Smile

I have been feeling a touch guilty about venting in yesterday's post.  But I guess that is the way life goes... some days you are up; some days not so much.

I was invited to dad's care home this evening for an "evening of entertainment".  Well, easy on the "evening"... some were nodding off fifteen minutes in!  In all seriousness... it was lovely to hear the choir sing around the piano  (and now I am using the word 'lovely'... so perhaps I should be selecting a bed as well?).  I got a teeny bit teary eyed when they sang "I Still Call Australia Home".  That song has always tugged at my heart strings, but never has it been so poignant as it is now.

Now, maybe I have been living under a rock... no, I know I have been!  I have never heard the song, Smile.  In a Google search, I see it has been covered by everyone from Nat King Cole to Michael Jackson.  They sang the song within a medley this evening and in listening to the lyrics, I thought the song quite timely.  In second thought, I do believe I have heard the song before, but I've never really listened to it.  So here are the lyrics... and here is me signing off with a smile ;)

Smile

Smile, though your heart is aching
Smile, even though it's breaking
When there are clouds in the sky, you'll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You'll find that life is still worthwhile

Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That's the time you must keep on trying
Smile, what's the use of crying
You'll find that life is still worthwhile, if you just smile

That's the time you must keep on trying
Smile, what's the use of crying
You'll find that life is still worthwhile
If you just smile

Life with Parkinson's Disease

Maybe I am the one with the problem.  Maybe other women could do this in their sleep.  Raise kids or run a successful business or promote world peace and take care of their sick father in their spare time.  I am having no such luck.  This past week; it feels like the bottom has blown out of the paper bag. As in... I was holding it together, but now the bottom has exploded and stuff has shot out everywhere.
The advice has always been, a day at a time... my poor brain is in such a state that that little gem is no longer helping.   I hardly know where to start, so I will try bullet points:

- Dad is now in a wheelchair, which obviously means he has to be pushed everywhere. The dementia has effected his brain in that his feet don't remain on the foot pegs,  or his arms drop over onto the wheels. So when pushing him along, every 10 steps or so, the chair will slow down. Invariably I've just dragged his foot 5 steps, or his arm has been dragging on a wheel. I have to stop, adjust and keep going again. Which is not as easy said as done. With Parkinson 's, you can tell the foot to move onto the foot rest, but the brain doesn't respond.  I have to end up adjusting him manually. Heading to the doctor's office one day, he dropped his feet inside a packed elevator. When the carriage reached our floor, both feet were off the foot rest and I could not move the chair.  I was struggling to get his feet back on the foot rests while trying to get him off the elevator as the doors were closing on us. I am sure there is something I could add to the foot rest so his feet don't drop off... add it to the list below.

- Patients in care homes receive general doctor's visits in house, but have to go to the specialist office for specialized care. Urologist, neurologist, optometrist etc. Often these offices have machines that you can't transport to a nursing home, so you have to transport the patient to the doctor's office. Which means organizing a wheelchair taxi and finding someone to accompany the patient. Since dad cannot communicate for himself, I'm the one to accompany him and speak on his behalf.  Since he has late-stage Parkinson's disease, the trips to the neurologist are plenty. Dad's glasses have gone missing, but I also know it has been a year since his last appointment, so there will be another visit to the optometrist. Just have to find one. Add that to the list.

- With the move, all the legal documents have to be revised to comply with Australian law. I found out last week that dad needs to be found in a sound state of mind to be able to sign these documents. Which means a referral to a neuro-pschycologist. Another doctor visit. Some institutions here have accepted the Canadian Power of Attorney, some do not. I need the POA to act on his behalf. I had filled out paperwork for Aged Care a few weeks back and filled in the section that appointed me the nominee of his behalf, with supporting documentation. In speaking to the Aged Care department the other day regarding another matter (another story), they told me I needed to be appointed as the nominee and directed me to the form on their website. More paperwork. I fear they are going to want the Australian Power of Attorney. Which I don't yet have as I need to visit the neuro-pcyscologist blah blah blah. Add it to the list.

- Also added to the list is filing for Canadian 2011 taxes, which is now complicated with resident and non-resident taxes. And now I have to find an accountant here to assist me with resident and non-resident filing. Add it to the list.

It is not hard to see from the above as to why I am feeling bogged down and not making any progress.  The list above details dad's care only. Then there is my whole mess to detail. I do not have a doctor/dentist/accountant of my own as there has not been time to sort out that. I have to find work immediately. I was looking for part-time office work so I can bring in a much needed income while managing dad's needs. I have been so busy with dad's affairs over the past week that I have barely been able to manage my own job search.  Seems to be everyone wants a part-time office job to tie themselves over. A job, a house, a car seems like a daydream these days.

There is more I could add, but I am bored! I should press on and be productive.  Another day of errands... another office to visit because their website does not work and I cannot get through on the phone.  The joys!

Follow Up

By no means do I profess to be an expert on health care. I've heard the praise and criticism for the medical systems in both Canada and Australia.  So far, I have very happy with the care dad has received in Australia. Dad has been to see the neurologist at the private hospital in Sydney; part which is covered and the other part he has to pay for.  In my opinion, dad is receiving more attention with his Parkinson's disease.  There are options which are overseen by the neurologist; which in Canada was dealt with by two departments.  There was no cohesion, plus it required double the visits.  Maybe it was just the situation at the time.  At any rate, the neurologist is on top of things now and we are seeing tiny results now.
About ten years ago, dad was working on a large home project out on the flats in Delta when he first noticed he was having a problem with saliva and swallowing. He knew something was wrong, but was unaware at the time that this was one of the first signs of Parkinson's. For years he carried around a handkerchief to deal with the issue; chewing gum sometimes helped as well. Looking back, the drooling became very bad, though I cannot quite remember when. When we were in the neurologist office the first time in Sydney, he offered Botox injections for the drooling. We had never heard of it before... and to find out there could be respite from this annoying Parkinson's side effect, well... it felt like a gift!

We had a follow up appointment to the Exelon patch last week, so dad was given the Botox injections in his jaw at that time. It takes about two days to 'take' and there should be some noticeable change in a week. It lasts approx 4 months. I was tempted to ask for a shot for the worry lines between my brows. Next time.
The Exelon patch seems to be giving some assistance in the memory department. The doctor asked about memory and I said dad seemed to be retaining a bit more information. He asked about the hallucinations... was dad still 'building things'? (See... it helps to chatter on about random things, as I am prone to do.) I paused a minute before realizing that dad hasn't been as wonky as he could be. Dad piped up and said, 'The hallucinations haven't been as bad, that's for sure.' (Huh? There he goes... following along when I least expect it!) Turns out that the reduced hallucinations are a good sign that the patch is working... and that it does help with the hallucinating... another pleasant result.

Post doctor visit... we walked down the street to have coffee and lunch at a cafe in Darlinghurst. Dad had a tissue in his hand and had offhandedly asked me to throw it out. I didn't really pay attention, thinking he still needed it.  As we walked past a garbage can, he fired the tissue into the side opening! I about fell over laughing! He had sat there in his chair, scouting out a trash can. Seeing one, he let go with his garbage! Bulls eye! He never ceases to surprise me!!

Sydney Opera House

On the stairs at the Opera House

From Tuesday, March 27

When I went to get dad for our excursion to the Opera House, he commented on what a gorgeous day it was. 'Would be a nice day to go on the ferry...' Oh dear, what have we done!?!?  I told him we would be doing something just as nice... we were going to the Opera House for lunch and we could watch the boats going in and out of Circular Quay from there.

(At the Opera house, he wanted to take a ferry back. When I told him that it would depend on the tides, he told me that would be easy enough to check.  Haha... he obviously remembered L checking his iPhone on Saturday for the tide charts.  Can't always pull the wool over dad's eyes apparently!)

Our taxi vouchers arrived last week, which means reduced fare with wheelchair taxis.  It was a breeze to call them up and hitch a ride directly to the Opera House steps.  We were treated like royalty... security breezed us up as close as we could get.  (Indeed, as we were leaving, some tourists were staring in the window, laughing and waving.  Needless to say, I bought into the joke and laughed and waved back, though for some reason, they didn't want my autograph!?)  Handicap accessibility at the Opera House is great.  The lift takes you to the lower mezzanine and the main foyer above... where you can pop out onto the upper stairs and study the architecture of this gorgeous place.  The wheelchair maneuvered around without any issues.  It's a stunning building... I'm happy just to stand around and gape... along with the thousand other tourists!

Lunch was at the Opera Kitchen... an upmarket food court of sorts.  I was ready to dive into dumplings and spring rolls from Miss Chu, thinking dad would like the same as he has been asking for Chinese food.  There's no telling him what he's going to eat... so when I asked him what he wanted, he said, "I've not had a meat pie yet."  Hahaha... how does he remember that!?  Fortunately, Becasse is in the lineup at the Opera Kitchen, so I was able to fulfill his wish!  Silly me forgot to order chips with his meat pie... duh... have I not learned anything!?  I popped up to order him some chips at the counter and came back to find him carefully cutting the top off his meat pie in order to pile on the ketchup (tomato sauce) under the upper crust.  Nothing wrong with his memory!  I laughed at him and he gave me a slight smile back.  What a character!

All in all, a successful visit to the Opera House.  Very thankful for concessions made for handicap accessibilty.  As limited as dad is in his movements, it's nice to be able to get out and do some sightseeing.

PS... Please excuse poor quality iPhone pic... it was the best pic of dad that I had.  I didn't want to cart around my heavy SLR while pushing a wheelchair!

For more pics on the Opera Kitchen, click here, or here...

Sparkly Sydney Saturday

Sitting on the dock of Rose Bay

Circular Quay

Sydney Harbour Bridge and Opera House

Dad's view on the ferry ride out of Circular Quay

"Do you want to take dad for a walk down to Rose Bay?"  Is the first thing my brother said to me Saturday morning.
"I suppose I could," I responded, one eye open.
It was a sparkly Sydney Saturday, the sun twinkling on the water as we whizzed over to grab dad from the care home.  We walked down Newcastle Street, then down to New South Head Road to pick up coffees and hot chocolate at the cafe in the park.  Sitting on the edge of Rose Bay, we watched the seaplanes take off and land, and the numerous boats enjoying the stunning day on the harbour. 

The Rose Bay ferry came into view, L looked and me and said, "We should take dad on the ferry!  It looks like the tide is up... we're here now."  We had been wanting to take him on the ferry... but had concerns about wheelchair access in low tide.  A quick search of the tide charts on the phone indicated the tide was up for a while.  We watched the ferry a few moments longer, looked at each other and said, "Let's do it."  So we trotted off to the ferry in time to watch in dock, and on we jumped.  Off we went to Double Bay.  I looked at Loren and said, "Oh no... dad's Sinemet... it's due in an hour."  Yep... hard to be spontaneous with a Parkinson's patient.  But then I remembered... I still had a pill in my purse from back in BC days... cuz you never know when you are going to need some Sinemet.  Quick call to Wentworth Manor to let them know the revised plan and that the pill would be taken on time, and we were all good!

From Double Bay the ferry took us to Circular Quay.  We considered getting out at Circular Quay and heading over to the Opera House... but didn't want to risk the tide and having to drag dad and the wheelchair up the stairs at the dock in low tide.  So we sat at Wharf 4 and watched the boats in the harbour.  I said to L that I thought dad could sit there all day watching them.

We just did a reverse harbour cruise then... back to Double Bay and then Rose Bay, and out for yummy Portuguese chicken for lunch.  All is well in the dad camp for now!

Visiting Dad

Many people have made the trek to visit dad in Rose Bay... and we would like to thank everyone for their efforts.  While dad may not be able to to communicate very well, he enjoys the company.  One day when a few of us were there and about to leave, he didn't want us to go and wanted to take us out for Chinese food.  So cute!  He has had a hankering for Chinese food since he moved in there!  We are waiting on his taxi vouchers for a reduced fare, and then we can explore a bit more.

With regards to communicating with dad; even I am having a hard time understanding what he is trying to say, let alone anyone who is not familiar with his speech.  For me I have found it helpful to take something with me to do, such as knitting or reading.   Dad has Parkinson's with dementia, not Alzheimer's. Generally he remembers who people are. It is his short term memory he struggles with... such as remembering what the conversation on hand is, or who visited him that day. His long term memory is pretty good... and he can recall quite a few things.  (My brother was stunned to find out that dad remembered the street address of a house he built in Sydney back in the early 70s.  L did a Google street view search and found the house... pretty much the same as dad built it, with a simple change to some railings and the front door!)

Having said that, on our visit to the neurologist, he prescribed an Exelon patch for dad to wear.  Exelon is used to treat Alzheimer's patients with mild to moderate dementia, and is also used to treat Parkinson's patients with dementia.  The patch is worn for 24 hours and releases medication to help with cognition: memory, understanding, reasoning and communication.  We had originally spoken about the patch with the elder health doctor in Canada, but since the patch needed to be applied daily at the same time each day, with everything else going on, it was too much too coordinate at that time.  The patch looks just like one of those little round, beige bandages.  Amazing to think that it releases medication into the body to aid with brain function.  We have a six week follow up with the neurologist and he will do more testing to see how dad is responding to the medication.

The seasons are shifting to autumn here.  The sun is definitely lower in the sky, but we've been having some gorgeous weather.  Making up for the wettest summer in 50 years!!  We have been able to sit out in the back garden with dad and soak up the beautiful sunshine.

Pontiac Parisienne.... But I Digress...

Thumping and bumping down New South Head Road today... dad strapped into the back of the wheelchair taxi... brought back memories of childhood.  From childhood to graduation, my parents owned a flesh colored Pontiac Parisienne.  The car couldn't have been further influenced by France if it tried!  If it was a Parisienne... then I was a Nobel prize winner or ?!?!?  ... (Sidenote: dad used to tell the story of me bailing out the door halfway down the block when he used to drive me to high school.  I was so embarrassed about being driven in a car the same color as human flesh and as long as a boat that I used to jump ship a mile out at sea!)  He would pick up visitors at the airport in this car, and always, they would marvel.  "Wow Norm, this car drives so smooth."  And dad, proud as punch, would always smile quietly to himself.  How could it not drive smooth... it was a boat!

These were the thoughts running through my head as we bumped down the road to the doctor's office towards St Vincent's hopsital.  (All those years of dad picking out cars that had a smooth ride.  And indeed... when he rode in my Honda Civic's... he would always complain of the lack of suspension... "Was that a speed bump?  Oh, we only crossed over the painted line.")  Here dad had been so particular about a vehicle's performance, and now he was relegated to the rather bumpy backseat of a wheelchair taxi.

We went to dad's first neurologist consult here in Sydney.  I was very impressed with how thorough the doctor was.  And realized how much dad's Parkinson's has diminished him in the past 6 months... from living independently with assistance, to full care.  The doctor was asking questions about certain functions... I commented that we were dealing with memory loss when urology complications took over.  We were dealing with urology complications when a fall and a long hospital stay.  At which time we moved overseas, then another fall occurred.  Then we had to get him settled into full care.  Whew!  Is it any wonder we've come out the other end, worse for wear!  Poor dad.  (Poor me... haha!)  Seems like there is a course of events to take place... with a follow up visit in another 6 weeks.  More taxi rides.  I don't mind.  It sure beats the waves of panic and nausea I had in Canada prior to dad's neurolgy visits, where his life had yet to be sorted out and I felt the weight of responsiblity and the unknown on my shoulders.

Post doctor visit, we lunched at the hospital, then had coffee down the road.  Dad handled both quite well, slipping in and out of cognition, which is normal these days. He seemed to understand where he was... with me updating him every five minutes as to the area we were passing through... it wouldn't be hard!  Since the wheelchair taxi is so handy and helpful, I started to foresee future outings.  Like his daughter following him, dad has always had a love for the Sydney Opera House.   Coffee at the Opera Bar coming up!