Who knew that Dementia came in so many forms?
Lewy Body Dementia
Sounds fairly innocuous!
You know when you hear people talking about issues, illnesses, accidents, unfortunate circumstances deaths etc but it often doesn’t resonate with you if you’ve never experienced it. You can feel sorry for the people involved but unless you’ve had a similar situation happen to you, you can never truly understand or empathise. I am writing this to trying an make people aware that Dementia is horrible, we are in the middle of it at the moment and it could happen to you or your family.
When my father was diagnosed with Parkinson’s disease seven or eight years ago, we actually felt a small bit of relief, as we thought he was suffering depression. His odd behaviour finally had a name.
For the first few years of his disease, his demeanour didn’t change very much.
Sadly, since Christmas our Dad’s health has taken a dive.
Our Dad has Dementia.
Initially, we were told he had Parkinson’s dementia. Then it was Lewy Body dementia, and even vascular dementia has been mentioned. What ever the diagnosis, our Dad and Mum’s husband of 55years, has gone.
Today he has very little, if any, cognitive ability. He is increasingly immobile, insomniac, agitated, angry, paranoid, delusional, and sees hallucinations. He thinks that his wife, our mum, and us children are strangers that are plotting against him. There is very little dignity in dementia.
He is broken.
Someone who at the very beginning of this year could still have a conversation about politics, now resides in the world of paranoia and distrust.
Dad will be 80 in October. You might say, ‘he’s had a good life, he’s an old man’, and I am sure that I’ve thought and said similar in the past. At least he’s not a child living with cancer, or a young person struck down in the prime of his life, he is old….but being old does not make you less important. The older generation have much to give. Today’s western society favours youth, beauty and perfection, not the wisdom of our elders.
This September is a global awareness month for Alzheimer’s and Dementia, hence this post. Alzheimers Australia have events all over Australia. Here is a link:
Dr Keith Wardhaugh Ph.D may be in end stages of dementia, but he was once a vital intelligent man, a Doctor of Philosophy from the ANU, an Entomologist and CSIRO Honorary Fellow passionate about scientific research and writing. His work was much of his life. He was an avid gardner and practical man. He loved the sea and camping when we were growing up. Dad loved to draw and paint, and has an amazing archive of Kodachrome slides and black-and-white photographs from scientific field trips into India, Jordan and Saudi Arabia in the 1960s. He was a strict father and at times quite grumpy, (that hasn’t changed! 🙂 ), but he was also a gentle sensitive man and quite proper. He loved to stir us kids but loathed it in return. After retirement he painted and played golf though and was always doing research and writing scientific papers.
His journey with dementia has been fast and furious, leaving us grieving on the go. As carers we struggle every day; it is relentless. It has lead to our Mum, Judith’s health being affected with accumulated stress and lack of sleep over many months, my sister Helen has suffered stress of having to go to work or asking for Carers leave when she needs to support her family and brother Iain being worried constantly about not being able to help from afar as he lives overseas. It has affected my mental health and in turn my business. 2016 hasn’t been a good year!
Dementia is a family disease. It takes a WHOLE family to care and manage the disease of ONE person. It is phone calls and messages every day, it is rearranging schedules to cope, it requires action and decisions every day, it’s dressing and personal care, it’s keeping ONE eye on him AT ALL TIMES. It is trying to stay calm and loving under adversity and the person you are doing it for is completely unaware, very ungrateful, unreasonable and uncooperative. I liken it to dealing with a stroppy toddler as you cannot reason with him. The difference between a 2 year old and an Keith/Dad is that you CANNOT console him to make him feel better….but we have each other and we are a team.
Dementia is a disease; like Cancer or Diabetes.
The prevalence of which is growing worldwide. 1:5 people over 65 have it. People joke about getting Dementia as they get older… why? It’s never a joke if you get Cancer why should getting Dementia be laughed at? It is certainly not a joke.
I wonder if Dad knew I was writing about him in such a public way, whether he’d be annoyed. I think he’d probably be furious. I have worried about posting this and the lack of consent but then I think if the roles were to be reversed, if Mum or one of us his kids were ill, what would he do? He’d use his skills of research and writing to gain information from anyone he knew could help. I hope this post brings many ‘aha, I can relate to that’ moments for other families suffering the same. This is the reason for my very public post about our family. It’s NOT to gain sympathy. We do NOT want sympathy. We cry when get get it and that’s not a good look! Believe me! It’s to help any other family who are experiencing a similar fate. To share, a trouble shared is a trouble halved….or at least a little bit
So if you have someone in your life who has been diagnosed with dementia,
we know what you’re going through
and we are so sorry for your loss.