Death Before Dying

I’m sorry.  I never intended to post to a schedule but I had hoped to post a little more frequently.  The truth is I have found this one, for which the blog was largely created, incredibly hard.  I knew it would be of course but I didn’t expect that I would have to bribe myself (with maltesers) to get the sentences written in my head pinned down to a screen.  It just makes the truth a little more real.

This won’t be overly pleasant to read.  It it is less pleasant to write.  But it is worse, far worse, to live.

I have lost my grandad.  What I have now is a confused, snotty shell of a man.  Leaking from every orifice, knowing no-one but wanting to cuddle us all.  He is not yet at the stage where he has withdrawn completely within himself, instead he wants so desperately to be with others constantly.  He needs the reassurance of others but he is a contradiction, he will accept anyone but is scared of all but a select few.  He fights everything, on occasion physical violence (although his body is so weakened for someone younger this is no threat) but mainly by having strops like a three year old.  He objects to everything – if you serve up salad he wants it on a warm plate.  He argues; about if he’s eaten, if he’s been out, about everything.  He still wants to help but doesn’t know how.  His organs are slowly failing on him.  He can be the nicest, sweetest person around or reduce you to tears by his cruelty.  He has forgotten everything but the buttons to press.

The cause is pretty obvious.  In his case it is a mixture of Alzheimers and Vascular Dementia.  There are various versions but the chances are one of them will come to you and your loved ones.  As we live longer we have more and more of these problems and right now we don’t know how to solve them.  Here’s a few stats for you (source: Alzheimers’s Society). There are currently 800 000 people living with dementia, 17000 of whom are younger (under 65) people.  The proportion of people with dementia doubles for every five year age group. There will be over a million people living with dementia in the UK by 2021.   In the UK there are 670 000 carers for dementia sufferers, saving the UK economy 8 BILLION pounds a year.

Only 44% of people living in England, Wales and Northern Ireland who have dementia receive a diagnosis meaning these stats are based on guesswork.  The reality could be much, much higher.

I, and others who know her, believe that my gran is also succumbing.  She’s not far enough gone for the doctors to see it but it’s there.  Her health is failing but her mind is too,  even without the strains on her body she really wouldn’t be fit to leave on her own.  Her sense of judgement has gone.  She certainly can’t look after her husband who goes a little further from our world each day.  The result is my mum has become one of those 670 000 saving the NHS £8billion; she has become a live-in carer.  She wipes his bum and clears the mess (which is considerable as he tries to clean himself with everything).  She cooks and cleans.  She keeps the diary, arranges and fits incontinence pads, liases with the various agencies.  And she sits in silence for hours on end while they sleep to too loud TVs, unable to change channel or leave as it will wake them and cause resentment.  Or listens to the same story for the fortieth or fiftieth time.  She is meant to be retired but while at her age my grandparents were going on holidays abroad her life is on hold so she can wipe up snot and shit. Myself and my family help where we can but ultimately it falls to mum as she is living there.  I do not know how to help her but I fear for her health.

I have seen several times recently articles on carers,; on each it glosses over the messy reality and says that although it is hard it is worth it.  It isn’t.  No-one is happy about the situation.  My grandad is far enough gone that he will be happy anywhere and in a care home the carers would at least be trained on how to deal.  And they would be able to go home and put it to the back of their minds, instead of being on call all day.  My gran hates what she is reduced to.  She has admitted that she wishes she was dead but she is a committed Christian who would never consider suicide and she is determined enough that she will hold her body together until grandad no longer needs her.  She resents that my mum is often better at dealing with grandad, because mum reads (and uses!) the advice and because she is strong enough and stable enough that she can do things like change his pads with ease.  And my mum, my mum is in hell.

I do not pretend to know the solution.  I do know that if grandad were to go into a care home he would have to pay some costs, over £100 a week.  I know that my gran, who can barely walk, who cannot climb stairs, who can only lift with one arm and who recently made a single meal and could barely move the next day, is eligible for all costs, which can easily be over £500 a week.  I know that on the news most days there are care home abuses reported.  And I know that 99.9% of the people involved in care and provisions for the elderly hate the system but continue in the hope that they can make a tiny difference.

We have developed to a stage where we live long enough to suffer from previously rarely seen illnesses.  Dementia and arthritis are just two examples of illnesses that were present previously but rarely had a chance to take such a cruel hold.   We have this but we don’t have the ways to properly treat them and we don’t have the systems in place to care for the sufferers.  The current system is cruel, adding financial worries to everything else at a time when people are just worn out.

Two elderly people were hit by a train near me yesterday.  It was described by police as “non-suspicious”.  There has been no inquest: I do not know what happened. My thoughts are with their families and with the train driver who will live with this forever.  But my immediate thought at seeing the news was; were they going through this hell too?

Thank you for reading this.