Sadness

July 2001

Last night my brother returned my stock pots and left them at the front entrance.  As I was taking my shoes off, I noticed that they were blocking the route to the door.  I had the thought that I should move them as they blocked access in case of fire.  At that moment, a great wave of sadness washed over me, as I realised that was a thought that dad had drilled into my head, and he no longer understands to look out for me.  Wherever I lived, he always worried about an escape route in case of a fire and I would have to explain my plan to him.  He always made sure I understood not to leave candles burning, or electrical appliances on when I left the house.  (Perhaps he was slightly paranoid, but I think he came across some fire cases when he was a builder and knew how easily something could happen.)  He also reminded me to drive with extra caution in the rain after a dry spell as the roads could be slick.  Or inquired after the oil levels in my car... because he knew it wasn't high on my levels of interest.  All those things a dad looks out for for his children... now I will just have to listen to the words of advice he has imprinted on my brain.

There has been a shift in dad's condition.  He had been slowing down a bit... and at the beginning of last week I noticed a significant change.  By the end of that week, he was sleeping most of the time and very difficult to arouse.  Upon inquiry, I was informed that he had been put on a patch for pain management.  Indeed, when I spoke to him last Saturday night when he finally woke up, he managed to explain that he had pain in his spine and hips.  He has had the back pain since he had the accident on the job site back in April 1996... with the combination of osteoarthritis and sitting all day, the pain must be continuous.

I have been trying to see him most days now.  If I miss a day, I am slightly worried over what I have missed.  When I do visit now, there's a lump in my throat.  During yesterday's visit, he slept most of the time.  When he is awake, he is still taking in everything around him, and still smiling when he understands something funny.

And yes, I had to relocate the pots out of the way last night.  I am my father's daughter, after all.

Catching Up

Dad's balcony view

I have memories of dad heading off to work as a builder in the summer heat, large Thermos full of water and ice to keep him going all day.  When he came home, sweat and saw dust at his hairline, he would stand at the sink and down two glasses of water in a row until his thirst was quenched.  Years ago, he also took a Thermos of coffee every day. ( I recall it smelling good, so would help myself to a cupful if I was ever on the job site with him.  It was horrid, bitter stuff that had sat in the jug all day.  Adults raved about it, so I drank it thinking it was the cool thing to do!)  One day, dad quit coffee, cold turkey.  Never touched it again. After mom passed away, I think he had tea on possibly two occasions.  The point of my story is, water was dad’s drink of choice.  How good does a glass of water taste when you are thirsty.  So it breaks my heart a little to know he cannot drink water anymore.  Unless an additive is added to make it thicker.  See, the thing with this stupid rotten Parkinson’s disease it that it strips you of every last single pleasure in life.  I do not know the entire reason why, and to be sure, am slightly afraid of researching it.  The muscles start to degenerate... so the tongue, the throat, the jaw which all used in eating and drinking do not work like they used to.  Dad has been seen by a speech pathologist who has requested that he drink thickened fluids only.  If he does drink water, it can go down the wrong way, end up in his lungs and he can get an infection.  (Hence the fear a couple of weeks back that we may have required a visit to hospital for a round of antibiotics.)  Even after drinking thickened fluids, he can end up in a coughing fit.

I have been loath to write about dad’s condition as it is very private.  Guess this is the reality of the situation now, so no point in hiding it.  Dad has not been feeding himself for some time now, and requires assistance.  Usually the care aides at the home help him, and I do not make a special effort to be there with him.  I was there at dinnertime tonight to help him eat.  He doesn’t eat much, and I notice now that he is having more problems chewing.  While he’s currently eating regular food, I am quite sure that it is only a matter of time before that changes. 

I would like to spend more time with him.  Sadly life with all its responsibilities continues on.  This is why you are not meant to lose your parents until you are in your 60s and semi retired; not in your 30s and 40s which are meant to be your prime earning years for your retirement.  Is it any wonder I wake up at 3 and 4am most nights, worrying as to what is going to happen to us.

Still, the blessing in all of this is that he still remembers who we are.  I always get a smile when I show up!  Though I usually arrive with big waves and some sort of silly greeting... so is it any wonder!  I read a comment on Twitter the other day that mentioned people with dementia are good company.  I had never thought of it that way before, but that is exactly how it feels, visiting dad.  Today we sat out on his balcony, overlooking the back garden, and it was peaceful and relaxing.  This story is probably better left unsaid, but I need an injection of humour right about now.  My brother reminded me the other day of a silly saying dad used to say; “When you see me coming, you’d better step aside.  A lot of men didn’t and a lot of men died.”  When I quoted this back to him today, he had a little grin on his face.  Yep... the sense of humour is still there.

Conversations with dad bounce from subject to subject in one sentence.  Indeed, I usually cannot understand what he is saying.  One minute he was asking me about a lamp in the backyard, then next he mentioned something a barbeque.  When I asked him if it was a barbeque he wanted, he said yes, that would be nice.  As luck would have it... there is a yummy Portuguese chicken shop at the end of the street in Rose Bay.  Will have to make a stop there within the next few days.

Just Chilling

February in Sydney is a mixed bag of weather. It can be gorgeous and warm... but the minute there is a hint of rain in the air, the weather turns muggy. Wednesday started out as a perfect beach day. When I dropped by to see dad, the wind had picked up a bit. (Later on, the humidity I kicked in and the storm hit.)

I love that dad's location is close to home, the beaches and the shops. It makes it easy to pop by for a hello and a kiss. I won't lie and not say I have not been having several major pity parties for both him and myself.  In life, you just have to alter your course just a touch, to appreciate what you do have. I appreciate that I can stop by to see dad, and we can sit on the balcony; study the trees and listen to the birds.

I left dad snoozing in his chair on Wednesday.  I had moved his chair so that it overlooked the back courtyard.  A breeze was blowing through the open door and some jazz music was playing in the background. I thought to myself, 'That actually looks pretty good.'

Valentine's Day

Seeing the abundance of flowers around town today for Valentine's, brought back a sweet memory from years ago.  When I was quite young... dad snuck into my apartment and left me a bouquet of flowers for Valentine's.  It melted my heart then, and it melted my heart again when I remembered.  Prior to the memory... I had been poo-pooing the single red roses they were selling.  Especially the ones in the city... $15 for a single rose!!  (Another memory... mom used to get personally miffed when men were coerced into buying flowers.  On one occasion, she talked a man out of buying a bouquet that had clearly seen better days, and steered him in the direction of another.  I cracked up when she told me that story.  She had gumption, that mother of mine.)

Anyway, next thing I knew, I was in possession of a single stemmed red rose.  On my walk home... an older woman following me remarked that it was the first sign she had seen all day that it was Valentine's Day.  I explained that I was taking it to my dad, and then had to tell the story that he was in a care home with Parkinson's and dementia.  When she said she didn't want to get dementia, that she was doing everything she could to avoid it.  And what did I say?  That dementia was simply a deterioration of the brain due to ageing.  (Oh yes, I know how to make people feel good about themselves!)  But it truly is... as the body deteriorates, so does the brain.  Dementia is on the rise as we live longer lives.  It is truly a sad disease, but we need to get past the stigma of it.  Someone recently said to me that they couldn't deal with nursing homes, so they didn't go.  I once felt the same way, but don't have a choice.  Once you meet the people in the homes, though, they endear themselves to you.  They all want the same as any of us... to be shown love, friendship and kindness.  Stigma be gone!

The reason for my long-winded story... was there a reason?  I guess with roses, it is obviously a symbol of love... but suddenly I was aware of it being a symbol more than anything I could have conversed to dad.  (Hopefully you can read between the lines as I don't think I've made myself clear and have written that sentence more than a few times trying not to sound twee!)

With dementia, and dad's speech and not being able to converse with him... our recent visits have been surprisingly delightful.  The thought came to me that it's not unlike conversing with a child... you can't make out what they are saying all the time, and they certainly don't understand you... but it doesn't mean that you can't communicate and share a laugh.  I think I have moved beyond the pity stage and just appreciate dad as he is.  There are a few moments of clarity or clear speech. I just talk to him and tell him what I am up to.  Since I am studying interior design, I am more understanding of his profession as a builder.  Talking to him about construction sometimes brings about those moments of clarity.   His sense of humour is still keen... so I'll tell him a joke or funny story to make him laugh.  After all, according to Reader's Digest, laughter is the best medicine.  It truly lifts my heart to see little smile creases in his cheeks, so I will work hard to make it happen!

So that's the news with us.  Sending much love this Valentine's Day... be sure to give your loved ones a big kiss and cuddle!

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.