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!)