On 11 Jan 2019, I sat with my mum, brother and a team of specialists from the Cognitive Assessment and Management Unit at the Prince Charles Hospital discussing my dad’s recent hospitalisation, it’s a day I will never forget.
Dad (aka Kelkie) was admitted to hospital for delirium in December 2018, it was worrying but we thought he would be coming home once they found and fixed the problem. After 35 days of being assessed, we were finally told that he had vascular dementia with damage to his frontal lobe which controls executive function such as problem solving, risk awareness, mood fluctuations and his parietal lobe which processes sensory information such as touch, taste and temperature, reading, mathematics). “Your dad is going to require 24 hr care and needs to go into Aged Care. And you have 10 days to find him somewhere.”
As you can imagine, it sent shockwaves through our family, Kelkie was only 74 years of age and my parents retirement plans were now thrown out the window. Also, where do you bloody start trying to find a home when you are in complete shock and disbelief?
There were many mixed emotions, the biggest being the guilt of putting him into care. Are we doing the right thing? Are we doing it too soon? He would always ask “When can I come home?” These were very tiring conversations in the beginning and often I would drive home in tears. It still bothers me to this day nearly 4 years later.
Sometimes Kelkie is great, even mum said tonight as I write this that he was really calm, they had a nice afternoon and said to the nurse “Gosh is he getting better, do I need to take him home?” In the early days, people would go and see him and say “oh there is nothing wrong with you Kelkie, why are you here?” (TIP: that’s not helpful)
People with dementia have short bursts of normality which is why you question it constantly, they still remember a lot of things from the past. We went for lunch one day and he saw someone he worked with 40 years ago, yet he can’t remember what he had for lunch if you ask him that night. But the night he mistakenly drank dishwashing liquid instead of cough medicine, confirmed for me that he was in the right place.
Through adversity there are always learnings:
* Before they deteriorate, say all the things you need to say and find out the things you want to know about their life.
* Create fond memories for you, take short videos and lots of photos.
* Research Dementia to help you understand what they are going through, how to talk to someone with Dementia and also what to expect as they progress through the stages. (check out some useful links below)
* Not everyone in your family is going to be ok with the decision of putting someone into care, please ensure you talk about this openly and not treat it like taboo.
* Make sure you have an Enduring Power of Attorney and an Advance Health Directive, fortunately we did this 3 years prior to this event and you don’t know how important this is until you need it.
* If they need to go into aged care, use an Aged Care Advocate – they provided amazing advice, found the right home that could cater for dads condition as he deteriorates (and not be moved later) they negotiated a better deal for his room, dealt with all the Centrelink forms and more importantly took the stress away.
* Don’t overshare or listen to others – I have heard “Oh I never want to be put in a home” or “I would never put my parents in a home” which is unhelpful when you are already struggling with this decision. Any normal person does not want to put their loved ones into care, but we had to make a decision on what’s the best place for dad’s care and also for mum’s health and well-being.
To end on a light note, there are always some funny moments that do make you smile at times, here is one of my favourites:
“Son, there’s something wrong with my phone, I tried to call your mother but it won’t work”.
“Oh really, show me the phone Dad”
He brings out the TV remote.
The reason I share my family story with you is because currently 487,500 Australians are living with dementia. Without a medical breakthrough this figure is projected to increase to 1,076,000 people by 2058.
This is why Fresh Networking continue to support as our charity of choice. We originally had plans to volunteer our time to assist with Memory Walk, however thanks to Covid lockdowns this hasn’t eventuated (just yet) however I am very proud to say since Feb 2020, through the generosity of members and guests who choose to make a when registering for our meetings, we have now raised $3160.
Every cent counts as these donations go either towards supporting services for people living with dementia, their families and carers or alternatively Dementia research, both very important areas and hopefully one day they find a cure.