Happy New Year!

Thought I had better get in one more post before the year ends!  Have some time before heading down to Rose Bay to watch the Sydney fireworks, so here is one last post.

Dad is hanging in there.  We have noticed he has been quieter since his hospital visit a couple of months back.  Then again, some days are better than others.  He has been in bed for a few days, and when I visited him yesterday, he looked like old dad, and was quite coherent.  Today when I visited, I couldn't understand a word he was saying and he was a bit agitated.  Hmmm... not sure that I am writing anything new!

Stopping to smell the roses... out the front of dad's place.

We have had gorgeous summer weather here, and last week I took dad for an evening stroll to check out the neighbour's gardens.  I have vague memories of summer evening walks around the neighbourhood, and it was nice to relive some pleasant memories.  We stopped to listen to the birds singing... in Canada, dad would reminisce about Australian birds... very enjoyable to listen to them in real life.  With the struggles and stresses that go along with Parkinson's, we have to make a point to revisit the simple joys in life.

With that, I would like to thank everyone for their encouraging emails and thoughts extended this year; it is much appreciated.  Wishing you all a Happy New Year and all the best for 2014.  - Donna-

Briefly...

I was late to visit dad yesterday... I like to visit him at dinnertime (5pm!) or earlier when he is alert.  It always feels much later, walking into the care home.  Walking in at 5.40 felt like 10pm!  Dad was alert, and taking it all in.  Maybe I say this all the time, but for the first time in a while, I really felt dad there.  It's hard to explain... but I was able to separate his frail body and his spirit and really felt him taking it all in, without the dementia haze.  Even though he couldn't talk to me, I talked to him like it was any old day.  It was such a good feeling to know that he was clear, and that he understood me.  Now that I have some more time, I am determined to get him out more just for a change of scenery.  I said as much to one of his nurses, and he commented that he must be a little bit bored in there.  So maybe I can do some blog posts of Adventures with Dad next!

Struggling to Communicate

Thoughts from 4am few days ago...

Life is a funny thing... indeed, I heard it described the other day as a series of obstacles you have to overcome.

We are all programmed to be positive in life. What happens when the situation you're in isn't very positive? For the rest of the world rushing around you, carrying on with their own set of obstacles, they don't want to hear about your own issues. You put on a smile and say everything is ok. Maybe you want to believe that yourself. Tired and frustrated with the situation.

We are struggling to understand dad these days. When words do come through, I can see he has not lost his sense of humour. Or his intelligence. Both are still evident, though it's getting so hard to comprehend him. He ends up frustrated and rolling his eyes and I feel like weeping.

This link came up in my Twitter feed the other day, and it was helpful in explaining how Parkinson's steals the voice.

Roller Coaster

A bit of a crazy week this one... or rather, the past few days.  Dad had to go in to hospital the other night due to a fever.  They called to let me know at 9.30 in the evening.  I dashed to dad's place to ride with him to the hospital; to reassure him and explain what was going on.  He had no idea!  One minute he was eating dinner, the next he was strapped into a stretcher and riding off to the emergency room.

Call me a drama queen, call me paranoid.  I just find it easier to go with dad to the hospital so things go smoothly.  Once he is on his back, he has a hard time speaking.  If he is at all confused and shocked, he cannot even make a noise.  I have to be there to communicate for him, and answer all sorts of personal and medical questions.  Questions such as... "Is your dad always like this or does he respond?"  I have seen him enough times like that to know it is normal for the situation.  I told them that he was responding to me, and they had a hard time believing that!  At one point, he had fallen asleep.  When he opened his eyes, I watched him looking around, taking it all in.  I knew then that he may not be feeling well, but he was still in there somewhere! I had to remember that they only see dad in the situation, they don't know what he's like most of the time.

Poor thing... he was asking me what was going on.  I had to tell him several times that he had a fever due to infection and they needed to give him antibiotics intravenously.  It's also been quite warm here, so he was a bit dehydrated.  I left the hospital that Wednesday evening with that familiar feeling of trepidation.  The doctor had reassured me that dad would be well taken care of.  I was not worried about his care.  (I have been so thankful for the prompt, thorough care we have received at the emergency department here.)  Still, I am aware of the complications of Parkinson's, and one never knows what is going to unravel.

The following day, we found out that the fever was due to a couple of infections.  One infection, in the lungs, they thought was due to aspirating on a piece of food... a lovely side effect of Parkinson's and swallowing.  Dad was given antibiotics and placed on thickened fluids.  In my poor, stressed brain, I thought he was permanently being placed on thickened fluids and was really upset, as where is the joy in life if one cannot eat food!  (He is still on thickened liquids, but has been upgraded to eating most foods.  They'll monitor his situation and adjust as he continues to improve.)  When I visited dad in the late afternoon, he was writhing around in bed, pulling at his bed clothes and generally agitated.  Antibiotics seem to have that effect on his brain. I was loathe to leave.

Yesterday afternoon, Friday... I had a call from the care home to say that dad was back at home.  Huh?  They said he was chatty (though not making much sense), and greeting all the staff.  When I got there at dinner time, he turned and gave me a big smile and I honestly fell over laughing.  He looked at me doubled over in laughter and gave another grin.  How was this the same person from the past two days??

Even still, when I went there today, he was looking the best I have seen him in a while.  He was calm and content, sitting quietly in his chair with his hands crossed..  Sitting out on the balcony, he looked up at the vent stacks on the tile roof and commented that it looked like the French Quarter.  What!?  He was more on the ball that I was!!  What a man.  Honestly.  If he wanted a change of scenery, all he had to do was ask!

Love is All You Need

My brother and I often marvel at how on the ball dad can be in some moments.  Like the one day he told me what temperature it was outside.  Not sure if it was an educated guess, but one cannot tell with him.  The other night, I stopped by to see him at dinner time.  A couple of volunteer students were standing beside him at the table, blocking his view of me.  I tried to sneak in, but I saw him register my face.  I ducked behind his chair, but I saw him rotate his head and put his hand up for me.  Sometimes there is just no pulling the wool over his eyes!

The past few times I have visited dad, he's reached out his hand to draw me in to give me a kiss goodbye and thank me very much for coming.  My heart does a little skip.  Communication is key in our lives... after all, we live in the information age!  When you want to connect with someone, you can text, email, call, Skype, Facebook, Instagram, Tweet.  Our communication is firing at top speed, always remembering connections and conversations.  Visiting with dad; he usually cannot communicate more than a sentence or two.  This has been frustrating and sad.  Rather quite frustrating for someone who likes to blab the day away.  Favourite family comments to me were; "Don't feel you have to talk." or "Are you talking just to listen to the sound of your voice?"  Yes, I like to natter away, so you can understand how I feel when I want to download to dad and he just doesn't get it.

In thinking on this, and recalling dad's response to me, that's when I had the thought... "Love is all you need."  You don't always need to sit there and fill the void with words.  Rather, I can sit there and give dad his dinner, or read a magazine.  He is reassured by my presence (and perhaps I am reassured by his) and he knows I am there because I care.  In our modern world of constant chatter, we (I) need to be reminded that there is nothing wrong (or awkward) with sitting still and being quiet.

(The photo above was shot as I walked out the door to head to dad's the other day.  Bushfires in the west carried smoke over Sydney and turned the sun into an eerie red ball.)

Meat and Two Veg. And Anzacs too!

I visited dad the other day at meal time, and if he wasn't eating roast beef with gravy, roasted potatoes and carrots!  I had made Anzac biscuits, so he got to eat them with his ice cream for dessert.  I asked him if he remembered that he used to crumble mom's Anzacs over the top of his ice cream... he seemed to remember that.  It's so strange... I have my mom's Anzac recipe... but cannot get them the same way she did.  Hers were always thin and crisp... just the way they liked them.  I like chewy Anzacs, and that's how mine turn out... no matter how much I try to make them like mom's.  I apologized to dad for the cookies being chewy and not crunchy... and he said, "They'll do."  To which I replied, "They'll do in a pinch, right?"  It is nice to have some moments of normality.

Back to the lockdown episode from the last post... the care home ended up being in lockdown for 12 days!  Just as they were ready to open, another 'incident' would occur, and they'd have to wait the requisite time before they could open again.  Thankfully dad wasn't involved in that!  Moving forward...

Have been experiencing a bit of guilt in not being in to visit dad as often as I can recently.  I think the pause in visiting got me into some bad habits.  To be honest, it is enjoyable to visit dad... once I get there, that is.  Sometimes we have a snack on the back patio, or hot chocolate in the amenity room, or chat in the sitting area.  You never regret slowing down for a while and giving consideration to life, even though life seems to have us running in circles for no given reason.  Must sort that out!  (I'll get back to you on the secret once I've figured it out!)

Lockdown

Warning... too much information ahead... I've been asked how dad is, and I can honestly say, I don't know.  The care home has been under lockdown this past week due to a gastro outbreak.  (Oh yes... there is no dignity in old age.)  Well, I can tell you that he is unaffected by it, as it is confined to the ground floor and he's up on the first floor (or second floor if you're North American!).  Seems strange to not have visited him... and I worry a bit as I know he likes the reassurance of me visiting.  When I visited last Saturday, he was sleepy and he was slurring his speech.  A couple of days prior to that, he was sparky and ate his entire meal, to the point where I asked him if he wanted to lick the plate clean.  That got a smile out of him.  Here's hoping the lockdown lifts soon... though it is now long overdue.  I have to run across the city for class, so must dash or I'm about to be late!

8am Wake Up Call

We've been doing so well. Well, I should say dad has been doing well.  I'm another story; another blog even!  When I visited dad last week, one of the aides got him out of his chair and into an arm chair.  We flicked through the pages of an Architectural Digest momentarily before dad got bored and wanted to get walking.  Well, if he didn't walk!  Of course, there were two of us at his side, and his steps are very faulty... but he walked through the activity room and into the dining room.  Go dad!  Was reminded again of his determiness.  We stopped for a pack of chips, and he gobbled them down.  Was also reminded that the simple things we take for granted in life... what a pleasure that bag of chips was to him.  After the chips, he struggled to get out of the chair.  I got the what-for for not letting him walk!  At that time, I had the thought... oh please, don't let him fall again.  We've been going so well, and he's finally recovered from the fall last August, then the cold/flu thingy he had.

8am this morning, I was sent straight back to the days of taking care of dad on my own.  Starting the day off with dad-drama.  The care home called me to tell me that he had tried to get out of bed this morning and had a fall.  Of course he did.  My brother left on an overseas trip last week.  Trust dad to have a fall when I am here on my own with him.  Thankfully, he didn't hurt himself.  Just some carpet burns on his elbows.  I was there this afternoon when the doctor came to check him out; and determined he was alright.  Just prior to that, I had been asking dad about the fall.  In a moment of clarity he said, "I can feel myself about to go over."  I got a little bossy and told him that he needed to ask someone to help him move, that he can't move on his own, what with the Parkinson's and all.  I got the look that said, 'What do you know?"  So I have my fingers, toes and nose crossed that he doesn't go down again!

I had a notification through Parkinson's Australia on my Twitter feed that there has been breakthrough research on Parkinson's and was to be featured on A Current Affair last night.  The Michael J Fox foundation has granted money to a new worldwide study. Until now, Parkinson's was typically confirmed only in an autopsy on the brain.  With advances in technology, they can scan the brain and determine the dopamine levels.  Around the world, these studies are now taking place where they are tracking the progress of Parkinson's in patients brains.  This information is then being shared with all the hospitals taking part.   This is huge; to be able to share all the findings and track and compare all the information.  The hope is with all this information, there will be a breakthrough into how and why Parkinson's occurs.  They say that they have already noticed changes in spinal fluid... which would be interesting... as dad had that fall and broke three vertebrae back in 1996.  (It was after that fall that he could no longer smell, another marker of Parkinson's disease which I will blog about next time.  I think this is enough info for now!

 I've included a couple of links here, though you may only be able to watch it in Australia due to licensing.  Let me know how you go!

A Current Affair - Parkinson's Breakthrough

More info at Shake It Up Australia

Time Passing

If you know me at all, you know I like to remember things, and reflect on how much time has passed.  Basically, I succeed at making people feel old! I realized a couple of days ago, that it is 9 years ago this week that we moved out of our place on 18th ave.  Can you believe it!?  Time is passing too fast!  Dad was diagnosed with Parkinson's the previous November.  Mom said, Right, that's it... we need to downsize.  House listed and sold in two months.  And at that point, they didn't have a place to move to.  Mom must have been slightly panicked, I realize now.  She took it all in her stride though.  When we walked into the showroom at Sussex House and discovered that a unit had opened up that morning, well, it was meant to be.  Life always has a way of working out, it has proved time and time again.  One would think I would learn to stop worrying!

I had been thinking (of course I had!), and then it was backed up by a chat with one of dad's therapists and my brother... that dad has seemed more settled and content recently.  It has taken a long time for him to settle in; what with various falls, fractures, illnesses and medications all taking a toll on his disease and mental capabilities.  He has bounced back a bit from that awful cold and antibiotics... they never agree with him.  He still tries to escape from his chair, doesn't know what day/week/month/year it is, has pesky visions... but on the whole he is a lot more content.

When I went in to see him today, he was in his chair in his room.  I stood back from the door and waited for him to notice me.  Sure enough, he sensed someone there, turned around, and smiled when he saw me. (At least I think he did!)

I happened to catch a segment on dementia the other day, and the family members described their parents dementia just like dad's.... the patients remember their loved ones, but don't know what day/week/month/year it is or what they had for breakfast.  They are easily distracted and cannot follow conversation.  Their sense of humor is in tact, and you just have to enjoy the moments you get with them, as there are magical moments mixed up in what can be quite sad.  Someone commented that with dementia, they lose their worry of day-to-day life... they don't need to worry or think about the future.  I had not looked at it that way before; so I guess dad is blessed with something that I am not... freedom from worry!

I'm just so happy I have got more smiles out of him.  Tonight he had soup as a starter at mealtime.  I said to him, "What's that joke?  Waiter, what's this fly doing in my soup?  It looks like he's doing the backstroke."  His face crinkled into a smile before I got to the punchline.  He's making me laugh too... one day I asked if he needed anything, to which he replied, "Chocolates."  Or another time he specifically requested Licorice All Sorts. 

Tonight, he asked if we could go outside for a bit.  When I asked why, he said that he felt it would do him some good!  I was able to drag the unweildy water chair out onto the back veranda.  Middle of winter and it was a balmy 16C!  (In fact, it wasn't until I got home that I'd realized I left my winter coat in dad's room.  Didn't even notice I was missing it!)

(Note: I have been slack in checking dad's emails... and my own, even.  Some of you have very kindly sent us through some emails and thoughts.  I have passed them on to dad, but failed to respond to you.  Thank you again for thinking of us, and I will attempt to respond sooner rather than later.)

Bright Spark

Sorry for the delay in updates... my life has jumped up and taken off on me... I cannot keep up!  Dad is doing alright; it is taking him a while to recover from that cold he developed a while back.  Still coughing and sputtering... but not sure if that is part of his disease or just plain genetics.  (Cough, cough.)

Both my brother and I went to see dad today, but at different times.  He went earlier and texted me a photo, to which I replied that dad looked content.  He was sitting at the window, looking at the rain come down on the trees in the golf course across the street.  My brother replied that he indeed was in good spirits today.  He was still alert and responsive when I visited later on.  It is very hard to have a conversation with him, and it is getting harder to understand what he is saying.  Though he made himself very clear when I asked him how he was doing and if I could get him anything?  "Chocolates," was the reply.  Chocolates I can do!

Yesterday when I went to visit, he was sleeping in his chair.  My thoughts went back to when mom and dad still lived in the big house and dad used to snooze in the chair Saturday afternoons.  I often feel bad for dad that he can't run around and explore the countryside.  Then again, that is something I like doing.  Truth be told, he just liked to sit in his chair, relax and look out at the trees.

I was waiting for him to wake up, and when he stirred, I placed my hand on his arm.  Without skipping a beat he said, "Who's that?"
To which I replied, "Who do you think?"
He had a small smile on his face.  He is still a cheeky thing!

Weather is wind and rain here.  Something like BC at the beginning of October.  So coats, boots, mittens, hats and umbrellas are in order.  Until the sun comes out, like it did on Friday, and you get caught out overdressed!  Layering is the order of the day.  And we don't have to think ahead about buying snow chains and shovels.  In fact, in the newspaper today, there was a list of where to see all the spring flowers... only three short months from now!  (Hmmm... dad isn't the only one with a bit of cheek!)

A Little Bit Sad Today

Rose Bay dusk today

Sunset over Rose Bay

I'm not a mother, so I don't know what "mother's guilt" is; wonder if it's similar to "daughter's guilt"?  It has been a bit hectic around here as of late... I have not got in to see dad as much as I would like.  When I arrived at dinner time tonight, I was told that dad was having none of the dinner.  I tried him with potato and meat - his fave - but he wasn't having any of it.  Dessert, however, was a different story... the ice cream disappeared.  I know how he felt though... he was just tired of the same old food.  Daughter guilt for not bringing him in special treats.  Daughter guilt for not being there more often.  Daughter guilt for getting frustrated.  Guilt, guilt, guilt.  I know people tell me not to feel guilty, that I've done enough, to live my own life, etc.  Yeah, they can go ahead and talk all they want.  I cannot change how I feel.

I look at dad and I just want to lift his burden.  I think of all he has suffered with in the past few years; remember the man he was, and my heart breaks a little more.  Life can be so unkind.  You try to find the beauty in the small things, but sometimes the sadness is just too great.  This is how it goes with dad.  Some days I leave with a heavy heart.  Just watch... I'll go see him tomorrow, he will be in great spirits and we will have a lovely visit.  So that is where we are at.

(Photos above were taken as I walked over to see dad.  I know that we live in a beautiful place in the world.  I do count my blessings... just a little bit sad today is all.)

End of Bed Heroics

So, dad has had a cold.  And I don't mind upping up my visits to see him.  Being sick with an underlying illness isn't cool at all.  He was a bit freaked out, so I didn't mind extra visits to reassure him.  Not to go into the details, will save him a bit of dignity, but there was one day in particular I was glad I visited when I did.  That may sound dramatic... but sometimes I feel like I am living in the middle of a drama!

With all this going on, I was not very happy to receive a phone call this morning saying that dad had attempted an escape out of the bed late last night.  Again.  (And again... if I had a dollar for every time I received on of these calls...)  He wasn't injured, but they were just passing the message on.  I said I would be by later on to visit, and see if we couldn't come to some sort of solution re: the End of the Bed Heroics (their words, not mine).  If I didn't find out upon arrival, that the man had actually, well, um... disconnected and dismantled the week before, the very alarm meant to alert the staff to bed escapees.  (There's a gap in the rails at the end of the bed that he has somehow remembered, as opposed to the call button which he should use.  Maybe should put that at the end of the bed.)  Sounds like a sophisticated jail break to me.

To be honest, I may be joking about it, but I am not really laughing about it yet.  "Determined, cheeky, naughty, strong, no one here quite like him"... were some of the words used to describe dad today.  I may not have kids, but I have a feeling I know what it's like to get called in to the Principal's office.  Have to say... am a bit over Parkinson's today.  I imagine dad is too.

Despite the nocturnal illegal activities, dad seemed sparkier and more with it today.  He may just have this cold beat.

Off to practice my deep breathing exercises.

World Parkinson's Day

April 11 is World Parkinson's Day... the birth date of James Parkinson, the English doctor who first published his findings on Parkinson's disease back in the early 1800s.  The Shake It Up Foundation has a byline that says "More than just the shakes".  Indeed, it is more than just the shakes.  Indeed, dad does not have any shaking at all.  Someone once said to me, "Your dad has Parkinson's?  But he doesn't shake."  No, he doesn't... Parkinson's is more than a shaking body.

Among dad's initial symptoms were: Bradykinesia (slowness of movement), which affects the fine motor skills and makes simple tasks like getting dressed a major undertaking, The "Parkinson's mask" (stiff face), stooped posture, small handwriting, depression, worrying.

Then it moved into: cognition, behavior, rapid, shuffling steps. It was towards the end of this cycle, we noticed the worrying new symptoms of memory loss and hallucinations.  Our observations were confirmed with the diagnose of Parkinson's related Lewy Body Dementia.  Shortly after this, he started having falls, where we were informed that Parkinson's affects the balance to the point where the patient can no longer walk, even though they may still have the strength.

Dad is now considered late stage Parkinson's where he has all the charming symptoms listed above, along with reduced speech, swallowing issues, severe short term memory loss.  With the dementia, he forgets that he can't walk and is always trying to get up and walk.  He has succeeded a few times, only to fall over and injure himself.

Dad had struggled with this disease for over ten years now.  One day a while ago, being slightly silly, I asked him if he had any advice for me.  He said, "Yes.  Don't get Parkinson's disease."

The other day I was reading about things they are researching for a cure for Parkinson's.  I had the thought, "Wouldn't it be nice if one day they find the cure for this wretched disease and say to themselves 'Of course that's the answer.  How did we not know it was that all along?' "

Till that day, we need to remain aware and do what we can to advance the research for a cure for this crippling disease.

PS... Update on the Seal Bark post... dad still has the terrible cough, but it's at least starting to clear in his chest.  When I went to see him yesterday, he was sitting in his water chair, gazing out at the trees, quite content.  That lifted my spirits a little.  ;)

Seal Bark

There's Parkinson's.  Then there's Parkinson's with dementia.  Then there's Parkinson's with dementia with a cold.  Poor wee mite is barking like a seal.  Don't need to look too far to see where us three kids came about the infamous seal bark.  I first noticed dad coughing early last week.  By the end of the week, the bark was in full effect and he had a baritone voice.  (Was thinking of contracting him out to the Sydney Philharmonic Choir.)  Jokes aside, illnesses are not cool with Parkinson's patients.  The fear is that the infection would go into his chest, and that is definitely not what you want to happen.  After taking a look at dad on Saturday, the doctor confirmed that dad's chest was clear, and put him on a round of antibiotics. 

My heart goes out to him.  It is annoying being sick at the best of times.  Your head is foggy, your throat hurts, you can struggle to breathe properly.  When I saw him tonight, he was not himself at all.  I have seen him like this before when things are not right, but it doesn't make it any easier to watch.  His brain is taxed which puts all the motor skills (we take for granted) out of sync; where it is a struggle to even put food in his mouth.  Of course this makes him very frustrated and asserts his independence even more.  I have to reach into my rather large bag of patience and grab a big handful!  He was being cheeky and not accepting my help.  So I quoted the famous line that children always say, "I will do it myself."  He didn't take well to that comment... so I quoted what mom used to say when we didn't get her joke ... I screwed up my face and said, "Excuse me, this is going to be a joke."  At which point dad burst into absolute fits of laughter, and then of course, hacking.  I have not seen him laugh that hard in years.  I don't know what it was, but I obviously struck his funny bone!  Which is helpful when you have to clear your throat!

As I was leaving, I said I'd come back in a day or two.  He has asked me to come back tomorrow... so I know he is just not feeling well.  Usually he is alright with me visiting every few days.  That's OK... he isn't too far away.  I can take some interior magazines and sit with him for a while and do research for school!  (That's what I'm calling it, anyway!)

Hopefully he has a good night's sleep and improves tomorrow.

April Showers

We have had a long stretch of lovely sunshine... but the rain hit overnight.  I must say, as a transplanted Vancouverite, I was a tiny bit happy to hear the rain. I mean, I did not know what to do with all the sunshine - I don't know how to be that happy! Funny thing, when it started last night, at first I didn't know what the noise was!  I had a laugh when I realized it was rain. 

April showers do not bring May flowers... at least not in the Southern Hemisphere.  I still haven't gotten used to the backwards seasons.  It used to be that once March hit, you would be looking forward to the longer days.  In Australia, we've been enjoying long days for a very long time, or so it feels like.  However, the clocks get set back on Sunday, so it's a return to short days for us.  Life down under truly is upside down!

I think it was seasons that confused dad the most.  I cannot remember how many times I had to correct him on the time of day.  Especially in Vancouver where the sky is still light out till 10pm in the middle of the year.  He couldn't figure out why the sun wasn't setting.  Even when mom was still alive... I recall one night in the summer where her and I came home to find a cereal bowl in the sink.  Dad had woken up in his chair, looked at the time, thought it was morning, so had a bowl of cereal.  When we arrived back, we confused him.  I remember him sitting at the kitchen table with his head in his hands, saying that it must be the next part of the disease.  Looking back, you can see the dementia was evident even five years ago.  We didn't really have a clue; thought it was connected to missing pills, or antibiotics he had to take at one point.  Perhaps it would be easiest for dementia patients to live at the equator where the days are equal every day!

Five years later, dad doesn't know which day of the week it is.  He hardly knows what time of day it is.  What he does know is who we are.  I may have mentioned this already... but he is making new memories, which is quite amazing.  He knows my brother is married, but doesn't quite have the right name.  He said to me the other day, L. is married, isn't he?  Why yes, he is!  As my brother likes to put it, maybe as time goes by, the memory moves out of his short term memory and into his long term memory and then he remembers it.  Ah, he's a funny one, my brother.

As for how dad is on the whole... he has been doing a lot of sleeping the last couple of times I've been to see him.  I've been trying to take something to do or read, so that I can just be there with him, even if we can't talk.  I've been trying to hold his hand, or give him a cuddle just to let him know we care.  He has reached out to both my brother and I when we have told him we were leaving, for a hug and a kiss.  In writing this now, it feels like some of our fight has left us and there is acceptance with his disease.  There is peace in that, and a certain happiness as well.  It's hard to explain.  Certainly I am sad to see my dad in such a state, and not able to enjoy life to the fullest.  I'm thankful we can have this time together, and that he still knows who we are and is still able to show us he loves us, as we are to him.

I know people have their opinions on how I should be living my life.  It is a tough one, to find the life/work balance.  No, I am not a mother; I do not have kids I am responsible for.  However, I am a daughter and have a father I am responsible for.  I feel that I cannot work in the traditional full-time capacity... I would not get to see dad through the week... he goes to sleep at six!  Like a parent would feel; I don't want to miss precious time with him.  People understand when mothers say they want to be with their children.  It is much harder to explain to people that I don't want to be so busy that I can't see my dad.  Yes, he is in a care home and getting good care.  A care home can provide the basic needs in life, but life is more than basic needs.  It's about love, and having people who understand you, who support you and are there for you.  I want to be able to see dad every few days, and to spend a quantity of time with him every so often.  If it makes it that much harder, and takes that much longer for me to figure my life out, then so be it.  Each of us makes decisions based on what is best for us.  Everyone has their thing; everyone is facing some sort of difficulty in their lives.  I am sure we've all learned by now that life is usually a little messy.  Our friends and family understand that and support us and nothing else really matters.

Basketball

So after the delay in posts... there are two back to back!  I wanted to share this story as I am still amazed.  I stopped in to see dad after his dinner tonight.  At 6 o'clock, the residents had made themselves scarce!  I can upon dad trying to escape from his chair.  Haha... some things never change.  I came up to him and asked if he was trying to make a run for it.  The look on his face told me I was right!

We sat and "chatted" for a while.  He asked if I had anything in my purse... haha.  I remembered there were some chocolates in his room, so went back to grab them.  I dumped them into my lap and if he didn't try to take a handful.  Ah... that's where my sweet tooth comes from!

About this time I spotted the new portable basketball hoop in the amenity room.  I thought it might be a fun diversion.  I found a balloon and took it over to dad to try out.  The balloon was a bit wimpy, so I went looking for something a bit more weighty.  I spotted a ball decorated like a basketball that must have gone with the hoop. I gave it to dad, and he went to throw the ball in the basket.  It bounced off the rim, and back at his face!  At which point he caught it and threw it back again.  It bounced off the rim and back at him; he caught it again.  I bent in half in laughter, I couldn't believe what I was seeing!  What's more, if he missed grabbing the ball, he gave it a boot with his foot!

I went to take the basket away, and sent him a bounce pass.  He caught it and bounced passed it back.  So we did this for quite a while before he decided he'd had enough and held on to the ball!

This is unreal for a couple of reasons... one... dad was never into sports and I hardly recall any of us tossing a ball with him on any given occasion.  The other is that his brain has stopped talking to his feet... his balance is off and he hasn't walked in 18 months.  I had no idea that his hand/eye coordination was so good.  Though I have read stories where people with Parkinson's have been able to get on a bike and ride it with no problems.  (Then they get off and can hardly walk.)  The brain is a complex, complicated thing.  I think if I was younger (and had the intelligence!), I would study neuroscience as I find it fascinating.

He's a little brat though... after we tossed the ball back and forth for a while, he started attempting fake throws, or as hard as he could.  I think he enjoyed himself!

Pinch and a Punch for the First of the Month

(Often dad would great us on a morning with that ditty above!  I looked at the date just now and realized that it's officially March here in Australia.)

Sorry... it has been a while since the last post... you must be wondering how we are doing here.  Very busy, that's for sure.  Life has seemed to pick up the pace lately, and things are happening in double time.  The big news is that yes, dad has a new daughter-in-law... my brother did get married three weeks ago today.  (Friday.)  A tiny wedding on a stunning Sydney day - sandwiched in between two very stormy weeks!  I scaled back on my schooling... the fast track was too fast and I wasn't getting to see dad like I wanted to.  A couple of things happened and I realized I need to be there a couple of times a week.  If not just to connect with his carer's, and with dad of course; to maintain a presence, as it were.

Some of the best advice I received about dealing with dad's illness was about connecting with his spirit; the essence of who he is. We can no longer communicate effectively with him: he has problems with his speech and with following and staying with a conversation. It used to upset and frustrate me that I couldn't talk with him. I've found myself more and more adapting to this new way of interacting with him, and making peace with it.

Tuesday afternoon this week was lovely and warm with a cool breeze blowing. I'd arrived at the care home just as they were serving afternoon tea. I managed to squirrel away some treats and drinks, which we ate out on the upstairs balcony. We had each other in stitches with some private jokes. Both of us had tears rolling down our cheeks. The brain is such a strange thing, of which I am learning more about every day. How can dad not converse with me, even to discuss recent events, yet his sense of humor is as sharp as ever, if not sharper!

He was telling me he wanted to ride his motorbike into Sydney... but that he would need a helmet with hair. A helmet with hair? (An interesting look.) He corrected it to a helmet with padding. A friend explained that dementia can be likened to a filing cabinet where the contents are misfiled or missing. The brain goes searching for a word and can't find it... or perhaps it transposes a word... hair for padding. It makes sense, kind of. That's why conversing with dad is such a struggle.... it takes a while to translate!

Anyway, I am starting to find the visits with dad to be more peaceful. In the middle of a busy day, in the middle of a busy life it's nice to slow down for a minute and consider what really matters. What's the rush with life?  We should be so lucky to end up in a nursing home one day... why rush to get to it?  Why not slow down and appreciate what surrounds us in the present. 

When I went to leave dad, he thanked me very much for coming.  It indicated to me that the visit had somehow been extra special.  I don't know who's spirits had been lifted more, his or mine.

So that's just a little update on how we've been.  Will try to write another note sooner next time.

Happy (Belated) Birthday

Sorry for the delay in blog posts... has been rather busy on this side, what with completing a briding course and all.  Thought I had better get this posted before I start the next course tomorrow!

Dad's birthday was a few weeks back... and will wonders never cease... he remembered how old he is!  The care home was doing a bus tour to Manly and North Head that day, so I went along with dad for the view.  They stopped for morning tea at North Head... and this was our view.  South Head directly in front, and Sydney city off to the right.  Rose Bay somewhere in between.  Pretty fancy view for a birthday!

Dad is holding his own.... hasn't lost his sense of humor, that's for sure.  Has had me bent over in stitches a few times.  Some times you visit and he's up, then other times he's down.  Aren't we all.  The down days can be hard to take... though I had the thought yesterday that I am much more used to dad this way than I used to be.  Which does make it easier when dealing with him, but doesn't make it any less sad.  Oh well, that's life with dad, I guess.

It's late here and I had better sign off... will try not to make it so long between visits here!

Happy 2013!

Up close and personal

 

Amoungst the agapanthus

We are keeping a close eye on the temperature here in Sydney today... it was 21C at 6am, 27.5C at 9am and now at 3pm, it's 40.3C.  (Not sure when you start adding the exact decimal point!)  The temperature is ok, as it's supposed to cool down again tomorrow.

I visited dad yesterday around dinner, and was surprised to see how well he looked.  He is back in his wheelchair, after sitting in the water chair since his fall in August, recovering from the fractured bone in his pelvis.  He was sitting at the table with his back to me, so I crept up behind him and covered his eyes.  No doubt to him as to who it was!  While he does know who I am... he was asking as to the whereabouts of his motorcycle.  Um... I asked him if he hadn't sold it a while ago!?  (2004... though he does not remember that.)

It was such a nice evening, and since he is back in his mobile wheelchair... we flitted off to the garden outside!  I thought to get a picture with my phone... nice that it's always handy, even though the quality is sometimes questionable!  We sat up to a table, and I said to him, "I can't believe how good you look, dad."  And his reply?  "Are you trying to do me in, are you?"  I could only put my head down on the table and laughed!

I had emailed the care home today and commented on how well dad was yesterday.  The return comment was that he had noticed dad is more chirpy as of late.  That's happy news indeed.

On the way out in the elevator, a woman noticed dad and commented that she had seen him trying to escape out of his wheelchair the day before.  Of course she did.  Ah... he must be feeling better!