- end stages

[Guest guest]

Hi .

You ask about end stages.

Please keep in mind that LBD is unique to every sufferer and there are no hard

and fast stages to expect. I have found that it is impossible to predict 'the

end' with accuracy. It is a 'one day at a time' scenario.

My dad died Oct 2002 in hospital here in the UK. The level of ignorance and

basic nursing 'care' was appalling. But that's another story.

He was in hospital for 3 weeks. Prior to that, his deterioration had accelerated

alarmingly - we had 6 months of prolonged, agonising suffering. Basically he was

admitted because he lost the use of his legs and could no longer bear his own

weight - it was decided hospital was the best place to monitor the changes in

medication. In fact all they did was up his Levadopa to see if the movement came

back.

It didn't. It was terrible. They had no idea what they were doing.

My dad slept much more - eventually he was virtually comatose.

He was rigid and difficult to move. He fought off all help. He became aggressive

and verbally abusive. He stopped eating. His bowels compacted. He refused all

medication. He was skeletal - obscenely thin and drawn. His mouth was covered in

a thick creamy crust and often his tongue was black. I had to force him to

drink. He never stopped with the jerky tremor. He constantly pounded with the

body jerks. He was incoherent and shouted out to past relatives - he was

terrified and confused.

In the last 3 - 4 days he was almost 24/7 sleeping. I refused a feeding tube.

His breathing was getting more shallow and he was extremely weak. Eventually his

breathing was just a whisper. He died of a pulmonary embolism - clot in the lung

brought about through dehydration and immobility.

It is heart breaking.

BUT you have time to make these days count. Hearing is the last sense to go and

I made sure my dad knew just how much I loved him.

I apologised for getting things wrong and asked him to forgive me if I had

contributed to his suffering in any way. I did what I thought was best. If only

hindsight were foresight!!

Use this time to confirm that love and affection. Hold them, stroke them, caress

them and reassure them. Talk about the great days, share music, poems, stories

..... every second counts.

Listen to your heart - you know what is precious to your loved ones and so do

those things.

Some here had 'peaceful' passing - but some here witnessed a more distressing

'end'. Sorry but there is no way to predict ....

We are here . Holding you in our thoughts and prayers.

Sally x