The Slow Attrition Of The Soul

It is 3am, it is cold and dark and damp. I am tired and fed-up and sad.My heart is being broken by a deeply demented 65 year old woman who can only whimper and cry for no obvious reason. She can hardly talk due to the dementia, crying quietly to herself is now a large part of her life.
She is clean and well looked after by her daughter who, a couple of months ago, suddenly had her mother-as-a-child, in addition to her own children, to look after.
It's jobs like that which slowly destroy your soul.
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Sent from a mobile phone, probably from the cab of an ambulance.
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25 thoughts on “The Slow Attrition Of The Soul”

  1. Your comments about everything you have ever worked for being taken to pay for your care in later life and the minimal and underpaid help that is offered to those who look after their relatives at home is a particular gripe of mine too. Watching the demise of someone with dementia (the carers' illness) is painful and the lack of support disgraceful. Thanks for the poem

  2. Dear Robin, thank you for saying all this. I am a person with disabling mental illness who cares for my husband (also with disabling MI) + physical problems. There are a few similarities with dementia, when he's very ill I can't tell who I'm talking to. My father (85) now has Alzheimers and naturally we are worried that he may have to sell the house he built, literally with his own hands, to pay for care because none of us are well enough, we'd end up in hospital very quickly. This is one of the things that I feel really strongly about, that the lack of support for carers leads to them becoming increasingly ill. We have a few people here (Lambeth) who do their utmost to help carers, the major problem is that money agreed by the council is very slow to reach them.Would it be OK if I sent you poem to the Carers' Forum Co-ordinator?

    Take care,

    Isobel

  3. Can empathise with that! I X rayed an elderly lady yesterday who had severly ulcerated legs so few people came near her, she was very confused and kept clutching a cuddly toy who was her only friend. No-one accompanied her yet she was lucid enough to know she was diabetic and wanted to eat soon. It's heart breaking to think of so many people alone and in need because society doesn't want to be bothered. All I know I could do was listen to her while she was in my care.

  4. My father had multi infarct dementia (and a selection of other debilitating ailments), he died nearly 2 years ago now.Between my sister and myself we spent nearly all of our weekends and as much time in the week that we could manage (distance problems), helping our mother look after him at home.

    Newham is quite happy to put people into residential care (after you are “means tested” – chances are that if you have worked hard all you life and saved any money – you might own your own house and have just a little savings – and they will happily take most (if not all), of that for the “costs” of the residential care.).

    Between the horror stories of the longevity of MID patients once they arrive in residential “care”, and experiencing St Andrews hospital, geriatric (and locked wards), first hand with my father (I call it the “death hospital” – in the month and a half that my father was there with a severe UTI more people left the ward under a sheet on a trolly than those that walked out or were wheeled out recovered), there was only one choice to look after my father at home.

    Newham allowed us to have two carers', two for an hour in the morning, two for half an hour at lunchtime and tea time, and two for an hour at bedtime (8pm – 9pm ish). The stairlift we had to buy because it took too long for them to organise, commode chair and bath lift they supplied, and short transit wheelchair (in other words a pig to manoeuvre (for a bloke), not comfortable, and hard tyres instead of pneumatic.

    The carers were employed on minimum wage, from the company that furnished the lowest bid (they changed company on a yearly basis almost), the carers were ok apart from trying to fiddle they system and most times the two that were supposed to be there, had, on a regular basis arranged for one to be “delayed” somewhere and somehow, and yet expected their sheet for the time to be signed as if they were there.

    On the wages I cannot blame them, but if my mother (70 years + and with a bad spine), had to help one of them lift my father (16 stone), onto a bed and from a chair to a stair lift I saw red because they for carers could not seem to care less.

    Not all of them I must qualify, some were angels (male and female), but not enough were.

    Sorry for such a long comment, I'll take the liberty of sticking a poem I wrote during his illness.

    You watch

    Your father's short term memory

    Become like a goldfish memory

    But at least goldfish remember

    You watch

    The old recollections and old events

    Become like yesterday for him

    And you are a small child

    Not this strange man that you appear to be as you talk to him

    You watch

    A strong big gentle man

    With big hands trying to strangle and strike

    With a malice and intent alien to him and you

    You watch

    Your father calling you a liar

    When you only speak the truth

    Which he cannot remember teaching you to do

    You watch

    Your father start to destroy your mother

    With sleep deprivation and psychological attrition

    You can take no action and find no remedy yet just stand by

    You watch

    And you see he cannot see

    What he does again and again

    You pray he has no knowledge of what he says or does

    You watch

    Your mother becoming angry

    And cursing your father

    Who she loves so dearly

    You watch

    And it seems there is nothing that you can do

    Or offer to make things better or to go away

    Except you are there and see and feel

    And are subjected to the same.

    You watch and wait and watch

    ………………………………………

  5. Seeing any living being suffering like this, and not being able to help them or make it stop, is hell. Not much to say on this, but I've been that situation enough that my heart goes out to you and everyone else who sees it so regularly, at home or at work.

  6. It's the lucid ones that rip me up, the severe dementia patients who are off somewhere else often seem to be much comfier.

  7. If she does hours and hours of paperwork and jumps through a few hoops, and the family income isn't too high, and a load of other ands, and she cares for her mother at least 35 hours a week, the government might give her Carers Allowance!This is the princely sum of 46.95 per week (with deductions made for anything else they earn or recieve, naturally, we can't go giving people who really do care and therefore do a very hard, very necessary, very thankless and very good job for high-dependency adults money they don't desperately need to scrape by).

    As stated, the patient must need and the carer provide at least 35 hours care a week, so that's about 1.34 an hour, maximum.

    In cases like this, the 35 hours is a joke, the care is a 24/7 job. The money, however, is the same. 46.95 a week.

    Any other support for carers – financial, emotional or practical – is supposed to come from charities and voluntary organisations, not the government.

  8. The slow attrition of the soul, having recently seen several grandparents suffer this way, now my father in law has been diagnosed – today's title is perfect for this situation. The Poem (comments above) is excellent and am now reaching for the tissues. It would make a great eulogy, and deserves to be published somewhere.

  9. Robin.Thank you for the comment, unfortunately untypical, the government really don't care once you stop paying taxes.

    As for the poem – you had me wiping a tear away from my eye as it is something that I have seen time and time again. It is quiet simply moving.

    Thank you for sharing.

  10. If she was crying, she wasn't unaware – just unable to hope or feel happy. Imagine that misery, and confusion, are all your world. For the rest of your life.I admit this post has haunted me, and I'm not being argumentative – but, to be lost in a maze of bewilderment where everything hurts? that's got to be, hell, whether or not you think the supernatural definition has any relevance.

  11. Not sure how to respond or what to write sorry.Thank you for all your words.I was not sure whether to post or not initially.Please feel free to use the poem or post it, or whatever.I have a couple of others that I wrote but this is Tom's blog and not poetry corner.:-)

  12. One of my in-laws went through exactly this (MID). You captured perfectly the feeling of those of us orbiting around. Watch and wait and nothing anyone can do. He even asked one of his sons to kill him during a lucid moment when he still had those moments.Thanks for writing, and for the poem.

  13. Can the government (who I loathe) get into her head to right the wrongs though?Not letting them off the hook – I agree there's a carer here who needs adequate financial support, respect (ie not having to grovel and beg in triplicate for every penny) and so on…. but that's not something even B.Liar and his Mindcrimes Ministry can fix.

    A quick investigation into the causes of the increasing rates of dementia (and don't give me, “we live longer”) might be nice.

    Might be nicer yet if it didn't involve the pointless deaths of hundreds of thousands of lab animals…

    Eg, if it looked at known toxins, looked at the bizzarro world way we're exposed to them yet are meant to think they're suddenly Good For Us, and also ignored the big bucks payout conclusions, and just took action.

    In tribal societies, before big (chemical) business took hold, the old were noted for their wisdom – now they're noted for their dementia – go figure.

  14. They make my soul angry. They make my head, angry, too. My heart, liver, toes…. Not that I start revolutions to do anything, but a little bloodymindedness heals the hurt soul better than tears. In my experience.Make this feeling count, in the way that makes the best sense for you – then you've done what you can as a human being and can rest.

    (the auth. code for this before I previewed it for typos was “fabla” which I take as a sign from the bloggin' gods they agree. Humph.)

  15. One of the biggest things I've learned from working in EMS so far is just how much getting old can SUCK. It's disgraceful how we treat the elderly.

  16. 'Tis why one calls these years the Goldern years, We gets rid of all the gold that we ever got. I be reading the Obits to see so many my junior depart, that It gets to me, seeing old friends with Alzheimers [ no 8 on the list of choice of giving up the ghost after the pump fails [1] to push blud thru the system or it springs a leak in the 'ead [2], or the lungs [3,4,5]fail to give the blood required oxygen], fail to remember who I be.Alzheimers is the Disease that has become more prevalent [increase of 220%] all the other leading causes of death have been reduced except for Diabetes according To the Los Angeles Times.

    As an Old codger, I want to be able to breath and occupy space but at what cost. If I had a choice which I do not have, it would be a coronary, as natural death is not on the list, all the others are long term and painful.

    As Dr Dodgson of Alice in W L, fame has infered, there be no hell as he does not Know of any that went , so I presume it must be us that staid around to watch will find out.

    'Tis thanks to people like Tom that we get an extra innings after falling at the 'hurdles of life. To all those that have watched a love one's life ebb, I hope that you will remember all the good that they have done, and forgive them for their weaknesses.

  17. Tis why one calls these years the Goldern years, We gets rid of all the gold that we ever got. I be reading the Obits to see so many my junior depart, that it gets to me relising how lucky I be, seeing old friends with Alzheimers [ no 8 on the list of choice of giving up the ghost after the pump fails [1] to push blud thru the system or it springs a leak in the 'ead [2], or the lungs [3,4,5]fail to give the blood required oxygen], fail to remember who I be. along with all the other leading problems.

    Alzheimers is the Disease that has become more prevalent [increase of 220%] all the other leading causes of death have been reduced except for Diabetes according To the Los Angeles .Coronors Office via the LA Times

    As an Old codger, I want to be able to breath and occupy space but at what cost. If I had a choice which I do not have, it would be a coronary, as natural death is not on the list, all the others are long term and painful.

    As Dr Dodgson of Alice in W L, fame has infered, there be no hell as he does not Know of any that went , so I presume it must be us that staid around to watch will find out.

    'Tis thanks to people like Tom that we get an extra innings after falling at the 'hurdles of life. To all those that have watched a love one's life ebb, I hope that you will remember all the good that they have done, and forgive them for their weaknesses.

  18. I'm not particularly of a religious persuasion, but the Bible does say that we should “take care of our widows and orphans”. I think it is more about the breakdown of family and extended family structures that leads to the old and infirm being abondoned by society.

  19. A story line in ER, some time ago.Alan Alda played a Consultant who had been very much admired but was dementing. When he told his old freind and fellow Dr that he would end up in a home she said she would come to visit him . He replied “But I won't know you are there”.That kind of summed it up and brought on a good blub.Dementia is so cruel

  20. Thank you for the poem, it expresses a lot of the feelings that i remember while I watched my father die of this illness. A long time ago now, but I dont forget. The illness itself is bad enough, to have to fight to get help with looking after someone with this illness adds insult to injury. (Lets not even start on the NICE guide lines which will be depriving people of the fairly low cost medication for Alzheimer's Disease!)as part of my job I often work with Carers (of this illlness and others), often elderly people themselves. We try to offer support, but whatwe can offer is little, and seems to be shrinking year by year. We offer the minimum amount of care – often it feels like an insult to offer it, but it is all we have.

    WHen I am feeling angry (rather than hopeless) for people in these situations – I talk about discrimination.

    Institutionalised discrimination from the top down. Why are older people with disabilities only able to claim the ATtendance Allowance after 65 (rather than Disabled Living Allowance)? This does not allow any extra benefit for people who have mobility difficulties. ANd what section of the population are more likely to develop mobility difficulties? well, elderly people (but that's all right because WE will be Ok with our posh motor cars)

    OK, rant over.

    I will keep on doing this job because I feel i can do it as well as anyone else and with more humanity than some.

    And because I like people. (not because I have a deep passion for fullfilling the targets that are set by government, seemingly more and more each week)

    wow, its been a long week…..

  21. my aunt has dementia, we had to make the heart breaking decison this year to put her in a nursing/care home, she regulary requests that myself and my mother give up work to care for her, which neaither of us can do, we both tried to care for her at home for months, but we both ended up having time of work sick due to the stress of looking after her, reciving reperted phone calls at early hours saying she wanted to die and had taken an overdose, or she didnt know who or where she was, needing us there all the time, and working full time as well. we became her careers rather than her neice and sister. It is soul destroying to visit her and i come out in tears everytime i leave.Both she and my uncle(who died 7 yrs ago) were unable to have children worked all their lives and saved, and now all that hard earn money is just about paying for her care, and we have to fight the goverment for the slightest bit of help we can get. The system just doesnt work for the elderly!

  22. Well, I'm a Christian and can assure you that you are absolutely correct. Nowdays we take that to mean that we take care of single parents and their children, for lepers read HIV sufferers and social outcasts. Families do travel further away from their extended family often for work so it's all too easy to neglect the independant eldery who insist they can cope despite there being few safety nets when clearly they can't. Personally, I'm grateful I'm part of a large church family! I have baby sitters available, People of senior years for advice and they have us when the going gets tough.

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