If I knew then, what I know now about dementia

I really feel that it would have saved a lot of heartache, deception and torment including a prolonged life for my mother. At the time when it all started for us, we looked for information. From doctor google to having the dementia organisations out for appointments to help us navigate this confusing and often tumultuous journey. But the truth never prevailed. Was it that these staff members were limited in what they can share or the fact they that really were not educated in this field efficiently?

I wish I knew.

That there are modifiable risks like mum’s nutrition, exercise and social interaction. Sure, this would not have stopped her having the terminal illness of dementia, but it could have slowed the decline and prolonged her good years especially if we worked on this early in the illness.

I wish I knew that Dementia is a terminal illness and yes, my mum would die from the illness. Again, it wouldn’t stop it from happening, but I think if we are armed with this sort of knowledge, we then can accept how serious it is and give it the respect it deserves. If a relative is given a diagnosis of terminal cancer everyone rallies around and does what they can, but this doesn’t happen with dementia.

Having the correct forms in place. This caused the most heartache. The only form we knew about was a Power of Attorney and as my mum had no assets it was probably the most useless one of them all. At no stage did anybody gives us insight into having a Power of Guardianship in place or an Advanced Health Directive. I think the most important was the guardianship. This enables the person who takes the role on to make medical and accommodation decisions on your behalf when you reach the stage where you no longer are able to. We found out the hard way, ending up in the State Administrative Tribunal fighting for this in court. It was disgusting and ridiculous. If only someone had told us!

I wish I knew the lack of palliative care help for someone with dementia. Knowing I could have done more for my mum in the last year would have been a blessing for her.