In A Different Place

Long time no scribbling…

Primarily because I’m a full time carer for my Mum who is in the final stages of dementia. Following a heart attack whilst in respite, a less than stellar experience on an understaffed hospital ward where she soon contracted hospital acquired pneumonia and a succession of other infections ( hospital is really no place to get well) she was sent home with a hastily prepared care plan.12873544224_d6c88ebbb6_z (2)

Hospital for the elderly is frequently a risky prospect in that they are vulnerable to infections whilst in there and their needs are poorly catered for quite often. Money, politics, culture etc.

Naively I was gearing up for rehabilitation but within hours of being back in her own home a visit by the home visit doctor (a whirlwind of testosterone and an over abundance of swagger) adjusted my horizon.

In that way that the medical profession have of medicalising people he pronounced the hospital experience a “terminal event”. He promptly withdrew all preventative medications and signalled end of life care.

Suddenly all the things it had been hard to access prior to this point care-wise soon came to us somewhat easier. We had a Macmillan nurse, district nurses, palliative care, telephone support though it was still me doing the bulk of the caring, feeding, nutrition, medication, signposting only with much less time off than previously (bye bye daycare, so long respite).

Mum is bed bound, in and out of delirium, barely able to eat other than liquidised through a straw. That aside there are moments of brief lucidity, smiles and laughter punctuating the pain and confusion.

We finally had to resort to diamorphine injections such was her level of constant anxiety. It’s a great drug for relieving suffering but it does remove the last vestiges of a slim ability to communicate. It’s perhaps the drug that clarifies that the end may be nearer. It’s use may be too soon, I’m not sure.

I constantly think the end is very near and then Mum bounces back. But dementia only goes one way. So it’s still end of life care with end of life options.

It’s  still very tiring but I wanted to do this

It’s been a steep learning curve. I fell out with my brother over doing this and found my partner could not help either. You have to accept that those closest to you might not be able to walk that path with you. We all have different qualities. I didn’t think I could do this either.

So, for now I share the final weeks, months with a declining parent who doesn’t know who I am, who can spend an entire night screaming, singing,frequently both punctuated by the kind of sleeping a cat would be proud of.

Image by Sketchless Phorography via this creative commons licence

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No Time Time

Today was a ‘taster’ day or rather an assessment of suitability for accessing adult day care for dementia Mum.

Providing Mum with enough mental stimulation is perhaps where I worry I can’t quite match up. We were never super close. She was always a glass half empty person. She never really had hobbies and the personal interests she did have now don’t appeal.

It’s hard to get Mum interested in anything much aside from looking at the birds in the garden. The rest of the time she bemoans the sheer pointlessness of her existence. But then that’s how she always was. Amazingly dementia occasionally gives her a child-like sense of wonder I’ve never seen before. But things turn on a sixpence (to quote a pre-decimal currency saying).

The fibre optic novelty light that held her transfixed can suddenly become something that’s “not up to much”. I can relate to these change of moods as they mirror the black cloud that can so suddenly descend on those of us who cope with depression. Out of nowhere a sense of pointlessness.17970644621_9c0886b852_z

As is the case with today’s flurry of mental stimulation. All laughs when I picked her up after her few hours sampling day care. Now she says “I’ll pay for this” and it was all too much. Good experiences often get re-experienced through rain tinted glasses. Pick-me-up experiences become pointless, distressing, nightmarish. Reality and the unconscious, the dream world and the imagined are all valid. You can’t tell a dementia sufferer that something is in their imagination because imagination is as real as the supposed ‘real’.

Anyway the specialist day care centre is happy to have her one day a week. Maybe it’s more about giving me a break than giving Mum a more stimulating environment.

What do I want to do with this time off? Sleep. Just sleep.

Image by Mexgolam under this creative commons licence

Where Are We Now? Fun In Dementia Mum Land

In February my 89 year old Dad died suddenly after a few days of illness. He went into hospital on a Sunday. By Monday morning he was diagnosed with leukemia. By midday he had died of a bleed to the brain. After a lifetime of good health it was characteristic that he took a ‘no faffing’ approach to leaving us.

He was the main carer for his wife, my Mum who has dementia. They both always resisted our help though it was becoming evident that standards were slipping and their home was getting grubby. Dad also wasn’t a natural carer despite half a lifetime teaching first aid (you know how it goes. Up there with hairdressers with appalling hair, unhealthy doctors and teachers unwilling to learn new skills).

So it was a bit of a shock as to how much was not being done for

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Mum. I can’t blame Dad. He was 89. He learned to cook, to a fashion, at age 85 but on the whole he left Mum alone for hours and didn’t really check her state of cleanliness. Nobody is perfect. We all do the best we can. In addition I may not have realised quite how much Mum had declined in recent months.

So, since February my old non-life was suspended and I became her carer. It’s been a steep learning curve. We were left a mess financially. We have no lasting power of attorney. We haven’t even started processing Dad’s will (and despite decades telling us that all details were in his wardrobe and  who the solicitor was, both turned out to not be up to date information).

Add to this a very violent disagreement with my sibling over caring for Mum and as many carers have found, the complete evaporation of family and partner support in caring for an aged parent with care needs. Add my own battles with mental health issues and worries that despite doing better than I would have imagine, it is very early days and I could be quacking like a duck by Christmas.

It’s a reversal of roles. I am the sudden responsible adult whist the former responsible adult is like a confused, frightened child who has no idea who I am or my relationship to her. Tears, tantrums, humour, pathos and a broken, underfunded care system.

It’s all been like an ongoing soap opera. As life often is.

And it’s ongoing.

So forgive me if I think outloud here in future.

Image by Otto Nasser under this creative commons licence

Costing Complimentary Medicine On The NHS

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more about “Truth behind NHS’s homeopathy budget“, posted with vodpod

The data we have shows that from 2005 – 2008 almost £12m was spent on Homeopathic remedies by the NHS.
This works out at an average cost of £170 per episode, per patient with a remarkable £3067 cost per inpatient.

Interesting piece about homeopathy costings here when offered via Britain’s NHS. In the early stages of my meniere’s, in fact before it was correctly diagnosed, I was actually sent to the Royal London Homeopathic Hospital.I had an open mind.

Therein I was in the waiting area for 2 hours (this was the early 90’s and the place didn’t seem particularly busy in the way a hospital often seems to be). Once I was in the consultation room it was decided that I was to receive accupuncture for my tinnitus and then emerging dizzy spells.

This took the form of burning needles placed along the upper part of my bare feet(yeah like I’d keep my shoes on but thought I’d better clarify). It was painless. But was it..er…pointless? (sorry weak pun alert).

Peace And Love

I was warned that (in a Ringo Starr ‘warning you with peace and love’ kind of way) that once the accupuncture had been completed there was a danger that I would experience a “rush of euphoria” at some point over the next hour and a half whilst travelling home so I should “just be careful”.

I was a model of caution on my journey home by tube and train and made sure as much as possible I didn’t stand too close to pregnant women, small children or those of a particular infirmity in case I was to literally explode with energised joy whilst in a confined space and perhaps might cause inadvertent injury or distress to those unwittingly close by.

I’m sorry to report that nothing euphoric transpired during those 90 minutes or indeed during the weeks following.

Quack

I hadn’t asked for a homeopathy referral but my GP must have taken this alternative approach seriously. Perhaps there was evidence that the power of the placebo effect for some outweighed the cost of bouncing around the NHS referral system until an adequate specialist hit the nail on the head. Perhaps I was classified as an hysteric for badgering my GP over things that seemed awry with my hearing and balance? Who knows?

In the end some months later I attended a specialist ear nose and throat clinic in London whereupon after a cat scan, a poke in the eye with a lengthen piece of cotton wool and the pouring of hot water into one of my ears (yes now doesn’t that sound like quakery when I actually write it down?) I was diagnosed with meniere’s.

Playing The Lottery

These days the NHS is a postcode lottery and heading again for a huge funding shortfall so no doubt many less proven complimentary services such as homeopathy and even, dare I say NHS funded counselling (the evidence for the latter’s effectiveness to cost ratio is not clear cut by any means) will no doubt face some tough reassessment within various PCT budgets.

Related meniere’s posts

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Deluding Yourself And Normalization

nlpI’m currently wading my way through another book on Neuro-linguistic programming albeit one of the ‘dummies guide to’ variety.
It’s fairly well laid out and compared to some tomes on the subject it is pretty light in tone.
I’ve spent a few years flirting with NLP and even attended an evening course at a local adult education outlet in order to find out more.

I have to declare that I’m a natural sceptic with an open mind on most things. Having studied psychology in the past and as someone who unsuccessfully tried psychotherapy I am prone to cherry pick the elements of NLP that I feel should work and why I feel it should be more effective than elements of psychotherapy that can become bogged down in what I see as the dubious merits of a more Freudian approach to people and their perceived problems.

Don’t Normalize Me

In that respect I’ve always been more drawn slightly more to a  Jungian way of thinking together with a humanistic view of people and problem solving. I’ve never been a great fan of psychotherapy. My forrays into psychology and counselling  seemed to me to show that too many disciplines saw human beings in very narrow mechanistic ways and revealed very little about human nature as it was experienced. Putting people into boxes may be what we all do to some extent but it also fosters the notion that people themselves need to be ‘normalized’ when it may be that people are just reacting to an environment that is forcing them the behave in a very un-human way and hence an internal conflict results. Normalizing people to fit into an unhealthy environment seems, to me anyway, a less than noble goal.

Picking Holes

That’s not to say that I don’t pick holes in NLP. The class I attended was a serious let down in that I took an instant dislike to the tutor (sorry but the words ‘self important dickhead’ were never far from my mind) and my feeling was that many of those attending the course were not especially interesting in NLP per se as more just looking for a ‘gravy train’ escape route from their current jobs in order to become NLP therapists themselves. I was honestly (guv) just there because the subject intrigued me. I had no delusions regarding myself going forth and ‘healing the sick’ with my new found powers at a high hourly rate if you please.

Cynical? Moi?
Indeed one of the things that leaves a bad taste in my mouth around NLP is that it can easily focus too much on what I see as quite narrow minded goals whilst ignoring the reality of the world and the social problems within it. Like much counselling ad psychotherapy it can become distorted by our societies narrow individualistic approaches to solving problems whilst ignoring the impact an environment or culture has on an individual. OK so you get what you want or you train you mind to feel that you get what you want whilst feeling better about those that are kicking you metaphorically in the face everyday because the system we live in rewards that?

Yet Another Way That Doesn’t Work

My worries over the positive mental attitude aspects of NLP over and above the need to extricate oneself from unhealthy environments is perhaps summed up by a quote in an article on the BBC news site that looked at how mental health professionals were now being employed by the government to deal with people who were long term unemployed with depression.

It’s that aspect of continually papering over what may be a hopelessly bad situation by re-framing an appalling environment with better feelings that still has me concerned over some aspects of NLP. At what point do we throw in critical thinking and standing up for yourself come into play if at all. Or are we saying that a different mental attitude will melt away other ‘bad thinking’ that we may randomly encounter in the world?

Maybe I’m just too riddled with British cynicism to fully delude myself enough to give NLP a chance.

Photo by psd under this creative commons license

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