, suffered or died in those wars.  Most of us know stories - or know people - who have fought and sometimes in their service done much good.  There is a song by Robb Johnson that I cannot find online.  It begins as an anti-war song addressed to the artist's father.  How could daddy have held a gun and fired it at his fellow human being?  So the question is asked repeatedly and angrily:  "What did you do in the war, daddy?"  The answer came back eventually:  "I liberated Belsen.  Me and my mates, we liberated Belsen."  Let us remember the past and the people who lived through it.

Let us remember the stories.  The triumphs.  The despair.  I will think today of the German prisoner of war who drew a picture of my mother and her parents one Christmas.  I wonder what happened to him after he returned to Germany.  I wonder if he had children and grandchildren who would be amazed to know that he is remembered here through his pictures.

But this is also a day to look forward.  A day to live in hope.  A day to proclaim "Let there be peace.  Let us learn to love one another.  Let us learn to embrace the differences we allow to divide us."  For me this is never a day to give any glory to the concept of war or to a past and present in which nations have felt such a need to go to war so often.  This is a day when I look for a time that the red poppy - the blood, the long reality of warfare - is a memory and the white poppy - the call for peace, for the unity of humanity - is a present reality.

To close with famous words of John Lennon;

"You may say I'm a dreamer
But I'm not the only one
I hope someday you will join us
And the world will be as one"