Holiday-Lag

I am home after five days in Brisbane, the sunshine state certainly put on a good show for us weather wise living up to the old saying “Queensland is beautiful one day, perfect the next!”

Bridge to the city

So my eldest son (Mr 14), my Dad and I flew up last Thursday to visit my brother, his fiancé and their exceptionally cute two year old son for five days. It was Mr 14's first plane trip and he loved it! No travel sickness for anyone, I think I have finally found a travel pill that works and we also had an incredibly smooth flight which helps. 

 My brother is lucky enough to live within walking distance of pituresque Southbank and the bustling Brisbane City Centre, I had never really spent time in Brisbane before and was surprised at just how beautiful and green it was, there are parklands, play grounds and manicured public gardens everywhere and of course it's warm so all the trees have leaves in winter which was a pleasant change from my part of the country!  

Roma Street Gardens

So my holiday was fantastic but today I have been hit with wave of unexpected depression. Holiday-lag perhaps. I think that there are many contributing factors, I returned home to find out that we had completely run out of water and the water truck man I had organized didn't turn up then when I rang him he said he couldn't come out until tomorrow and he had increased his price by $80. We told him not to worry about it and now we have to figure something else out so that we can shower again as it doesn't look like it's going to rain any time soon.

View from the Mt Coot-tha Lookout

I am really tired, I have actually slept more in the last week than I usually do but for some reason I am exhausted. My routine is out of whack, I haven't been for a run in a week which is stressing me out, I think spending that time with my brother's family made me realize how much I miss seeing them and overwhelmingly I am really noticing the slow decline in Dad. 

My regular readers would know that my Dad was diagnosed with Alzheimer’s earlier this year, it's sad to see Dad's memories fading, watching him have fun with my young nephew and knowing that he soon won't remember it so it was really special to be able to get lots of photographs and some video footage of the trip that we can show him later on.

One evening after Dad turned in for the night, my brother, sister in law and I watched a 4 corners episode about Alzheimer's and Dementia. It followed the stories of a few different people as their condition progressed and it was sobering to say the least, there is such a long road to go down, it's scary and so, so sad.

When we flew back to Canberra Mr14 and I spent the night at Dad's place, Mum is still away in Canada with her friend and he is leaving for his bucket list trip to Darwin today that Mum booked for him seemingly out of some sort of miss-placed guilt about going overseas without him. While his condition isn't too bad yet and the new medication he is on is making a difference, I am quite worried about him embarking on this trip alone. 

I really want him to have the experience - he's been talking about going since I was about 5yrs old, but I wish Mum was going with him and I am annoyed at her for being so unconcerned about it all.

 He is mostly fine as long as he sticks to his routine and everything goes exactly as he expects it to like at home, but he gets quite muddled & distressed when something changes and frankly he has been back home from Brisbane 24 hours and was already tired, he then he had to leave at 4.30am get a taxi to the airport catch a plane to Sydney, then transfer all his baggage and catch a new plane in a different area to Darwin and then find the tour group. Coming home is even more complicated- its a lot of steps for him at the best of times and I really hope there are no gate changes or delays!

Dodgy Selfie

It is an over 50's tour group and I rang them and told them about Dad's condition as my Mum had not even mentioned it when she booked him in ( I swear she's in denial). They were very grateful to have the heads up and I gave them my contact details in case of any issues. I have given him dot point, step by step instructions and booked his taxi for him, I went through his phone and updated his contacts information and filled out his medical ID with all of his medications, current doses etc. He can sort them into their little boxes but if you ask him out of context what he takes, he can't tell you.

Sigh... His plane should be landing in Darwin in about five minutes so I will send him a text message to ask if he had a good flight (and check that he got there ok!).

Have you had experience with Dementia /Alzheimer's in a loved one?
Do you get holiday-lag when you come home to reality?

Forget me not

“Katie-belle, if I ever end up like that I want you to promise you will shoot me.” Dad shook his head sadly at the television as the news reporter spoke, the documentary on Dementia was sad and confronting. “Yes, I promise” I replied meaning every word, I understood exactly how he felt. I was around eleven, I had just read “Flowers for Algenon” and my grandmother had recently passed away after years spent in the slow, cruel decline of Alzheimers Disease.

Grandma, Mum’s mum had lived in Mum’s native England. I’d only met her once when we went over to visit when I was six years old. I didn’t remember her very well, she lived in a tiny room in an aged care home didn’t know who I was and kept calling me by my cousin’s name. She was unable to have much of a conversation and only just sometimes recognised my mother, all of her memories confined to a place in her past that we were not privy to. 

I do remember that she smiled a lot though, she was physically fairly healthy and seemed quite happy existing within her own little world.  I had nothing to compare her with, I had never known her before she had become unwell but for my Mum, it was painfully obvious that while she was still physically present, the mother she had known was long gone. 

Over the years I have watched more grandparents of friends suffer the undignified loss of their minds and friends that work in aged care have shared heartbreaking stories. The memory lapses from disassociation and medication side effects that affect me have at times sent chills through my spine when I remember the fact that Alzheimers has a genetic link. “I don’t want to ever be that person, just shoot me” I say to my husband, mimicking my father’s words from all those years ago.

Now my Mum has to watch her life change as day by day the man she loves more than anything in the world is slowly taken away from her. Dad’s memory has been deteriorating for a long time now, a medical scientist by trade and plant enthusiast, he used to know the Latin and common names for everything. I remember having a conversation with my sister when I was in hospital nearly two years ago about how he was struggling with word finding and repeating himself a lot. She and my brother live interstate and don’t get to see him very often.

Dad and me at an open garden a few years ago

Over the last few months he has been steadily and more obviously declining. Mum and I were able to convince him to see a different doctor as when he had mentioned our concerns to his regular GP more than 12 months ago he had just been told it was “a normal part of aging’ and didn’t do any tests or anything. 

Mum went with him to the new doctor, and this doctor listened to the concerns and agreed with them, she administered some basic neurological tests and cognitive tests and then referred him on to a Geriatrician who in turn did more tests and ordered CT scans. 

We were still waiting for the follow up appointment for these tests but over the weekend he had a funny turn and woke up feeling quite out of sorts he asked Mum to take him to Emergency where he was given fluids for dehydration and officially diagnosed with dementia.

My mum was given a speech by a doctor with the people skills of Monty Burns about how this was basically the beginning of the end. His rate of decline would likely increase from now, he would no longer make new memories and would slowly move into a world from the past. Everything in the home would need to stay the same for familiarity except for the fortune she will have to spend on safety features in bathrooms etc.

She could no longer leave him by himself, she would have to take over the administration of all his medications and to revise their will and have new documents drawn up, one to give her power of attorney and another for a secondary power of attorney should something happen to her.  

Mum knows all too well the long painful road ahead but the truth is at the moment he is not too bad, he has always been a creature of habit and I think his routines help keep him on track. He still needs and craves his independence and loves to travel on the bus to familiar places. I think he should be able to have that while it is still safe for him to do so. I know how awful it feels to be watched like a hawk and have your decision making skills judged even when you are capable and I don’t wish that feeling on him. 

So Dad, I’m sorry that I can’t shoot you – not even when it gets bad one day. But know that we want to be there to help you, like you always have been for us. Right now we still have opportunities to spend quality time with you and create memories, at least for ourselves if not for you.

I am going to force you to be in more photographs even though you hate it and I will make more trips in to town on weekends so that the children can spend more time with you. I know you are frustrated that you have trouble remembering their names, but they understand, we all do and names aren’t that important anyway, the important thing is we are together. They know you love them, and we love you.