Quality of Life in Dementia

 

After the diagnosis of dementia many liken myself, are left feeling sad, and are left with nothing but negative feelings, as life as they know it is changing fast, and they have no idea just how they or others will cope with things from then on.

However my second consultant changed all of that within half an hour, as she told me to expect changes, to accept them and move on, as fighting could have the wrong effect.

In her words:- you may struggle to do something one day that you have done for years and may not succeed in doing the project in hand. If it fails, leave it and try again another day.

She said that there was a danger in getting quite depressed at not being able to do things, and therefore I should be careful, and think about it.

These words have kept me going, because I have lost the ability to do many things including hobbies, but I still have a life to live and will continue to do so while I am able.

But to many people who get the diagnosis of dementia, life as we knew it has come to an end, but many are encouraged to get involved with charities such as the Alzheimer’s Society where they can get help and support both for themselves and their carers.

To have a good quality of life we all need the support from others and not, be invited as the token person with dementia as I have heard so many times before

This path can take many routes, but like myself, many get involved In meetings which are helpful to us, and allow us to help others by changing the way those with dementia are treated within society.

But this is littered with problems, as some people that I have come across, resent us giving our ideas as they think we don’t know what we are talking about, or they speak in medical jargon etc., which is very hard to workout what they are getting at and remember.

This is in my view sending out the wrong message and must be changed once and for all.
But it should also be remembered that everyone, with dementia is totally different, and they react in different ways, no one size fits all.

By that I mean that some people can retain information where others find it difficult. Many like myself try to make notes as words don’t always come easily, and sometimes the wrong words come out leading to people thinking we are rude or aggressive, something that annoys me as it proves these people really don’t have a clue about dementia.

As someone said only the other day, not all forms of dementia follow a pattern as laid down in the text books, and many with the same form of dementia are vastly different, so please make allowances for us and give us the time to assess what is happening and answer in our own words.

Don’t make the mistake that many people do, and that is ask a question and then try to answer it for us.
It is my view that those with this illness should push themselves to the limit if they can in the early stages, as it would be very easy to give into this illness.

I must add that I am in no way restricted in what I do, as I still enjoy photography, walking and painting on good days when I can get things in the right prospective although these days are running out slowly, but there are limits to how far I will go before I stop myself, before I get frustrated at my inability to do things that I have done for many years.

As I have said before I use assistive technology in most of my hobbies, as it helps me carry on doing things like photography, and although it gets tiring carrying all the stuff around at times, it stops me thinking of what is around the corner. There are many gadgets to help in this hobby such as tripods and remote control gadgets for the days when my hand shakes, but this does not stop me enjoying life

I agree that not everyone shares my views and I would not expect them to, as we are all different, and have different views, but at least these are mine and they have kept me going.
My quality of life now also takes in a lot of assertive technology, from hearing aids which have enhanced my hearing, to the buddy tracking device and voice activated software on my computer, all of which has enhanced my life, so I am not giving up.

As far as I am concerned I have a good quality of life and would like to hear from other people with dementia and hear their own views on this topic.

I also know that I am extremely lucky to still have the freedom to do what I want at present, but others are not so lucky as me.