Dementia in the acute setting

shackled patientSadly, I have yet another horror story of our acute sector in Australia, and their mistreatment of people with dementia. Obviously I had hoped the experiences I wrote of three years ago had not continued, and that care for this very marginalised group might have improved.

But alas, it seems not. When I wrote about this appalling treatment three years ago, I did not name and shame. I am not being that “restrained” this time…

A friend’s father who had Alzheimer’s Disease died in September as an inpatient of one of our main public hospitals, the Royal Adelaide Hospital, and sadly spent the last two weeks of his life starving himself to death, simply because the staff refused to allow him to go home to die, and had talked his family into leaving him into hospital, using the “but it is in the best interests of your father/husband” standard cop-out…

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The importance of giving people living with dementia a voice

It is very important to allow people with dementia to speak up, in any way possible, so that they never feel left out of any situation.

However it is more important than ever to encourage them to speak up after the diagnosis, so that they both help themselves and help others, to accept that anything is possible after a diagnosis like dementia, as a well-known Newcastle Professor in Dementia once said, we either use it or lose it, and I knew from then on which way I was going to go.

People with this illness do have a very important role to play in life, as they are the ones who know what it is like to live with this illness, and if we don’t listen to them we will never have all of the answers.

There are so many variations of this illness, so in many ways we are all unique, and on our own unique journey.

Before this illness started I could never have spoken out, because the mere thought of speaking in a University Committee used to terrified me, yet these days I am not really bothered.

So if I can do this, then others should be encouraged and empowered to follow and do the same, because it’s by doing this that others realise that the diagnosis, is not the end of life.

It may be then end of a life as we knew it, but like many other people I have taken on a new life, talking about my illness, and if I can do it so can others with a bit of support and help. 

This could be done different ways, either by speaking in groups, campaigning and raising awareness, talking to the press, or it could be speaking out to Members of Parliament.

There is a lot of scope, we just need to encourage them to come forward and then let them do there best.  If I can do it so can others.

The importance of giving people living with dementia a voice

 

It is very important to allow people with dementia to speak up, in any way possible, so that they never feel left out of any situation.

However it is more important than ever to encourage them to speak up after the diagnosis, so that they both help themselves and help others, to accept that anything is possible after a diagnosis like dementia, as a well-known Newcastle Professor in Dementia once said, we either use it or lose it, and I knew from then on which way I was going to go.

People with this illness do have a very important role to play in life, as they are the ones who know what it is like to live with this illness, and if we don’t listen to them we will never have all of the answers.

There are so many variations of this illness, so in many ways we are all unique, and on our own unique journey.

Before this illness started I could never have spoken out, because the mere thought of speaking in a University Committee used to terrified me, yet these days I am not really bothered.

So if I can do this, then others should be encouraged and empowered to follow and do the same, because it’s by doing this that others realise that the diagnosis, is not the end of life.

It may be then end of a life as we knew it, but like many other people I have taken on a new life, talking about my illness, and if I can do it so can others with a bit of support and help. 

This could be done different ways, either by speaking in groups, campaigning and raising awareness, talking to the press, or it could be speaking out to Members of Parliament.

There is a lot of scope, we just need to encourage them to come forward and then let them do there best.  If I can do it so can others.

Old Timers and Spelling

Some time ago my daughter Claire, tried to explain to our wonderful

Grandchildren that I had Lewy Body Dementia, and thought the easiest way was to say that I had old timers illness, which sounded lovely. I found it hard when the children would treat me with kid gloves at times,but it was Claire’s way of protecting me at times.

Last Monday we travelled down to London where we stayed over in a hotel for a night, before going to a meeting about Dementia. After this we headed off to our daughters in Farnborough in Hampshire where we stayed till Saturday.

During the week we walked to school with one Grandchild or the other as both girls are in different schools, but it was so nice when they hang on to your hand and talk to you and confess that at times it was very hard to take as I was starting to get emotional.

On the Thursday Claire had to take one daughter straight into town from school, to get her feet measured, and as things were going to be tight, and my wife was needed to keep an eye on the grandson who is the youngest and gets into everything.

So she asked if I would be alright going up to the school to pick up the youngest from the primary school which is about 1 1/2 miles away.

I have walked this route on may occasions, and enjoy the walk, as it is relaxing, so I agreed to do it.

Having got to the school, I waited as everyone came out, and the teacher looked at me and asked who I was waiting for, and I explained.

I had seen my grand daughter wandering round the classroom, but she was in her own little world, and perhaps because she had not seen her mum she did not come out.

She asked where everyone was and I explained and said that we were walking home. On the way I asked what she had been doing at school and whether she had enjoyed herself. She was quiet at first, but then started talking about spellings, and how she sometimes gets things wrong or spelt the wrong way, as some words sound differently to the way they are spelt.

I said that I loved spelling when I was at school, but these days I can not always remember how words are spelt( and without spell check I would not be doing this, although sometimes spell check can not fathom out the words I am trying to spell) so I am stuck.

She looked up at me and said. But Grampy you have an excuse as you have old timers?

I confess that I was taken back by this and felt very tearful as this little girl of five had remembered this, and I felt very humbled that she was being so thoughtful in what she said, and for someone 5 year old that takes some imagination.

We had a long talk going home, and after she had changed out of her school uniform, she came back down stairs and started talking again, sounding so old for her age. As Claire has said on many occasion’s she is 5 year old, yet there are times she sounds more like 35.

I had trouble trying to explain this to my wife and Claire, because I was still close to tears, the effect had been something I had never expected, as it was so spontaneous.

So it proves that children can understand more about this illness that we accept, and possible think more about it than adults.