TRYING TO DEAL WITH

A LAYMAN'S VIEW

One thing to remember before any hard and fast rules are applied is ................there are none, and the person with dementia has know idea she or he are any different than they've ever been. It is not their fault - or God's or yours - just a breakdown, or malfunction that won't get better although with the best handling may grow very slowly. Therefore the best medicine is love - now that may seem obvious, but some people can't handle it, and some people didn't love enough. Even now when I could be called a veteran carer I still make mistakes - still loose my temper - still don't realise it is futile to get mad - patience is a tool that calms - coaxing beats telling hands down. It's not so strange that things get worse nine times out of ten after you loose control. Because afterwards the person with dementia who really loves you whispers something like "She was awful" meaning this person she thought was trying to make her do something or other - it is never the one she loves - which is me, but always this other me.  That alone should give me strength to cope, but being human I often fail - especially in the middle of the night.

Since my knowledge of dementia has developed  things have improved, and will continue to improve I expect - despite the battering my feelings take, but let's face it not  many years ago dementia sufferers were placed in secure institutes and declared mad  so little was known of the disease - thank God these practices  have ended. I never knew any of this at first as dementia is so complex, but over the last couple of years I've learnt some valuable lessons. First you take on the guilt - it can raise its ugly head as anger - injustice - or just plain - why me? These feelings will remain , but very slowly as soon as you begin to realise that the one you love can't help it - everything diminishes in size. Oh you'll still have those moments when you'll feel you're so hard done by, but never again will you feel unable to cope. As I've said before two good daughters and a family are the biggest help I've had - and there isn't one person in our family who doesn't care - bless `em. To my mind a secure care home is the last place someone with dementia needs - it doesn't matter how good these homes are, they still can't replace the persons real home - even if the dementia sufferer continually tells you they are not in their real home - it is still the best place for them to be. 

My daughters knew long before me that distraction was a wonderful tool - it sets the conversation on a different course - it doesn't always work if the sufferer has already started on another part of what they hold in their head, but at times that is all the situation needs. Most of this is because the links to various parts of the brain holding data from the past are broken or mixed up - like getting the number wrong on the telephone call  - you wanted the States, and you got China. I've just realised most times when I have a chance to write anything is when things are quiet early in the morning - when all hell breaks loose I'm not recording a thing - only in my head. Take yesterday evening - all appeared relatively calm on the surface, in fact you could say we were having a purple patch, but by the time we sat down to watch a little television I could see Irene was getting anxious. She is always anxious as the light fades in any case - or on very dull days - so we put the lights on, but this was more than usual. Staring out of the window denotes I'm not here, and the other nice man - that other me is with her.  If I handle it correctly we may move on, but at times I know I'm in for a few hours explaining over again who I am, and where we are. On occasions one of the girls ring me - as if by magic, and the situation is retrieved. Leaving the room, and coming in again all perky can do it - then she tells me her troubles and I calm her and tell her we won't be doing what ever it was she was troubled about - it isn't easy it takes patience.

The countless situations that occur would fill a book, but writing that book would probably melt the brain - so complex are the happenings. We've had a doll for a number of years that our eldest granddaughter Leanne loaned Irene because it was so realistic - it was given long before dementia set in, and was more of a decoration from the start - living on a white cane chair in the bedroom, but dementia saw to it this would take on human form as the disease took hold. Fortunately with my continually straightening up of one leg it went back from whence it came, and I swear I didn't turn the leg off deliberately? It's favourite past time was to sit in the window watching the people pass by - God knows what the neighbours thought.

Just lately a photo of our youngest daughters children - Paul and Kim has been able to see, or so Irene thinks. More often than not Irene asks - when I bring a cup of tea into the lounge "Did you ask them if they wanted a cup" Most evenings she talks to them, and ends up facing them towards the television. She has know idea they're our grandchildren and they're in a photograph. After saying they were a very nice couple this week - she asked "Do they have any children" I told her they didn't, and added they were coming out on Wednesday with all the family for a meal on my birthday - she was delighted. It might seem trickery, but believe me it is far easier to manage than explaining the same thing over and over again. Just later I'm realising that pain has the ability to even quell dementia - remember Irene has Osteoporosis as well, and lately the pain around her ribs has been at its worse. Only this morning she struggled out to me, after dropping of to sleep after that first cup - and wanting the bathroom she uttered "Take me to the hospital" of course there is nothing they can do - apart from administering an even stronger pain killer.

I find in putting all this down on the page a certain amount of guilt comes to the surface as though I'm revelling in explaining my situation,  but how else can you help others in a similar situation if you don't spill the beans? The girl I married was, and still is the sweetest person I could have found, and at times all this becomes unbearable for both of us - this Osteoporosis alone was enough for such a little angel. If she had been a Hawk instead of a Sparrow maybe she wouldn't have ended up with either disease. Her whole being is that of a delicate lady - the job she worked at before marrying me was a lingerie machinist - it was delicate work. For those as daft as me who didn't know it was spelt like that - it means someone who makes women's under garments - which was, and still is very delicate work indeed. The pastry she used to bake was delightful - it flew of the plate, again delicate - I  manage with Just Roll now the one where it is also rolled out in sheets.

I once believed a mans role in a marriage consisted of doing the hardest jobs, but now when it is far to late I see how wrong I was. Of course a man should help when a woman struggles, but if a wife can cope and do any job, no harm is done, and bone and brain are strengthened. Talking of bones the doctor rang saying the results of the scan Irene had on Monday had arrived, and she is going back with our youngest daughter Larraine on Thursday to hear the results. That's pretty quick - I only hope she doesn't have to go in. I remember how hard it was for my dad when my mum developed dementia - he was so frustrated, and by early morning he used to pop round my eldest daughters place for breakfast leaving my dear mum alone - Pam's was just a stones throw away, but that is the nature of dementia - it can send the carer loopy. Soon after that they both came to live with us - that is until my dad had to go in a nursing home with cancer of the throat. My mum became to hard for Irene to manage - I was still working you see - she never forgave me for abandoning her and placing her in care. I tell a lie - after falling out of a chair, and breaking her hip in the final home - she went into Poole hospital, and while on drugs it took the anger away, and she told me how much she loved me.

With work, and two places to visit twice a week we switched on auto pilot - this went on for a couple of years. I remember telling my mum after she'd been taken to Christchurch hospital that dad had died, and it destroyed her. On the very next visit she'd  forgotten, but I never told her again it was kinder for her to think he was busy. Her favourite saying when he continued not to turn up was "He couldn't care less" were as Irene's when I push her to do something or other is "You don't want me" Fortunately if you've got any sense you learn to turn off, but at times it makes you sad, and sometimes angry too. My mum never did leave that hospital and died refusing to eat or drink.

The Kings Park psychiatric hospital was an eye opener although I only went for three weeks - you see they hold an afternoon session once a week for the carers. Although it was a very short period this was invaluable and it started me off on the right track - although as each week progressed other peoples tales depressed me. How both my daughters went for a year beats me - Larraine said the opening session when everyone had to introduce who they were - in relation to the one they were caring for - broke your heart.

I do remember when my darling mum had to be assessed there was every type of person there, and from all backgrounds - rich and poor - young and old, and not even a curtain to hide the emotions. To say they were doing a magnificent job under the circumstances was an under statement. On that awful day sitting to the right of my mum was a well built fella with an open neck shirt - although the shirt was as clean as the day it was purchased it had a long gravy spill down the front. Next to him in complete contrast was a suited chap about the same age, wearing glasses and sporting an Errol Flynn moustache. I was trying to comfort my mum when the gent turns to the big fella and says "You've got my wife's coat?" at first the big guy just stared at the gent, and I was expecting something to develop, but instead, this tough with the chewed hair - who looked like he could have built a road from John O'Groats to Cornwall on his own - shrank away from him holding his coat out of harms way. After a couple of minutes of shuffling in various pockets the toff produces a tiny piece of paper, and an equally small stub of pencil  and utters, "Can I have you name and address?" Dementia has the ability to turn even the most sophisticated of us into a comic form, but even then you retain a little of what was you.

Now lets talk about care homes, from large, small, expensive, cheap, private, and those run by the council. I can honestly say I've seen my share -  because from the age of sixty I saw a good cross section of them all. Surprisingly from each I encountered both the good the bad and the ugly. You can pay enormous amounts, and still get rubbish. It doesn't matter if the decorations are a little shabby, but clean - as long as the patient care is there. When it comes to care I'm ashamed to say people from other lands have this in abundance - is it because we have moved forward in other skills which lowers the ability to care? I do hope not. From all the lands of the world I have found the Philippine people to be the most loving - followed by the African Nations. I do believe they probably haven't been soiled by  greed, or any other Western habit.

During the struggle searching for a good home for my mother, father, and Irene's sister I saw horrendous examples of care for both the elderly and the sick. Luckily the horrendous were very few and far between - although they still operate because the worse are still needed. Luckily my dad went into a good nursing home, and he was able to bribe the cook occasionally to dish up an even better cuisine than normal by introducing the magic fiver now and then. I failed to mentioned the lovely people from Poland? These too are magnificent in the skills of tender loving care - is it because they appreciate less hardship over here.

I once did some decorating for a lady called Gladys Jones she was a lovely person, and a dietician. Sadly she ended her days strapped in a wheelchair in a council run home. During the years I worked for her, and after a roof fall she administered healing to me on several occasions. Whether you believe people have healing powers is up to you, but there was something rather special about this lady. In her lounge there was a pencil drawing of her mother which had been drawn by a psychic artist. She assured me it resembled  her mother in ever way even though the artist had never known, or seen her. Life has many lanes, and it is in our nature to explore them to deduce what we can, but the older I get I'm certain life isn't just about the world we live in. Sadly in our development most of us have lost certain senses we once had - but a few are able to develop them and use them for the good of others.

This is probably the last I shall say about my experience of both dementia and Osteoporosis - the strange thing is the pain Irene suffers from the bone disorder is at the moment out weighing the confusion she gets from dementia, and who knows perhaps this is how it is meant to be. Pain killers dull the pain when administered correctly, but as anyone knows these have side effects too - so you give the patient something else to relieve what pain killers create - it is just a vicious circle. This little person has had far to much to cope with, and I feel she needs more care than I know how to give, but to abandon her to others care would finish me so Irene stays with me know matter what. The frustration over whelms me at times and is enough to change me in her eyes to Mr. Nasty - when all the time I need to be her mate Mr. Nice. In conclusion remember despair doesn't last for ever, but sadly nor does life its self - all we can hope for is a rebirth into this wonderful and tormented world.

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