What is Dementia

Dementia…. Alzheimer’s…. before you read on, say these words, think about them… what do they mean to you? What do they really mean to you?

Firstly, there are twenty-odd different forms of dementia, all subtly different in form and origin, but all displaying virtually the same external signs. I will use the word dementia to cover all of them

To me they were the rumour, the bogie man, something to fear…but  I had seen elderly relatives  succumb to dementia, you can somehow accept it in someone in the 80’s or 90’s more easily… yes, I had laughed at some of the more extreme things they had done… flushed false teeth down the loo, thought Trevor MacDonald was a friend who visited them every evening to tell them what was happening in the world, worn a tea-cosy as a hat… all these things and more, but that was all I had not seen. I had seen the truth of it… and neither have the majority of people in the country.

That is why the public at large do not understand the condition… do not understand what it does to sufferers… have no concept of what it does to their carers and family… and have no idea whatsoever that there is virtually no understanding of the condition, or support, whether financial or practical, for sufferers and their carers. They are basically on their own wading through treacle to find some non-existent help or resolution to a situation that can wreck so many lives.

You know what… It makes me bloody angry. Angry and frustrated that there is so little support for people, such vulnerable and needy people, who deserve so much more… whose families and carers deserve so much more.

I have now seen it at very close quarters and it has opened my eyes, it has frightened me and horrified me.

Never again will I fail to show these people the respect and dignity they so deserve. These conditions do not discriminate, there is nothing that can exempt you from it… not age, race, creed, size, colour of hair or what football-team you support… nothing. Every one of is susceptible. It is not brought on by lifestyle, it is not a lifestyle choice, and dementia is a hideously destructive condition that destroys sufferers, destroys their carers, destroys their families.

So what is it that makes the condition so awful… where do we start. For most people you don’t wake up one morning and have dementia, it builds, it grows… you see odd clues, but you cant recognise them other than with hindsight…

The memory isn’t so sharp, especially short term memory. It gets more challenging to make a cup of tea… perhaps you put in salt instead of sugar… The sufferer will get frustrated at these small changes, but to start with they will realise that they are wrong, but have no power to put it right. The carer also knows it is wrong, knows they can’t do anything to change it… deterioration can be slowed down… but it cant be stopped or prevented…

The sufferer will live in a twilight world, unable to make rational decisions, unable to look after themselves, but probably being aware they are deteriorating. Can you imagine that, how that would feel? For the carer, all you can do is help, try to help, try to make things easier… but it is not easy.

As the condition deteriorates, as inevitably it must, it becomes harder for the carer to help, the sufferer has less and less control of their body and mind and needs more and more support to simply exist.

Simple things we take for granted, brushing our teeth, choosing a shirt, making a cup of tea, knowing we need the toilet, are impossible decisions for the dementia sufferer… the carer has to think of it all.

Patience wears thinner for both, because this isn’t a nine to five condition, the carer is coping with their loved one around the clock, twenty four hours a day… there is no respite from it, because even if you do get some help, it is constantly weighing your mind down.

Patience wears thin, tempers fray… it’s inevitable… and the atmosphere in the house deteriorates… living is now almost impossible for both, for everyone involved. If you aren’t lucky enough for the ‘patient’ to be admitted to nursing care or hospital, you have an infinite battle, living your whole life purely to support your loved one… no social life left, no time for it, no energy for it.

If on the other hand they are admitted, don’t think it is any easier… there are some fabulous nursing homes out there… quite wonderful. There are however a lot that are less so… how can you tell which is which when trying to settle your loved one? Very difficult, there are extremes at each end that are obvious, but the majority are between, and the of course the difficulty is that the quality of the home is basically the quality of the staff… you can go to an awful house on a day when their better staff are working, looks different… or a good home when a poor staff member is in… again a false impression. It is important to find real unbiased professional help and advice.. But where from? I don’t know.

So, if your loved one is in a poor home, you will never again feel at peace, you will be constantly guilty about making a bad decision, constantly in fear of them suffering more than they need.

If they are in a good home there are still concerns… you are focusing on the condition… you are probably heartbroken that your loved one is missing out on life, is alive, not far from you, but cannot connect, cannot enjoy any of their hobbies or interests, could be missing out on seeing their cherished grandchildren or great-grandchildren… you can’t enjoy them yourself as you should for this reason.

Finally, with dementia, you cannot say “I’ve got toothache” or “my glasses need changing”... you could be suffering any number of physical problems, pains, without being able to make them known, without being able to get them treated, or ease the pain.

Two definite factors with dementia are that it is irreversible and it will shorten the life expectancy. God forgive me for thinking this… but that is the one bright thing… I simply can’t bear to see my wife suffering like this, potentially for years… she is not happy, probably not unhappy either… she just is… that, for me as a carer is the most painful thing… the bit I can’t cope with, and I will never be able to cope with.

So, next time that elderly person wears a tea cosy, next time they lose their teeth, next time they can’t find the way to the toilet in their own home, don’t laugh, don’t mock, don’t get annoyed… understand… it is a condition they haven’t chosen, can’t control, it is the condition behaving that way… not the person.

If that doesn’t help, think of this… in six months, it is as likely to be you as anyone else in this condition… do you want to be laughed at, mocked… of course not… understand about dementia, accept that the sufferer didn’t choose it and can’t control it… treat them as you would want to be treated, help them support them.