This blog post was written for the purpose of a project called “My Star To Remember” … An initiative of Alzheimers Australia’s Memory Walk or Jog.
Memory Walk & Jog is a fun run and walk to raise awareness and funds to support people and their families living with dementia. Funds raised go to Alzheimer’s Australia. Find out more at www.memorywalk.com.au
This is my contribution to this project. THANKYOU Alzheimers Australia ❤️
What is your most treasured memory of your star?
The incredible conversations we’d have whilst walking along the beach! My parents always prioritised the beach and even though there were many years where they lived many miles from the coast we would often find ourselves listening to the sound of the waves whilst on camping holidays in our trusty Olympic caravan. There were so many quality conversations whilst we walked along the beach yet the beautiful thing is now that she’s not able to do so – my dad has replaced her presence. We now talk (and reminisce) about mum whilst walking on the sand. My mum and dad eventually built their dream home just a stones throw from the ocean so it’s no surprise that my dad has now replaced my mum whilst we stroll the low tide mark.
What is it about your star that makes them special or unique to you?
1) Her honesty. I could always guarantee that my mum would tell me how it was! Of course there were times where her honesty would cause the occasional disagreement but at the end of the day I knew that she had my best interests at heart! She wasn’t afraid to upset me if it meant that I would be a better person for it. As a result I tend to befriend people with similar qualities!!
2) Her strength! She was (and still is) as stoic as you’ll ever see in a person. She’s survived dementia coming onto ten years now and still isn’t willing to give up just yet. She will when she’s ready.
What do you wish you could do or say to them now that aren’t able to because of their condition?
This may seem strange but I don’t think I need to say anything. Since she’s been in an aged care facility (6 yrs) I’ve visited every week. She knows how I feel about her (I think). She’s still with us so it’s up to me to make sure that I have no regrets. She was there with me during those times where you wanted your mum around. She met my husband and was around when my children were born. She met all the important people in my life and I feel lucky that they got to meet her before her illness took hold!
I still tell her I love her at every visit and give her a kiss on her forehead!
What were the first signs of dementia that you noticed in that person? How have they changed and how does that make you feel?
I ended up marrying a guy that loved pavlova so thought I better learn how to make one from scratch! My baking prowess (at that time) was limited to Apple pies and cheesecakes so I set about asking my mum to teach me how to make a pav! We proceeded to get out the Kenwood mixmaster and recipe only to find out that mum had forgotten how to make it. She struggled in reading the recipe (even though she’d managed to make it a trillion times before). She pretended not to worry about it but it turned out that I was the one who was teaching her. I still have never mastered the pavlova but don’t think I’ll ever be able to make one as good as hers.
What do you think your star would be doing now if it wasn’t for their condition?
That’s easy! She’d be travelling the world and climbing mountains with my dad. Their last adventure before being struck down with dementia was Mont Blanc in France! Their adventures were cut short when my dad was forced to admit mum to an aged care facility when she was just 69. My dad has been by her side ever since.
This photo takes pride of place in my mums room at the Bayside at Byron nursing home.
What type of dementia does your star have and when did they get it?
Mum has Fronto Temporal dementia which was diagnosed when she was 64 (or thereabouts)! She was also diagnosed with Primary Progressive Aphasia (PPS) which was a double dose of frustratation because her language capabilities became increasingly impaired causing her to become quite angry and violent at times. Combine this with Fronto Temporal dementia (which affects personality) and my mum became a person that was not her true self! She’s now 74 and is still surviving this disease. She hasn’t been able to communicate with us for about 5 years. That’s tough but she still smiles, chuckles and holds our hand. She’s still with us so I will make sure I’m a regular presence in her life until she’s no longer with us.
To read more about my journey with dementia please go to www.nobrainr.org