Friday, 14 March 2014

Can you live well with Dementia?

While we were at a meeting we heard someone ask if it was possible to live well with dementia and that made me think, because it came from an old age psychiatrist.

 
 I sat and thought about this for quite some time before starting to write, as part of me was calling this person an idiot, but the other part was asking if he really knew what it was like to live with this illness

I guess it all comes down to getting a timely or an early diagnosis and then the correct support, help and guidance you need to get on with a new life.

 I do feel that most of this hinges on being diagnosed at an early stage, and getting medication, so that you can achieve a good quality of life from there on, although I do believe that it’s all down to the diagnosis and how it is handled by the consultant.

But you really have to try accepting the diagnosis, and try to be positive, even though, it’s going to be very difficult.

Find friends who are supportive, yes we all lose friends after the diagnosis, but are they really true friends when they go like this.

Find local support groups and dementia charities, which can help, and meet new friends who may well do different activities.

It also comes down to accepting your limitations and not trying to do the impossible,

Trying to work with your problems and not fighting them all of the time, so you end up feeling sad and depressed

Accept the failures and if possible try something different

Understanding that life will not all be a bed of roses, yes we have brilliant days, but we also have terrible days when our brains don’t seem to work.

Enjoy what you can do, and treat each day as a new start and a new challenge

When I was diagnosed my consultant gave me some advice, which I still try to remember and stick to.


My diagnosis

First diagnosis  
After the diagnosis of Dementia many like 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.

After my first diagnosis of early onset Lewy Body Dementia, I was left drained and shocked, as I had only ever heard of Senile Dementia,  

We then had to move home because I had lost my job etc, through the diagnosis, but by the time I saw the next consultant we found out that the first hospital had lost all of my notes.  However the first hospital had not been helpful according to my wife and gave us no advice or support

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.  We had two long sessions with her and in many ways she prepared me for the future

In her words:- you may struggle to do something one day , something 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.  If after 4-5 goes it still fails, then leave well alone, as there was a danger in getting quite depressed at not being able to do other 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

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.

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

No two people with any form of dementia are the same; we are all individuals with individual problems and symptoms

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.

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 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 as lucky as me.

This consultant also told me to write my life story, something that I did not understand at first, but when she explained it, it all made sense.

So much of my early life was unknown by my wife let alone my children or grandchildren, so it’s there for them to read later on, it also helps carers understand more about us if we ever need to go into a care home.

I was also told to keep a diary, because I was struggling with very graphic nightmares and dreams at night. The idea was that as these were still fresh in my mind the next day, I was to try writing them down so that it may help the psychologist when I met her later.

This all helps and it’s up to the person with the illness, to decide whether they are going to fight the illness and try to enjoy themselves while they can or just sit back and give in to the inevitable 

 Like many who have this illness, I have lost control of my writing, spelling, and grammar, something I was always proud of when I was working. I used to be in charge of two large Budgets at work, now my arithmetic is none existent on some days.

I was also responsible for all of the electrical work at work, and rewired the College Chapel, but now I cannot fit a 13 amp plug top

That is all in the past, most of which I simply cannot even remember, but I still keep going, because I simply don’t wish to stop and give in.

As long as people understand these problems, then we have no worries, if they cannot accept them then they really don’t understand this illness at all

I guess that like many people who have dementia, we have always remained active and I suppose we always will do, as we are fighters
 
So to answer the Question from the meeting

So is it possible to live well with dementia?

I think if you are positive, it is possible, but you have to accept the diagnosis and the changes, after that anything is possible
But remember that in the UK alone, there are many dementia organisations, like the Alzheimer's Society, Lewy Body Dementia Society, Innovations in Dementia etc, all there to help you, so please us them and get the support you need.
There are many more groups, but I simply do not remember them, however, one day I will make a list of them all to keep on the blog  
  

 

Technolgy and dementia

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