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.

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